Physical Therapy for Children-Module 8: Special Settings ... · Special Settings and Educational Environments ... (ECD) with a set of core ... olleagues c 110 and Tieman and colleagues

Physical Therapy for Children-Module 8: Special Settings and Educational

Environments

Course Description: This course was adapted from the textbook: Physical Therapy for Children, 4th Edition. It provides the essential information needed by PTs, both student and professional, when working with children. Like the previous bestselling editions, the 4th edition follows the practice pattern categories of the Guide to Physical Therapist Practice and uses the IFC model of the disabling process as it presents up-to-date evidence-based coverage of treatment. In this latest edition, Suzann Campbell DeLapp, PT, PhD, FAPTA, Robert J. Palisano, PT, ScD and Margo N. Orlin, PT, PhD, have added more case studies and video clips, additional chapters and Medline-linked references online, and Evidence to Practiceboxes to make it easy to find and remember important information.

Module 8: Special Settings and Educational Environments covers chapters 27, 28, and 30. Chapter 27: The Environment of Intervention Chapter 28: The Special Care Nursery Chapter 30: The Educational Environment

Methods of Instruction: Online course available via internet

Target Audience: Physical Therapists, Physical Therapy Assistants and Athletic Trainers.

Educational Level: Intermediate

Prerequisites: None

Course Goals and Objectives: At the completion of this course, participants should be able to: 1. Recognize the core concepts of child development2. Identify Barnard's four features of successful parent-child interactions3. Recognize the importance that culture plays in successful interventions4. Differentiate between Stewart's five social support theories5. Identify strategies to help families engage in the intervention process6. Recognize the history of the neonatal intensive care environment7. Recognize the incidence of prematurity and low birth weight8. Differentiate between neonatal pulmonary conditions

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9. Identify common signs and symptoms of neonatal seizures 10. Differentiate between the stages of retinopathy of prematurity 11. Identify the eight core concepts of family-centered care 12. Recognize the purposes of the neonatal physical therapy examination 13. Recognize the current physical therapy evaluation and examination tools for the

neonatal patient 14. Recognize current federal legislation in the educational environment 15. Identify federal definitions of children with disabilities 16. Recognize Section 504 of the Rehabilitation Act 17. Recognize areas that have prompted due process hearings involving physical therapy

services 18. Identify the least restrictive environment 19. Identify models of team interaction 20. Recognize requirements of the IEP document under IDEA 2004 21. Recognize successful components of educational based physical therapy goals and

outcomes Criteria for Obtaining Continuing Education Credits: A score of 70% or greater on the written post-test

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DIRECTIONS FOR COMPLETING

THE COURSE:

1. This course is offered in conjunction with and with written permission of Elsevier Science Publishing.

2. Review the goals and objectives for the module. 3. Review the course material. 4. We strongly suggest printing out a hard copy of the test. Mark your

answers as you go along and then transfer them to the actual test. A printable test can be found when clicking on “View/Take Test” in your “My Account”.

5. After reading the course material, when you are ready to take the test, go back to your “My Account” and click on “View/Take Test”.

6. A grade of 70% or higher on the test is considered passing. If you have not scored 70% or higher, this indicates that the material was not fully comprehended. To obtain your completion certificate, please re-read the material and take the test again.

7. After passing the test, you will be required to fill out a short survey. After the survey, your certificate of completion will immediately appear. We suggest that you save a copy of your certificate to your computer and print a hard copy for your records.

8. You have up to one year to complete this course from the date of purchase.

9. If you have a question about the material, please email it to: [email protected] and we will forward it on to the author. For all other questions, or if we can help in any way, please don’t hesitate to contact us at [email protected] or 405-974-0164.

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879

27 The Environment of Intervention

THUBI H. A. KOLOBE , PT, PhD, FAPTA • AMANDA AREVALO , PT, MS, PCS • TRICIA ANN CATALINO , PT, MS, PCS

Physical therapy for children relies on parents and other caregivers to positively infl uence the children ’ s func-tional outcomes and well-being. Consequently, changes

in the profi le and aspirations of any contemporary society shapes the demand for specifi c types of services. Since the 1980s, the role of pediatric physical therapists in the provi-sion of services for children with disabilities has expanded to address the demands for enhancing the capacity of the caregiving environment. More recently, the concept of par-ticipation , proposed in the International Classifi cation of Functioning and Health model (ICF) by the World Health Organization, 159 has challenged professionals to consider how individuals function in their environment as the ulti-mate outcome of intervention. Participation is defi ned by the ICF as being involved in life situations and activities. 159 Although planning and providing services that enhance chil-dren ’ s participation continues to be a challenge, designing services that enhance both children ’ s participation and the capacity of the caregiving environment is a monumental task.

A better understanding of how physical, social, and atti-tudinal elements in the environment mediate children ’ s functional skills and participation is critical for effecting change. Simply acknowledging that the caregiving environ-ment is a crucial element in child development is not enough. Neither is accepting the role of the family. Understanding of environmental determinants entails synthesis of informa-tion from current research fi ndings on (1) environmental factors that contribute to optimal or nonoptimal functional outcomes in children, (2) how factors interact and directly or indirectly infl uence outcomes, and (3) the types of inter-vention programs or approaches that infl uence the caregiv-ing environment and child outcome directly and indirectly. Also needed are studies, particularly by pediatric physical therapists, on the environment of intervention as it relates to service delivery and motor outcomes in children. Until there are more studies on the impact of physical therapy, literature from psychology, anthropology, and family therapy offers a sizable body of knowledge that can be useful to physical therapists.

This chapter synthesizes the literature with focus on envi-ronmental factors as they relate to child development and participation, family functioning, and physical therapy interventions. First, we briefl y review theoretic frameworks and fi ndings that support targeting the child ’ s caregiving environment and also may inform intervention strategies. Next, we analyze characteristics of the physical and social environments that have been closely linked to child out-comes and that could form the basis for service delivery models for children with disabilities. In the last section, we offer suggestions for how therapists can plan interventions that are informed by and infl uence the environment (con-textual interventions). Because physical therapists focus their interventions on motor development and its ability to promote participation whereas research on environmental factors has focused on social and cognitive development, the chapter concentrates on environmental factors that we believe (1) may affect or be affected by physical therapy, (2) are important for children ’ s activity and participation in daily life, and (3) are likely to contribute to the differ-ences in the outcomes of children based on family background.

DEFINITIONS The environment in this chapter is used to describe the physical and social settings in which children develop, grow, and function. The physical environment may be a home, day care center, school, or neighborhood. It encompasses struc-tural conditions such as space, equipment, and material resources (e.g., toys and books), and relates to safety and access. The social environment conveys interactions and relationships that nurture development and shape behavior. It includes relationships, starting with interactions with parents, siblings, extended families, and extending to peers and other adults in the community. The social environment also relates to emotional wellness and the quantity and quality of support. For children and their families, these two environments are inextricably intertwined as they constitute

SECTION V Special Settings and Special Considerations SECTION EDITOR: ROBERT J. PALISANO, PT, ScD

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880 SECTION V Special Settings and Special Considerations

authors and researchers in early interventionist study have expanded the defi nition to include both the setting where children actively participate in their everyday lives and natu-rally occurring routines or rituals. 98,121,129 This defi nition, which regards the natural environment as contextual, is sub-sumed in the broader defi nition of the caregiving environ-ment and incorporated in information that will be discussed in this chapter.

CONCEPTUALIZING THE ENVIRONMENT

GENETICS AND THE ENVIRONMENT

The debate between the genetic versus environmental roles in shaping children ’ s outcomes is long-standing. However, the consensus is that both do (nature-nurture interac-tion). 90,132 Each child is equipped with biologic and genetic characteristics that are susceptible to environmental factors that in turn infl uence development and participation. 91 For example, research in the fi elds of neuroscience, genetics, and developmental psychology report compelling data showing that the quality of early life experiences infl uences a child ’ s biologic and genetic make-up. 48,74,107,132 The National Scien-tifi c Council on the Developing Child 108 explained this rela-tionship and the basic science of early childhood development (ECD) with a set of core developmental concepts that are included in Box 27-1 .

Knowledge of the epigenetic response to cumulative exposure to nurturant or suboptimal environmental condi-tions has implications for understanding the role of the envi-ronment in health and well-being. 48,87 Epigenetics is the

a caregiving environment . No one environment can predict child outcome.

The physical environment has always been an important focus of pediatric physical therapy intervention for children with motor delays or disabilities. Concepts of skill acquisi-tion, the principles of motor learning, and the dynamic system theory 54,145,146 emphasize the signifi cance of the envi-ronment for motor development and function. Gentile ’ s taxonomy of tasks 54 considers the task and the environment to be interrelated and offers suggestions for using the envi-ronment to teach a task or skill. Dynamic system theory considers the interaction of neurologic and psychologic systems and the social environment to be essential for the development of motor function. 145 Studies by Palisano and colleagues 110 and Tieman and colleagues 147 illustrate how environmental setting can affect the methods of mobility used by children with cerebral palsy. For example, children who were capable of walking with support increasingly needed more assistance ambulating at home, school, and in the neighborhood. Because more and more fi ndings seem to point to close associations between social and economic environmental factors and child and caregiver function-ing, 88,135 therapists need to also understand and incorporate some of these factors into their interventions to enhance functioning and participation in the physical environment. This is also necessary to cultivate successful partnerships with families and other caregivers.

The question of the natural environment often comes up in discussions of the environment of intervention. Initially, therapists and other providers defi ned the natural environ-ment as a physical setting or space. More recently, however,

From National Research Council and Institute of Medicine. (2000). From neurons to neighborhoods: The science of early childhood development. Committee of Integrating the Science of Early Childhood Development, J. P. Shonkoff & D. A. Phillips (Eds.). Washington, DC: National Academy Press: Executive Summary, pp. 3 – 4.

Box 27-1 Core Concepts of Child Development

• Human development is shaped by a dynamic and continuous interaction between biology and experience.

• Culture infl uences every aspect of development and is refl ected in childrearing beliefs and practices designed to promote healthy adaptation.

• The growth of self-regulation is a cornerstone of early childhood development that infl uences all domains of behavior.

• Children are active participants in their own development, refl ecting the intrinsic human drive to explore and master one ’ s environment.

• Human relationships, and the effects of relationships on relationships, are the building blocks of healthy development.

• The broad range of individual differences among young children often makes it diffi cult to distinguish normal

variations and maturational delays from transient disorders and persistent impairments.

• The development of children unfolds along individual pathways whose trajectories are characterized by continuities and discontinuities, as well as by a series of signifi cant transitions.

• Human development is shaped by the ongoing interplay among sources of vulnerability and sources of resilience.

• The timing of early experiences can matter, but, more often than not, the developing child remains vulnerable to risks and open to protective infl uences throughout the early years of life and into adulthood.

• The course of development can be altered in early childhood by effective interventions that change the balance between risk and protection, thereby shifting the odds in favor of more adaptive outcomes.

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CHAPTER 27 The Environment of Intervention 881

environment. The relationship is considered dynamic in nature, with all three elements having the power to change the nature of the interaction and the outcome of the child ’ s development. Collectively these models support embedding services within the context of the child ’ s environment and provide a framework for therapists to conceptualize and plan assessments and interventions. Toward the end of this chapter, we will illustrate how developmental frameworks can inform practice.

ENVIRONMENT AS A DETERMINANT OF CHILD HEALTH AND DEVELOPMENT

The World Health Organization (WHO) Commission on the Social Determinants of Health (CSDH) published the Total Environment Assessment Model for Early Childhood Development: Evidence Report (TEAM-ECD) supports the mounting evidence that environmental enrichment has pos-itive implications for “ sculpting ” the developing brain. 135 The TEAM-ECD report explains how the environment, specifi -cally the socioeconomic environment, is an elemental deter-minant of early childhood development (ECD) and, therefore, the most signifi cant determinant of health and well-being across a life span. 73 As a critical social determinant of health, ECD is therefore viewed as a means to reduce health disparities and promote health and well-being of the population. The commission published 10 Facts About ECD as a Determinant of Health 160 that expand conceptualizations about child development ( www.who.int/child_adolescent_health/topics/development/10facts/en/index.html ).

Much of the information from fi ndings that informed the facts described in the TEAM-ECD report is not new. What is new is the emphasis on nurturance, attention to social and economic resources and inequities, and focus on the health and well-being as the ultimate goal of ECD — the essence of participation. The following are the Guiding Principles of the TEAM-ECD that, in our opinion, capture this environment-person interplay: 1. Early child development (physical, social/emotional, and

language/cognitive development) is the result of interac-tions between children ’ s biologic factors and the environ-ments in which they are embedded.

2. Successful early child development occurs when the physical, social, and economic environment are nurturant for children.

3. The use of an equity-based approach for providing nur-turant environments for children addresses the inequities in socioeconomic resources that result in inequities in early child development. Further, gains in social and economic resources for families of young children result in commensurate gains in children ’ s developmental outcomes. 135 The WHO Commission together with the National

Academy of Sciences reports 134 are the result of an extensive analysis of research on early brain development and the role

study of heritable alterations in gene expression that act independently and do not change the DNA sequence. 27,34 Until recently, scientists believed that genes were the sole carrier of hereditary information from parents. However, children also inherit epigenetic “ switches ” from their parents that turn genes on or off. These switches can be fl ipped by exposure to environments and experiences to help or hinder adaptation to challenges, and they can be passed from gen-eration to generation. 21,122,143 Epigenetic research in experi-mental animals and retrospective research in humans confi rm that environmental infl uences during developmen-tal periods have profound consequences on the phenotypic expression of biologic and behavioral traits during adult-hood. 49 These fi ndings suggest that physical therapists have a unique opportunity to infl uence environmental factors for optimal motor development and function with potential to carry over for generations to come.

DEVELOPMENTAL FRAMEWORKS AND THEORIES

Child development models have also evolved to encompass not only genetic predisposition but also personal character-istics and environmental factors. These include develop-mental systems theory, ecocultural theory, the ecologic model of human development, developmental “ niche, ” and transactional theory. Developmental systems theory considers a range of developmental and evolutionary models to study the interaction of factors that infl uence development. 59 These factors may include genetics and biology, the physical and social environment, and culture. Ecocultural theory is based on the construct that children develop a sense of well-being when they are engaged in ongoing routines and activi-ties with their family and caregivers. 156 These routines and activities are derived from the greater culture and how the family organizes to support the needs of its members and the family as a whole. The ecologic model of human develop-ment by Bronfenbrenner 15 expanded the transactional model to include concentric layers of infl uence that begin at the level of the family unit (microsystem) and extend to neigh-borhoods (mesosystem) and policy (macrosystem). This model emphasizes both the multilevel and multifaceted nature of environmental experiences that infl uence child development and performance. The developmental niche integrates children ’ s development with their unique envi-ronments and cultures. 64 Developed by Super and Harkness in 1986, this model stipulates three components that encom-pass the child ’ s sociocultural environment: (1) the physical and social settings of the child ’ s life, (2) culturally regulated customs and practices of child care, and childrearing, and (3) the psychology of the caretakers. 141 The three compo-nents compose the child ’ s microenvironment and interact together to shape the child through daily life routines. The well-known transactional theory, proposed by Sameroff and Chandler, 124 views the child ’ s development as a function of an interaction among the child, family, and the

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of early experiences in shaping development. Because chil-dren rely on motor function to fulfi ll expected societal roles (participate), these fi ndings challenge physical therapists to not only concern themselves with the social and economic resources of the children they serve but to continually strive for innovative approaches to intervention. To do so will require current information on the characteristics of the environment that may be closely related to motor function and moderate intervention outcomes of physical therapy. As more and more children with disabilities participate in com-munity events such as team or competitive sports and as technology advances affords such independent endeavors, ignoring socioeconomic barriers is no longer an option. Although research supports the notion of sensitive periods during which environmental experiences appear to greatly infl uence development such as the early childhood age, motor functioning and memory seem to show remarkable plasticity throughout the life span. Essentially, for as long as therapists rely on caregivers to support their interventions, the caregiving environment will be a major determinant of physical therapy outcomes.

CONTEXTUAL FACTORS The question that often comes up in discussions of the role of the environment as it pertains to service delivery is that given the multiplicity of potential environmental factors that contribute to child outcome, which factors are more impor-tant? There is no simple answer because various factors are closely correlated with different domains of child develop-ment, and the relationships vary based on age, diagnosis,

Figure 27-1 Conceptual framework of factors affecting child and family function and participation within home and child care settings (proximal environment).

Childrearingpractices/daily

routines:

Parent/caregiverchild interaction

Home environment

Child healthand development

Neighborhood/Community

Child Outcomesand Participation

Family outcomes

Family Resources

SocioeconomicSiblingsInformal supportFormal support (therapy)

IntrinsicFamily Factors

Beliefs/ideasKnowledgeStress/copingCultureCaregiver health

caregiver health status, and family support. 23,88 Also, it is not the number of factors but their relationships and interactions with one another and with caregiving that seem to predict outcomes. 115,132,135 Furthermore, the nature of relationships is complex, suggesting the need for conceptual frameworks or models that can help contextualize these factors. Because no one environmental factor is solely responsible for an outcome, characterization of the environment must refl ect interrela-tionships among factors. In this section we describe environ-mental factors, and their characteristics, that may be closely linked to physical therapy goals, interventions, and outcomes — in other words, factors that could either infl u-ence or be infl uenced by physical therapy to bring about optimal child and family outcomes. To some extent, some of the factors have distinguished family functioning between families of children with and without disabilities. 88

We propose a conceptual framework that depicts the factors affecting child and family functioning and participa-tion ( Figure 27-1 ). For example, studies show that factors such as caregiver beliefs about childrearing, culture, stress and depression, resources available to families, and caregiver health are closely linked to optimal or nonoptimal family functioning, particularly in families of children with dis-abilities. 36,84,90,117,131 These factors manifest themselves in parenting behaviors during parent-child interaction, how caregivers structure the environment, and the extent of social networks. The interplay among the factors and family functioning occurs in both the distal and proximal environ-ments. We will elaborate on each of the factors in the follow-ing sections and, as much as possible, highlight the implications for physical therapy.

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on child outcome, 120 therapists should consider intervention plans that incorporate informal support networks. The Family Resources Scale 36 and Network Survey 108 are quick, easy, and family-centered ways of obtaining information on the environment from families. Scales such as the School Function Assessment 26 assess the child ’ s performance in the school setting and can therefore generate information about this environment. The School Function Assessment is described in Chapter 30 .

PROXIMAL ENVIRONMENT

The proximal environment represents the microcosm of the child ’ s ecology. 15 Caregiving is embedded in the proximal environment. A signifi cant portion of this chapter focuses on interactions within this environment as they are the vehicle through which nurturance occurs and the family and child shape each other. 16,40,92 Within the proximal environ-ment the family, including the child, develops mutual rela-tionships and a sense of cohesion that allows it to function as a unit and to nurture its members ( Figure 27-2 ). We have developed a framework that conceptualizes how factors within the proximal environment interact to infl uence child functioning and participation (see Figure 27-1 ). In families with young children, family functioning centers on parent-ing behaviors and childrearing routines (e.g., caregiver-child interaction, or amount and variety of stimulation). Parent-ing behaviors and childrearing routines in turn are shaped by several factors such as beliefs and knowledge parents have about child development and competence, cultural expecta-tions, the caregivers ’ physical and mental health, availability of resources, physical space and play materials, and the neighborhood environment. The parenting behaviors inter-act with the child ’ s health and abilities to infl uence the child ’ s

DISTAL ENVIRONMENT

In this chapter, “ neighborhood ” and “ community ” are used interchangeably when referring to the distal environment. Neighborhood refers to a specifi c geographic area, such as a residential area. Community usually refers to a group of people who share not only a geographic area, but also social goals and institutions. 120 Neighborhoods may contain social institutions such as schools, churches, and hospitals. The extent to which child development is infl uenced by proximal and distal environments is proportional to the time a child spends in each environment. Younger children are infl uenced more by proximal environments. At school age, the infl uence of distal environments increases. 76,135 Research suggests that the impact of distal environments may enhance the effects of the proximal environment. For example, children of fami-lies with low incomes who live in neighborhoods with limited resources are doubly susceptible to the deleterious effects of poverty than children of families with low incomes who live in relatively affl uent neighborhoods. 76 Darling and Stein-berg 29 observed that for older children neighborhood factors explained differences in child outcomes over and above the variance explained by family factors.

The processes by which the factors within the neighbor-hood and community exert their infl uence on child develop-ment and competence are not clear and are, at best, speculative. Some theorists and researchers propose that fre-quent contact among parents at common neighborhood places may lead to shared ways of raising children. 82 Parents may use this information to structure family routines and experiences. Others believe that how the family structures and manages resources within their neighborhood deter-mines the types of experiences they will engage in to raise their children. 25 For example, families who live in neighbor-hoods with high violence and poor employment opportuni-ties may limit their children ’ s exposure or access to social institutional resources such as the YMCA. Yet another view is that because poor employment opportunities are also associated with long working hours, children may spend a signifi cant amount of time in alternative child care set-tings. 112 Depending on affordability, child care may be of good or questionable quality.

An emerging role of the physical therapist is consultation with families who express interest in their children ’ s partici-pation in community activities, such as sports, and swim-ming programs offered by park districts, crafts activities offered by most libraries, and children ’ s theater. The extent to which children and families benefi t from community activities will depend on what constitutes an optimal envi-ronment, access, and the family ’ s level of participation. Because research indicates that availability of an informal social support network of extended family and friends who live nearby may moderate the impact of the neighborhood

Figure 27-2 Family and its members: Sibling participation in a therapy session.

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such as self-help and mobility may not be high. In some instances, other extended family members may infl uence parents by lowering expectations of the child, particularly a child with a physical disability.

Family structure has several implications for physical therapy. The family structure can have a protective or stressful impact on children ’ s development and well-being. For example, a high adult/child ratio that includes extended family members may create more opportunities for caregiver-child interactions that promote the child ’ s well-being and positive social and cognitive developmental outcomes. But, because of the fi ndings on motor outcome, during assess-ments therapists must not only determine if the child ’ s family is relying on the extended family member as caregiv-ers, but they should also seek to understand the expectations the family members may have for the child ’ s functional inde-pendence and participation in family routines. Few studies have examined the benefi ts of a high adult/child ratio in families of children with physical disabilities. It would appear that situations in which the child requires assistance and multiple services, a high ratio would be benefi cial.

Because low socioeconomic status creates the likelihood for overcrowding and limited resources, the appearance of a high adult/child ratio under these conditions may stress the family structure and place more demands on the family. Overcrowding has been associated with poor cognitive development, interpersonal behavior, and mental health. 40,68 Therefore, the appearance of overcrowding must be dis-cussed with the family. Therapists must seek to understand the family ’ s perceptions of the role of the various members of the household as it relates to the child before seeking or consulting social services. Failure to do so may bridge the trust the family may have with the therapist or result in a high cancellation of scheduled appointments.

Family Functioning Many of the environmental factors that may infl uence or be infl uenced by physical therapy exert their infl uence on the child through family functioning. 115 Family functioning refers to the family ’ s ability to conduct and accomplish every-day activities across various situations. 66 The child, as a sub-system within a family system, infl uences and is infl uenced by the interactive nature in which the family performs its functions. A great deal of family functioning centers on par-enting behavior and childrearing. Childrearing practices rep-resent goal-directed actions that parents engage in to promote their children ’ s development. 29 A related term used in the literature is family routines . 31,33,43 That childrearing is the vehicle through which families shape the behavior and devel-opment of children is widely accepted, 29,134,135 although the childrearing practices and behaviors that exert the strongest infl uence on motor development are unclear. Research on childrearing has focused on cognitive, social, emotional, and language development. 5,77 The few studies that have included the motor domain suggest that how parents interacts with

development, family functioning, and the child ’ s level of participation. Key to this ecology is the family ’ s home which provides the child easily accessible opportunities for social and physical interactions that foster the child ’ s health and development. How the child perceives and responds to these interactions extend beyond the home to other environments such as school and neighborhood.

Family Structure At the center of the child ’ s proximal environment is the caregiving family and its structure and function. 126 Others refer to structure as household composition. 53 The family as a social system and unit consists of subsystems that represent different levels of interactions. Levels may represent the characteristics of an individual member of the family, a parent-parent, parent-child, and a child-child dyad. Family structure or composition may either be mother-child or father-child households (single parent families), nuclear families (mother, father, and children), extended households (grandparents and aunts and cousins), or foster families. Given the changing demographics in the United States, defi -nitions of what constitutes a family and family functioning are changing, giving way to a more blended or contemporary family and roles. In any given situation, parents or a child are but one subsystem of the family unit; therefore, interven-tions directed at a child without regard to other subsystems may be limited. The structure of the family also shapes family resources and infl uences the type of care the child receives. Whether or not families are two-parent versus single-parent families not only affects income, but it also infl uences the fl exibility parents can have in employment arrangements and child care.

A question of the benefi ts of the ratio of adults to child as they relate to family structure merits special consider-ation. Research fi ndings on the infl uence of adult/child ratio on child development suggest that a high caregiver/child ratio is favorable, particularly for social and cognitive devel-opment. 71,105 Infants are likely to receive a variety of stimula-tions when the ratio is high. It is important to point out, however, that the literature on children living in single-family homes suggests that these children have poorer out-comes when compared to those who live in homes with two biologic parents. 18,92,152

The fi ndings on the adult/child ratio relationship and motor outcome, however, are inconclusive. 53,85,105 Mulligan and associates 105 observed that infants of families with a low caregiver/child ratio had lower motor scores at 9 months but no correlations were found at 6 and 12 months. Garrett and associates 53 and Kolobe 85 found no associations between the caregiver/child ratio and infants ’ scores on motor tests. The presence of an extended family (versus the number of adults in the family) may play a key role in moderating this rela-tionship. For example, in extended family households, the infant may be indulged by a large number of adults. As a result, the demand on the child to be independent in areas

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verbal or behavioral response. 91 The continual and contin-gent characteristic of parent-child interaction is what is believed to shape relationships and infl uences skill acquisi-tion. Parent-child interaction is predicated on the notion that the child and caregiver have a dual responsibility to maintain the interaction. 4 A great deal of parent-child interaction occurs during caregiving and play, which are sensorimotor experiences. When parent-child relationships provide nurture and responsiveness, the result is healthy brain archi-tecture, which can promote positive child outcomes. 131

Barnard 5 identifi ed four features of successful parent-child interaction: • Repertoire of behaviors, such as body movements and

facial expressions • Contingent responses to each other • Rich interactive content in terms of play materials, posi-

tive affect, and verbal stimulation • Adaptive response patterns that accommodate the child ’ s

emerging developmental skills If both the parent and child must have a suffi cient repertoire of behaviors, then limitations in either the child ’ s move-ments or the caregiver ’ s facial expressions may result in interactions that are less then satisfying. 77 Children with motor disabilities often demonstrate slow responses to exter-nal stimulation, which may limit the richness of contingent responses between them and their caregiver. Indeed, mothers of children with disabilities were described as initiating play and more directive during play interactions with their chil-dren compared to mothers of children with typical develop-ment. 100,133 Preliminary fi ndings from a longitudinal study on the infl uence of parent-child interaction on motor outcome showed a relationship between the dyadic patterns at age 1 and motor performance at age 3 years. 86 Therefore, sharing information with parents about their children ’ s abil-ities and providing suggestions for encouraging their chil-dren ’ s activity and participation may optimize parent-child interactions.

Implications of parent-child interactions to physical therapy are numerous. Of particular relevance are fi ndings that suggest that parent-child interactions are amenable to change and that the quality of interactions can improve with time. 5,79,131,137 Using videotaped recordings of parent-child interactions at 30 months of age, Spiker and associates 137 observed that mothers in the group receiving weekly home visits and center-based program were more supportive and offered more developmentally appropriate stimulation than mothers in the control group. Chiarello and Palisano 24 reported modest gains in the quality of interaction following physical therapy intervention provided in the context of play and parent-child interaction. Given that children with physi-cal disabilities have limitations in their repertoire of motor skills, it would seem that physical therapy interventions should emphasize adaptive responses and synchronous rela-tionships between children and caregivers. Focusing on motor activities that promote parent-child interaction early

the child and structure the learning and home environment may affect motor development. 2,6,24,53 In turn, parent-child interaction and how the caregiver structures the learning environment are related to parenting beliefs and culture 11,104 with family stress serving as a moderating factor between parenting beliefs and behavior. 131

Parenting Beliefs Childrearing practices do not occur in isolation. As depicted in the model presented in Figure 27-1 , childrearing practices that families engage in may refl ect the beliefs, ideas, percep-tions, expectations, and attitudes families have about parent-ing and child competence. 83,104 Many parents have ideas about how children develop and what they should do to foster specifi c developmental skills. Parents ’ beliefs about child development may also infl uence decisions about why one approach to childrearing is better than the other. 47,136 The belief-behavior link is believed to have contributed to parent education models and programs used by profession-als. The underlying assumption is that parents have the power to change the child (change agents) and that educat-ing parents will infl uence their ideas about parenting and child outcome.

A great deal of information about child development and behavior that shape parents ’ beliefs about childrearing comes from media that are widely endorsed by society, 84 such as magazines and television. Similar information about chil-dren with disabilities, however, is not as readily available, creating information gaps and uncertainty. Indeed, parents of children with disabilities have consistently ranked the need for information high. 148 Parents have also perceived information sharing as one of the most valuable aspects of therapy. 155 These fi ndings have signifi cant implications for therapists. They underscore the importance of therapists sharing information with families about development, assessment fi ndings, various intervention approaches and their evidence, and resources that are available in their com-munities, including information on the Internet. According to Grosec and associates, 60 “ parents who have accurate knowledge of their child ’ s ability are better able to match teaching efforts to their child ’ s developmental level ” (p. 266), particularly fathers. Children, as early as infancy (1) initiate actions that may or may not be acceptable to their caregivers, (2) are capable of evaluating the consequences of such actions, (3) express and negotiate their needs, and (4) make decisions to comply with, or resist, the caregivers ’ actions or instructions. 67

Parent-Child Interaction Parent-child interaction is a childrearing component of family functioning that represents an intimate transaction between children and their caregivers; it is considered the basis for subsequent relationships children form. 5 Parent-child interaction refers to any verbal or nonverbal commu-nication between the parent and child that is met with a

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her on when she tries to eat the cheerios by herself. Praise has been shown to increase the likelihood that the child will repeat the success, and most children like being praised when they are successful. ” Overall, many of the elements of the teaching loop are consistent with the principles of motor learning described in Chapter 4 .

Culture A family ’ s culture is at the heart of parenting behaviors and transcends beliefs and expectations about child development and societal roles. The notion that many of the childrearing practices that parents engage in are embedded in families ’ ethnic traditions is also widely accepted. 52 The challenge for professionals continues to be the cultural mismatch that results from development and implementation of culturally inappropriate interventions. Cultural mismatch is also believed to contribute to health disparity, particularly between the majority and minority cultures. 151 The mismatch can also affect the professional-family-child relationships.

A distinction needs to be made between ethnicity and culture as these terms tend to be used interchangeably. Eth-nicity is part of one ’ s identity derived from membership through birth in a racial, national, or linguistic subgroup. 93 Individuals can come from the same ethnic group (e.g., His-panic), but differ in culture. Therefore, defi ning culture in terms of ethnicity overlooks the variations within groups and often results in stereotyping of families. Culture is con-sidered to be a shared ideology and valued set of beliefs, norms, customs, and meanings evidenced in a way of life. 142 See Box 27-2 for central themes and other terms that are used to describe culture. Culture infl uences how families understand life processes, defi ne health and illness, and per-ceive the causes of illness; it also shapes their attitudes toward wellness and infl uences their beliefs about the cure. This includes physical therapy. Culture is also believed to play a role in the confi dence with which childrearing ideas are held by parents, and the fl exibility with which parents are ame-nable to change, particularly in light of new information (e.g., parent education). 52

in the child ’ s life may provide a foundation for later relation-ships with adults and peers.

Characteristics of positive interactions include fl exibility of the caregiver, responsiveness to the child ’ s distress and cues, and contingency in responses by both the child and caregiver. The ability to (1) allow disruption, (2) redirect the child in a supportive manner, and (3) allow the child to initi-ate an action are reported as distinguishing features of suc-cessful and mutually enjoyable interactions. 5,100 This information is particularly relevant for families of children with short attention who need repeated redirecting, and chil-dren with cerebral palsy who may need prompts and extra time to initiate actions. Therapists are encouraged to con-sider these essential ingredients when working with caregiv-ers on new skills for their children.

Therapists can also explore parent-child interactions intervention approaches developed by professionals in other disciplines. For example, the Promoting First Relationships (PFR) curriculum is a training program for providers to help caregivers provide sensitive and responsive care that facili-tates positive parent-child relationships. Studies show that when service providers are given PFR training, they learn how to give parents feedback to promote nurturing relation-ships, improve parent-child interactions, and help mothers learn about their child ’ s feelings and needs. 78,79 The research on PFR shows that when the providers were trained, mothers were more competent in recognizing their child ’ s interactive behaviors and cues. Further, the children were more respon-sive to their mothers and more contingent in their interac-tions. When caregivers teach a child a new skill, physical therapists can encourage them to particularly pay attention to the child ’ s cues of engagement and disengagement, such as pleasure and distress. Because children have a wider rep-ertoire of disengagement than engagement cues and because learning a new skill is likely to trigger a cluster of disengage-ment cues, demonstrating how the caregiver can recognize, prevent, or alleviate the cues may be more effective than simply showing the caregiver how to teach the new skill. Sumner and Spietz 140 provided excellent information on child cues.

Therapists may also share and model the “ teaching loop ” with parents. 140 The teaching loop has four elements: (1) verbally and nonverbally alerting the child to the task and teaching material, (2) giving clear instructions about how the task it to be performed, (3) allowing the child time to perform the task, and (4) giving the child feedback. Central to the teaching loop is the process of contingency, the imme-diacy of a response from either the child or the caregiver. An example of instructive feedback is “ It ’ s really nice the way you let her fi gure out how to pull her arm out from under-neath while she was lying on her tummy. This opportunity allowed her time to plan and strategize (on how to get her arm out), to engage in trial and error, and to know that you are watching to help if needed. ” An example of positive feed-back is “ It is great how you give her eye contact and cheer

Box 27-2 Central Themes Pertaining to Culture

• It serves as a blueprint to guide daily behavior. • It is a system of learned patterns of behavior. • It is shared by other members of a group. • It infl uences peoples ’ beliefs, values, behaviors, and

perceptions. • It is a way of life. • It is passed on from one generation to another. • It is valued by members of the culture and considered to

be right. • Its infl uences are not always conscious.

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outcomes, and parents in this category are likely to pursue several childrearing options. Perspectivistic beliefs are asso-ciated with adaptive or fl exible parent behaviors. Parents believe that multiple causes may interact with other systems to produce different or alternative outcomes. Take an example of a mother ’ s reaction to her child ’ s inability to crawl at 1 year. A mother who has a categorical belief may suspect heredity and decide to “ wait and see. ” A mother with compensatory beliefs may suspect heredity or illness and consult a professional, whereas a mother with perspective beliefs may acknowledge the possibility that this is some-thing that runs in the family, but may also investigate other potential causes such as illness and the degree of stimulation or expectations in the home, and she may consult both friends and professionals. Guttierez and Sameroff 61 observed that Mexican-American mothers tended to be categorical, but bicultural Mexican-American mothers were more per-spectivistic than Anglo-American mothers. These fi ndings highlight the infl uence of acculturation on cultural beliefs and parent behavior.

How parents perceive their children ’ s development and behavior has signifi cant implications for examination, goal setting, and intervention. The fl exibility to accept one or a variety of outcomes is also germane to expectations parents may have about therapists, therapy, and the intervention process as they relate to their children. Perspectivism is asso-ciated with ability to accept diversity (of child behavior and outcome). We believe that this would include ideas of outsid-ers such as health care providers. Although Sameroff and Feil 125 indicated the neither category is good or bad, they suggest that the explanations given by parents for why things occur be put in the context that applies to each category. In a case of a child with a disability, when the cause of the dis-ability is unknown, or there are multiple causes of functional limitations, or multiple interventions, having a perspectivis-tic view may be helpful. Parents are more likely to change when new information is in agreement with their views and beliefs. 65

Cultural beliefs that families hold about childrearing and development need to be examined in the context of decisions parents make. One way of understanding families ’ perspec-tive is to use scenarios or vignettes. Another is to use ques-tions that focus on both the context and content, particularly circumstantial contexts, and to engage in meta-listening in order to hear how parents explain their children ’ s behavior and expectations. For example, therapists may ask questions like, “ If one were to understand how and why your child moves the way she/he does, what would one need to know or do? ” Or “ children with Down syndrome sometimes prefer to sit and not move around, tend to have strong preference for certain foods than others, or to enjoy banging objects. I notice that Kiesha likes to do some of the same things. Why do you think she does these things? Is that what your family thinks? Does this bother you? What about other family members? ” What is important is how parents perceive and

Literature on culture is extensive and a detailed discussion on culture and child development is beyond the scope of this chapter. For more information, the following are recom-mended: Rios Mu ñ oz, 117 Bruns & Corso, 19 Madding, 97 Leavitt, 89 Masten, 101 Rogoff and associates, 119 and Super and Harkeness. 142 A central theme of the literature on culture is that the lack of self-awareness by professionals during family-professional interactions can produce negative emo-tional responses and hinder collaborations. A therapist ’ s educational background, culture, values, and beliefs may unconsciously infl uence the goals and hopes they have for children and families. In this section, we will briefl y discuss conceptualizations about cultural beliefs and parent-ing behaviors that we believe enhance collaborations between therapists and families from diverse cultures and promote cultural sensitivity — a step toward cultural competence.

Conceptualizations of the cultural environment and how it is linked to the developing child vary. One such conceptu-alization, the developmental “ niche, ” has been proposed by Super and Harkness. 142 The developmental “ niche ” describes three core concepts that we believe could be integrated into frameworks and approaches for interventions with families, particularly team-based interventions. These concepts con-sider the child ’ s cultural environment as (1) representing culturally shared ideas held by parents that inform childrear-ing, (2) comprising individuals that have assigned roles and responsibilities within a “ given frame of routines of daily life ” (p. 4), and (3) consisting of shared childrearing practices that integrate the child into the environment. These concepts are distinctive and yet complementary. Cultural beliefs and parent action have implications for collaborative goal setting. Parents who are concerned about the basic survival of their children will organize their caregiving around protection. Parents may hold their infants more and engage in soothing and tactile type of interactions. On the other hand, parents who believe that the lives of their children are not threatened may engage more in talking with the baby than holding the baby. 116 The implicit nature of cultural beliefs suggests that therapists should listen for information that relates to the hierarchical nature of beliefs (e.g., survival/protection before stimulation) when gathering data during examination and goal development. Skills in interviewing are of utmost importance.

Another conceptualization that provides a good under-standing of the link between the cultural beliefs and parent-ing behaviors comes from the hierarchy of beliefs by Sameroff and Feil: 125 categorical , compensatory, and perspectivistic . These beliefs infl uence how parents perceive and respond to their children ’ s behaviors 61 and differ based on acculturation and biculturalism. A categorical belief is associated with attributing a single cause to one outcome. Parents with cat-egorical beliefs are likely to exhibit diffi culty in adapting their childrearing practices. A compensatory belief is char-acterized by a belief that multiple causes lead to multiple

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care that may be experienced by families. Stress serves as a moderating factor between parenting beliefs and behavior. Shonkoff 131 described the impact of contextual factors on developmental outcomes based on the principle of dynamic stress. Dynamic stress includes positive stress, tolerable stress, and toxic stress. Positive stress is physiologic stress that is short-term and repairable. Tolerable stress can be neutralized by supportive relationships that provide a safe environment and have minimal impact on a child ’ s develop-ment. Toxic stress (such as, extreme poverty, physical/emotional abuse, maternal depression, family violence) can disrupt brain architecture, which can lead to developmental delays. The fundamental principle of dynamic stress is important when considering environment and contextual factors in relation to the science of early childhood development — that is, the interconnectedness between genetics neurobiology, developmental psychology, and ecology.

Stress associated with caregiving is not unique to families of children with disabilities, although these families report more stress than their counterparts. 88 All families experience unique stressors. The difference between whether or not stress will disrupt family functioning is in how the family perceives the stressful event. Each family reacts to a stressor according to the family ’ s perception, the number of stressful events they are experiencing simultaneously, the family ’ s resources for managing the stressors, and characteristics of the stressor events themselves. 102 Studies show that the number of child-related stressors and the amount and quality of family resources, such as social support, are the most signifi cant factors in the adjustment of the family. Therapists need to be aware of the real and perceived stress-ors and the resources or support available to each family unit. Adaptation appears to be a continuous variable that is dependent on the unique combination of stressors and resources.

interpret the child ’ s behavior. 69 Hirsberg suggested listening for anxiety and confl ict (in terms of decision making). If shifting parent perspective is considered in the best interest of the child (e.g., from categorical to perspectivism), then the therapist should ask parents how their expectations could be realized, the rationale behind the goals they envis-age for their children, and what they perceive as a conse-quence if a goal is not attained. This is particularly important for parents from minority cultures who may have a harder time participating in decision making and for whom barriers to proactive participation and collaboration may exist. 99 When working with families from culturally diverse popula-tions, therapists also need to be aware of where the decision making power is within each family. In many families, the father is the decision maker; however, in cultures such as Mexican- or African-American families, extended family members may be the decision makers.

Documented negative consequences of cultural mismatch and incompetence on the part of professionals have led to attention directed at training in cultural sensitivity and competence. Knowing about other cultures can be a daunting task. The Think Cultural Health website ( www.thinkculturalhealth.org ) is a resource for health care professionals to become culturally competent. The website provides materials and tools and helps allocate resources on professional cultural competency. Several cultural awareness self-assessments questionnaires are available (e.g., from the Maternal and Child Health website: www.hrsa.gov/OMH/cultural ). Box 27-3 includes a checklist of practical actions. We have compiled the list from information identifi ed by authors cited previouly. Therapists may fi nd the list useful when working with families of diverse backgrounds.

Parenting Stress and Coping One rationale for intervening with children with disabilities and their families is to reduce levels of stress and burden of

Box 27-3 Concepts to consider when working with families of culturally diverse backgrounds

Develop an awareness of one ’ s own values, beliefs, and culture. Learn about the family culture. Determine the family ’ s extent of acculturation. Learn (via observation and interaction with the family) about

the family ’ s views on children, childrearing, child development, disability, intervention, medicine and healing, roles of family members, common religious beliefs).

Respect the uniqueness (such as values and beliefs) of each family system: • Determine if there is a family member who is the

head-of-the household, and address that person when delivering service.

• Determine which family member is the primary caregiver for the child, and include that person in the therapy session.

• Determine if there is more than one person who is the primary caregiver or who is included in childrearing.

• Communicate in culturally appropriate ways, such as addressing family members in formal or informal tones.

• Use examination procedures, tests and measures, interventions, and activities that are culturally sensitive.

• Recognize that a caregiver might identify with one culture but might not choose to adhere to its beliefs.

• Use translators when needed, and make sure to speak to the caregiver and not the translator.

• At the initial examination, gather only pertinent information about the family ’ s culture in relation to the child, parenting practices, and childrearing beliefs.

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The results also revealed that the majority of families seem to be able to balance caring for a child with a disability with other family demands. These fi ndings suggest that the history component of the physical therapist ’ s examination should include questions about caregiver health. This information exchange is useful for intervention planning but must be voluntary on the part of the family.

Family Resources Part C of the IDEIA of 2004 mandates determination of family resources as part of child and family assessment and as a basis for the development of the individualized family service plan (IFSP). Family resources, or lack thereof, are a major contributing factor to child outcome and may be part of the proximal or distal environment. 51,103 Within the proximal environment, the family ’ s resources may be internal, such as parents ’ level of education or knowledge about child development, whereas the distal resource may be external such as income-related resources or support net-works. Because family resources are numerous, multifaceted, and need based, not all the resources that are needed to promote optimal family functioning can be provided through the formal service delivery system. Therefore, the approach recommended is to select family resources that may be related to motor development and participation in the home and community and evaluate how they may be impacted by physical therapy interventions. The multifacto-rial nature of infl uence suggests that positive childrearing practices can mediate negative factors of a child ’ s physical environment 40,92 but not vice versa. In this section, we will discuss socioeconomic status (SES) and family support. SES is an indicator of parental education, occupation, and family structure. 70

Socioeconomic Status Children of families with low SES are overrepresented among children with disabilities and developmental delays 134 and less likely to receive a full complement of services. 103 The infl uence of poverty on child development is nonlinear. Younger children are more susceptible to the effects of poverty. 35 Children of minority race/ethnicity tend to be the most affected by poverty. 17,51 Two studies reported a positive correlation between SES and motor development of young infants, 53,85 calling attention to the need for physical thera-pists to examine the relationship more closely.

How SES infl uences child development and competence is not well understood. Several mechanisms have been pro-posed. First, SES organizes family life in terms of determining how much money or time parents allocate to raising their children. Second, factors such as poor maternal and infant malnutrition, stress, and pervasiveness of toxic environments that are prevalent in low SES environments affect brain size and growth. 113 Other mechanisms are believed to be the types of neighborhoods that parents choose to raise their children ( Figure 27-3 ), access to community resources that foster

Stress seems to also be related to the number of roles a person assumes. 57 Mothers who were the sole responsible provider for their children reported greater stress and poorer psychologic well-being than mothers who were partial pro-viders. Although multiple roles were found to positively infl uence the mothers ’ self-esteem, too many roles resulted in depressive symptoms. With more and more single parents working out of the home, the varying and confl icting roles of caregivers should be considered when planning interven-tions with families. Stress compounds the impact of poverty on children ’ s development. For example, the child outcomes of a parent guidance intervention provided to mothers of low socioeconomic status (SES) were less favorable for mothers experiencing high stress. 14 These fi ndings suggest that therapy interventions, if not well matched with the fam-ily ’ s needs, may add to parenting stress.

The fi ndings on stress and coping provide a compelling reason for physical therapists to assess caregiver stress. A therapist with good communication and observations skills should have little trouble identifying stressors in families. However, assessing the level of stress is easier to do when working with a multidisciplinary team. Psychologists or social workers can help guide the interview process or administer evaluations that are related to parental stress, maternal depression, and other toxic stressors. If these pro-fessionals are not available, as is sometimes the case in rural areas, tools that assess caregiving within the home environ-ment (e.g., the HOME), maternal stress level and psychoso-cial level (e.g., the Parenting Stress Index-Short Form (PSI/SF), and socioeconomic status (e.g., Hollingshead scale) may help guide decision making and determination of toxic stressors occurring in the child ’ s life.

Once identifi ed, stressors should be refl ected in the type of service delivery, frequency, and duration of intervention. For instance, for a family whose income is far below the poverty line and at risk of being evicted from their home, improving their child ’ s gross motor development and receiv-ing weekly physical therapy services might not be a priority. In such situations, referrals to social services and community resources might be more benefi cial than physical therapy.

Caregiver Health Evidence of the relationship between the health of caregiver and that of children with disabilities continues to grow. Findings from a Canadian population-based study suggest that there may be an increased risk for chronic health condi-tions among caregivers of children with disabilities such as cerebral palsy, particularly those with behavior problems. 13,88 These caregivers reported more and poorer health condi-tions such as back problems and ulcers and higher episodes of depression and stress than caregivers of children without disabilities. Although no causal connections are implied, the fi ndings suggest that caring for children with neurodevelop-mental disorders, particularly if accompanied by behavior problems, may be an added source of stress for caregivers. 13

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those without. 88 Two forms of support are described in the literature: social and professional, or informal and formal. 36 Social support refers to mutually rewarding personal inter-actions from which an individual derives feelings of being valued and esteemed. The need for social support for chil-dren with special needs and their families varies throughout the life span. A shift in support occurs as the child matures, from professional support, to family support, to support from friends. The caretakers of younger children rely on spouse interaction 42 and physician information for support, whereas caretakers of older children rely more on friends and community members. 28

An important source of professional support is informa-tion sharing. Positive child and family outcomes have been associated with those interventions that focused on provid-ing parents with information pertaining to child develop-ment, caregiving for a child with special needs or a chronic disease, and linking families to community resources. 75,109,128 Therapists are an important source of information for parents in many areas of development, particularly on issues related to mobility and assistive devices.

The impact of social support on parent, child, and family functioning has been studied extensively. 36,139 Overall the fi ndings reveal that social support can buffer the negative effects of stress and impoverished distal and proximal envi-ronments. The adequacy of various forms of support enhances positive caregiver interaction styles, positive per-ception of the child, and family well-being. The authors also have discussed various ways of assessing social support. Not only is support offered in different ways and perceived to have different meanings by families, but also professionals construe the concept of support differentially. Stewart 139 described fi ve social support theories that can be applied to clinical practice and, therefore, are germane to this chapter: • Attribution theory relates to motives for helping, the

process of gaining or giving support, and the negative as well as positive aspects of support.

• Coping theory refers to the cognitive aspects of support and its costs to those involved.

• Equity theory describes the reciprocal nature of support. • Loneliness theory emphasizes the affective aspects of

support. • Social-comparison theory addresses the effects of peer

support. Combining these perspectives, Stewart proposed several

recommendations for intervention. First is agreement between the health care professionals and persons providing support regarding the intervention approach. Second is the notion that support can foster adaptation to stress and prevent health disorders and that professionals have a role in understanding the sources of stress and proposing ideas for support. For example, therapists can ascertain whether their clients have a social network that mediates potential loneliness. According to Stewart, recognition of the recipro-cal role of social support may encourage the professional to

child development such as child care, the availability of learn-ing material in the home, and parental stress. 17,53,63

Research on resilience and protective factors suggests that infants and young children who live in adverse conditions are most vulnerable when protective factors such as maternal competence are stressed. 157 Efforts to ameliorate the negative effects of poverty on children, particularly through parent education, have had mixed results. Halpern 63 performed an extensive review on the outcomes of early intervention for children and families with low SES and concluded that little progress has been made in the early 21st century in improv-ing the lives of families from low SES, including those with children who have special needs.

Of signifi cance to pediatric therapists is the discrepancy that often exists between services provided under research conditions compared with actual practice. Interventions provided under research conditions tend to be more com-prehensive and intensive. Depending on program resources, therapists may need to use innovative approaches to service delivery. Frequencies and intensities predetermined by pro-grams may need to be modifi ed to accommodate the fami-lies ’ needs. For example, depending on family needs, therapists may explore with families the feasibility of inten-sive interventions initially followed by periods of monitoring and consultation. In other words, therapists may need to explore the issue of critical periods for child and family learning. Currently the money allocated to services for chil-dren with special needs is far less than the costs associated with providing “ best practices ” as mandated by IDEA. 16

Informal and Formal Support Support represents the relationship between the need per-ceived by an individual and the appropriateness of the response. Parents of children with disabilities have been reported to have lower perceived social support compared to

Figure 27-3 Neighborhoods where children grow up infl uence their development.

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forms of obtaining information about the child ’ s functional abilities in their environment.

IMPLICATIONS FOR INTERVENTION Despite the overwhelming evidence that supports the impor-tance of the environment in shaping the development and functional independence of children, changing the childrearing environments of children through interven-tions such as parent education has proved diffi cult. At the heart of this dilemma is lack of information about the amount of resources or the intensity of interventions that are of suffi cient magnitude to bring about change in the child and family. Evidence suggests that families ’ familiarity with particular teaching strategies, coupled with the impor-tance they place on achievement, plays a major role in the types of activities they will invest in. 55 Yet seldom do profes-sionals take the time to understand these expectations and strategies.

Interventions with children can only be as successful as what the caregiving environment has to offer. The ultimate goal of therapy is to enhance this environment by supporting and promoting positive interactions between the child and the environment and participation in life situations. In the last segment of this chapter, we propose ways for therapists to use the information from the preceding sections when planning assessments and interventions that are contextual. We briefl y describe an organizing intervention model that we have developed, which capitalizes on the characteristics of the environment and key features from some of theoretic frameworks previously discussed. We draw attention to how the contextual environment can inform what we consider the “ fi rst encounter ” between the therapist and the child ’ s family, discuss the skills that the therapist and family must

share information and offer support to decrease the family ’ s sense of isolation.

Home Environment For decades the connection between the home environment and children ’ s development and competence has been the subject of research by psychologists, educators, and health professionals. 20 Research during the 1970s and 1980s was largely concerned with understanding the relationship between poverty and child development. As the number of children born prematurely increased, the home environment has again emerged as a topic that merits special attention. 10,12 Traditionally, motor development was believed to be less sensitive to changes in the home environment. This perspec-tive was supported by studies of children younger than 3 years of age that used the Bayley Scales of Infant Develop-ment. Later studies of preschool children, however, suggest there is a positive relationship between the quality of the home environment, measured by the Home Observation Measure of the Environment (HOME), and motor develop-ment. 10,53,86 These fi ndings suggest that the infl uence of the home environment on motor development may be gradual. There may not be an immediate impact on function. The HOME assesses the quality of various aspects of child par-ticipation in family activities, teaching and learning oppor-tunities, and the appropriateness of toys, which are important for therapists and parents to discuss. The HOME also pro-vides a systematic way of gathering information about the caregiving environment and can be a valuable asset for service delivery in any setting.

Physical therapists have expertise in modifi cation of the physical environment of the home to increase a child ’ s activi-ties and participation. The focus has been on adapting equipment the physical space to accommodate the child with disabilities. This can include architectural changes such as ramps or handrails, and special equipment such as special chairs and standers. The child ’ s home also offers the thera-pist an opportunity to put interactions in context. Assess-ment of the caregiving environment is particularly useful for interventions designed to improve a child ’ s participation in family activities and routines. Examination and evaluation of a child ’ s strengths and needs in the home enables informed decisions on whether intervention should focus on changing the child ’ s abilities, the task, the environment, or some com-bination to improve activity and participation ( Figure 27-4 ). The assessment includes, but is not limited to, type of fl oor surface, space, curbs and steps, door sizes, table heights, and access to toys. Observations can include how the family orga-nizes tasks, environmental demands placed on the child, and opportunities for play and exploration. Besides the HOME, other assessment tools that consider the child ’ s environment are the Pediatric Evaluation of Disability Inventory (PEDI), 62 and School Function Assessment (SFA), 26 Children ’ s Assess-ment of Participation and Enjoyment (CAPE). 81 In addition, parent interviews, questionnaires, and surveys are other

Figure 27-4 Contextual environment: physical and social.

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Anticipatory Guidance Anticipatory guidance is a concept and practice that has been used extensively in health care. Telzrow 144 defi ned it as “ the provision of information to parents or children with the expected outcome being a change in parent attitude, knowl-edge, or behavior ” (p. 14). Anticipatory guidance centers on professional opinions, knowledge, and expertise, and often sets the agenda for interventions. 37 Many of the parent educa-tion models have used this concept and practice exclusively.

Participatory Guidance Participatory guidance or guided participation refers to a concept and approach to learning that emphasizes the child as an active and responsible learner in structured and unstructured activities and in forming diverse relationships with caregivers. 119,138 The hallmark of participatory guidance is mutual responsiveness of the individuals involved in that it focuses simultaneously on individual, interpersonal, and cultural processes of learning. Emphasis is placed on how the caregiver structures and guides the child ’ s learning experi-ences in novel and routine situations by fi rst creating a common ground for understanding. Because the caregiver determines the goal and is guided to discover solutions, there is a greater chance the intervention will carry over and become a habit or routine. This approach relies on under-standing the caregiver role within the family system and expectations the family has for the child. Pridham, et al. 114 described the guided participation process to include steps that the guide has in mind from the beginning of the activity to ultimately transfer the responsibility of primary problem-solving from the guide to the caregiver.

APPLICATION TO PRACTICE: AN INTERVENTION ENCOUNTER: SEEKING A COMMON GROUND

Ordinarily, families of children with disabilities begin with little knowledge of the health care and educational systems and lack a sense of their own competence in terms of what may be suitable for their children. Transitions from one setting (e.g., early intervention) to another (preschool) are also accompanied by knowledge gaps and uncertainties. Similarly, therapists start with little information about the child and family other than what may be written on referral forms. The traditional approach has been for physical thera-pists to begin the encounter with an interview of families to obtain information about the child ’ s birth and developmen-tal history, as well as medical and other interventions. Occasionally the interview may include the family structure and physical home environment. This fi rst step, although appropriate, is limited in that it overlooks that parents of children with developmental delays or disabilities con-stantly try to bridge the gap between what is known and unknown about their child ’ s condition and prognosis. To

have if they are to form meaningful and successful partner-ships necessary to optimize child outcomes, present an example of what we consider a contextual assessment process, and conclude with a brief example of an intervention approach that intended to maximize information exchange between the professional and caregivers.

KNOWLEDGE TRANSLATION FOR CAREGIVERS AND CHILDREN MODEL

Parent (or caregiver) education is the most commonly used intervention approach and is seen as a vehicle through which to bridge professional information and child outcome. A review of programs that focused on parents as teachers of their children and home visitation, however, reported poor correlations between maternal and child outcomes. 58 Overall all program effects have also been short term, suggesting limi-tations in carry-over or caregiver competency and the need to rethink strategies used in by professionals. We have used information from teaching and learning paradigms and cul-tural childrearing frameworks to develop and test the Knowl-edge Translation for Caregivers and Children (KT for CACH), a model of knowledge translation from professional to parent to child ( Figure 27-5 ). The model is multifactorial and inter-active: First it capitalizes on participation as a form of social learning, communication, and behavior change. 118,119 Second, it carefully titrates anticipatory forms of guidance and instruc-tion into the participatory exchange. 8 Third, the model maxi-mizes information sharing through vignettes. 9 Fourth, it creates frequent opportunities for self-evaluations as contexts for meta-awareness and behavior change. 3 The model bal-ances professional skill-orientated approaches with social realities of cultural expectations. 8,106 We will apply this infor-mation to a case scenario, but fi rst we will explain the concepts included in the model and described in the approach.

Figure 27-5 The Knowledge Translation for Caregivers and Children model.

Participatory Guidance

Caregiver demonstrationTherapist feedbackVideotapingPerformance evaluation

Caregiving Environment

Caregiver information

Anticipatory Guidance

Evidence-basedinformation

Common Groundof Understanding

Caregiver and therapist competence

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Physical Therapist Competencies Gathering information about children ’ s environments requires advanced competency in skillful interviewing and observation. Skillful interviewing is also characterized by the ability to engage in active listening. A therapist must be able to hear expressions of childrearing beliefs, values, isolation, stress, and resilience. A detailed discussion on interview skills is beyond the scope of this chapter. Literature on effective interviewing and observation is extensive. 1,45,46,111,123 Because many of the interactions and relationships discussed previously are nonverbal, therapists must also be skillful observers. Observation of movement, a skill that most thera-pists are accustomed to, must be extended to include obser-vations of a milieu of social and economic interactions that form the context within which the child functions and par-ticipates. A therapist must be able to see dyadic exchanges, responsiveness, parenting styles, stress, engagement, and cues. The long-term benefi ts that accrue from attempting to understand the milieu of the child and his or her environ-ment can be dramatic, albeit time consuming.

GATHERING INFORMATION ABOUT THE ENVIRONMENT

As pointed out previously, child development and outcome are shaped by so many connected environmental factors that identifying and assessing them all would be diffi cult if not close to impossible. The assumption made in this chapter is that the intervention encounter should be team based. Woods and Lindeman 153 proposed a framework to gather and share information and described fi ve strategies to engage a family in the intervention process. The fi ve strategies include (1) moving interviews to a conversation, (2) com-munity mapping, (3) having follow-up conversations when using questionnaires and checklists, (4) problem-solving discussions, and (5) environmental scans. The following suggestions are based on problem solving and are aimed at improving reciprocity, encouraging and maximizing information sharing, and building on parent-therapist collaboration: 1. Begin the interview process with open-ended questions,

moving on to close-ended questions, and fi nally to “ why ” questions.

2. Map the caregiving environment. Community mapping is a process in which the family identifi es their child ’ s natural learning activities. Ask specifi c questions about opportunities available in the community that include those activities.

3. Provide families with paper questionnaires and checklists used to gather demographic information and engage them in follow-up conversations and questions about the checklists/questionnaires.

begin to bridge the gap, using the Knowledge Translation for Caregivers and Children (KT for CACH) model, the initial encounter should focus on seeking a common ground for communication and understanding . In other words, thera-pists need to reassure the family that the information gaps exist on both sides. Seeking a common ground for commu-nication and understanding involves using information exchange to ensure mutual comprehension. 119 This is par-ticularly important when working with families from diverse cultures or beliefs.

A common ground for understanding is also a central ingredient of collaboration. Collaboration is a shared respon-sibility whose intent is to capitalize on individual strengths and diversity and to minimize biases. During the initial encounter, families of children with disabilities may rely on physicians, physical and occupational therapists, and case managers for most decisions relating to their child. Yet many families have their own intervention ideas about raising chil-dren, including solutions to health-related problems. Some families seek professional help only as a last resort. This puts both the family and the therapist in a learner/expert posi-tion. The therapist needs to explain his or her role to the family and at the same time learn about what the family has to offer. Elements of successful collaborations have been pro-posed. 149 Initially encounters may be stressful, particularly when roles and needs are not well defi ned. However, the ultimate goal should be to create a match between the thera-pist ’ s understanding of the caregiving environment and the parents ’ understanding of the diagnosis and intervention process. Collaboration in seeking, gathering, and sharing information happens to also be a hallmark of family-centered intervention. Ultimately, true collaboration occurs when information exchanged has reached a level that enables each partner to guide the planning of the examination and goal setting. True collaboration, however, also hinges on the com-petencies of the partners.

Caregiver Competence Most families of children with disabilities are also families of children who are typically developing. As such, most have been successful in caring for and teaching their children without “ outside ” intervention. Therefore, during the initial encounter, therapists should not only explicitly acknowledge this competence but also use it as a basis for determining information gaps. For example, fi nding out about the family ’ s daily routines within their proximal and distal environments before or after the diagnosis of the child with disabilities will help determine the extent to which the family has curtailed or enhanced its routines and participation in neighborhood events. Most families may demonstrate the necessary skills to engage in information exchange, but some may need more encouragement. The family-centered approach accepts that power resides within the family, but that the family can elect to share the responsibility with the professional.

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family centered, culturally relevant, and environmentally appropriate. The complex and multifactorial nature of the interactions among environmental determinants that shape child outcomes underscore the need for therapists to continually (1) rethink how they provide services to children and their families, (2) revise family education approaches, (3) reexamine parent-professional collaboration, and (4) reinvest in cultural competence. Four summary considerations are provided. First, conceptual frameworks are necessary to explain the infl uence of the environment on service provision and vice versa because many of the factors that shape child and family outcomes are intertwined. Second, willingness by both parties to learn from each other is central to effective family-professional collaboration. Therapists must seek to learn from families just as much as they desire to teach them and are encouraged to establish a common ground of understanding and participatory guidance. Third, the process of cultural competence, which begins with the examination of one ’ s own culture and proceeds to learning about families ’ cultural beliefs and meanings attached to illness or disabilities, is an important aspect of service provision. The caregiving environment can remove or add health inequities seen in children ’ s activity and participation, depending on the therapist ’ s cultural competency. Fourth, the impor-tance of the environment does not take precedence over the role of biologic factors in infl uencing child development and function. On the contrary, best practice requires therapists, together with the child and family, to address impairments in body functions and structures based on an understanding of the child ’ s condition. Effective interven-tion plans must simultaneously address both biologic and environ-mental factors that are important for the child ’ s activity and participation. Therapists are encouraged to consider a child ’ s needs within the larger context of family structure and functioning not only to increase the likelihood of goal attainment but also because recommendations can affect the child and family for years to come ( Figure 27-6 ).

4. Set the stage for problem-solving discussions by engaging in active listening — listen to the caregiver ’ s concerns and problems and follow-up with a discussion in which the therapist is doing most of the probing and facilitating. The goal is to encourage the family to resolve the problem on their own.

5. Together with parents, scan each specifi c environment where the child and family spend most of their time and discuss how the child can participate in each setting. How questions are framed holds the key to the quantity,

quality, and the fl ow of information. Methods that have worked well in qualitative research may be valuable to thera-pists who are inexperienced or having diffi culty collaborat-ing with families. 44 The open-ended ethnographic interview method 45 may provide rich qualitative information in areas such as family structure and functioning, family values, cul-tural childrearing beliefs, daily family routines, stressors and coping strategies, informal and formal support, and level of family participation. However, some families may prefer the questions-and-answers method, self-administered question-naires or assessment scales, or both. 30

Several well-known self-report and observational scales can be used to supplement information gathered from inter-view and to assess other aspects of the caregiving environ-ment. Many address characteristics of the environment and can provide a systematic way of gathering information and most are observational and interview based. Examples include the Home Observation for Measurement of the Environment (HOME), which assesses the quality of care-giving and the home environment that includes aspects of a child ’ s participation in family routines and toys available, 20 the Nursing Child Assessment Teaching Scales (NCATS), 4 which measure parent-child interaction, and the Scale for Assessment of Family Enjoyment within Routines (SAFER), 127 a routines-based interview used to gather information about a family ’ s home and community routines. The Affordances in the Home Environment for Motor Development (AHEMD-SR) is a recently published instrument for paren-tal self-report of the quality and quantity of factor in the home to enhance motor development in children age 18 to 42 months. 50 Other assessment tools address children ’ s par-ticipation in leisure and recreation. These include the Chil-dren ’ s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). 81 The CAPE examines how children and youth participate in everyday activities outside of their school classes. The PAC supple-ments the CAPE by examining children ’ s preferences for involvement in each activity.

SUMMARY

The importance of the environment in shaping children ’ s health, development, function, well-being, and participation is widely accepted. A challenge to pediatric therapists is to determine approaches and intervention strategies that are evidence based, Figure 27-6 Impacting outcomes for years to come.

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The following case scenario examples illustrate how the Knowledge Translation for Caregivers and Children model is applied to organize the physical therapist examination. Rosa is a 5-year-old girl who was diagnosed with medulloblastoma at 8 months with resultant brain stem seizures about six times a day in which her head drops and eyes blink rapidly for about 10 minutes. Rosa walks with a walker because of generalized weakness. She is “ home schooled. ” Rosa has been receiving occupational and speech therapy and recently, at the request of the family, her primary physician has referred her to physi-cal therapy because she still needs help with toileting.

Rosa ’ s father and physician believe that with intensive physical therapy and strength training, she should be able to be independent in toileting. Rosa wears diapers and is placed on the toilet every 11

2 hours with rare, if any, success. Her mother believes that Rosa has a general idea of wiping but won ’ t try to do it. Rosa doesn ’ t fl ush the toilet but will point to the handle. She doesn ’ t help with clothing management; she tells others when she is wet when wearing training pants but “ it doesn ’ t seem to bother her ” when in diapers.

According to reports from the speech and occupational therapists, Rosa shows little fl exibility in dealing with stressful events. Her mother and the therapists disagree on the extent Rosa ’ s behavior is a problem. According to the mother, Rosa is not that diffi cult to deal with, but “ If she wants to do something, she does it, and if you can ’ t do something immediately, she gets upset and cries, and can remain upset for about half an hour. So I just try to be as organized as possible and respond to her needs as best as I can. ”

Step 1: Establishing a Common Ground of Understanding

There are several key concerns and challenges presented by this scenario that call for the need to fi rst establish a common ground of understanding about the problem and expectations, including (1) disagreements about Rosa ’ s behavior problem, (2) expectations of mother and father, (3) the parents ’ understanding of Rosa ’ s diagnosis and prognosis, and (4) cultural childrearing expectations regarding self-care. Interview To establish a common ground of understanding, the physical thera-pist needs to fi nd out how the various family members view the problem, why independence in toileting is important for Rosa ’ s father, what the family thinks is preventing Rosa from being independent in this activity, what they have tried, their evaluation of previous efforts, how long they think it will take for Rosa to complete this activity, and what would happen if Rosa cannot be independent in toileting (cul-tural beliefs and values, understanding of the disability, and conse-quences). The questions must target the understanding of the parents ’ and Rosa ’ s perception of her toileting abilities as well as the caregiv-ers ’ (particularly the mother ’ s) preferred method of teaching and learning. Open-ended questions are well suited not only to allow the family to freely express the information they wish to disclose but to create opportunities for more probing “ why ” follow-up questions. 46

CASE STUDY

Interview techniques such as restating and reframing are believed to be particularly appropriate when trying to understand a sensitive or complex situation. 46 Observation Observation of the mother ’ s teaching and Rosa ’ s learning styles is another essential element in establishing a common ground of under-standing. If the mother is primarily responsible for Rosa ’ s toileting, asking her to demonstrate how she would ordinarily teach Rosa toilet-ing and self-care is the next step. Before the teaching session, the therapist observes how the mother prepares herself, Rosa, and the environment. During the demonstration, the therapist observes the nonverbal exchanges between the mother and Rosa and listens to instructions and verbal interactions. The therapist pays special atten-tion to the level and timing of assistance.

After the demonstration, the therapist asks the mother and Rosa to explain why they do each step the way they do. In establishing a common ground, and within the framework of participatory guid-ance, the rationale is as important as the manner in which the mother teaches the activity. 119 Also important is fi nding out how similar or different the teaching and learning episode would be if performed by other members of the family. Information Exchange The process of gathering and exchanging information should be con-current. Using an anticipatory guidance approach, the therapist pro-vides the family members with information (if they don ’ t already have it) about medulloblastoma and seizures, prognosis, and outcomes of various interventions. Although much of this information is available on the Internet, discussing what parents have found is important. If Rosa ’ s family does not have access to the Internet, the therapist can select and print the information for the family. The therapist is careful to use information that is based on evidence. This requires that the therapist is competent in fi nding, appraising, and sharing research in a manner that is acceptable to the family.

Based on the Knowledge Translation for Caregivers and Children model, the information exchange precedes and guides the examina-tion process. Only after Rosa ’ s parents have understood the diagnosis and prognosis of her condition will they be in a good position to decide whether or not toileting is still a major or only goal and how they want to proceed with assessment of other areas of function. The information, including fi ndings from the interview and observation, will also allow both parties to further explore goals for participation. The fi rst step of the model, establishing a common ground for under-standing, may be a departure from the traditional approach of history taking immediately followed by examination procedures. In essence, we are proposing a two-step process.

Step 2: Exploring Goals and Their Importance to the Family

Based on the information exchange, the family decided to abandon toilet training and instead chose to focus on (1) Rosa ’ s behavior in terms of expressing frustrations more appropriately and reducing her

Continued

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infl exibility, (2) independence in self-grooming, (3) being able to take a bath with very little help, (4) expressing what she wants so other members of the family can help her, and (5) putting on and taking off her training pants. Although these seem like clearly stated goals, the therapist once again began by developing a common ground of understanding the role of these goals in the context of family function-ing, environmental implications, and Rosa ’ s participation. This is where the iterative process of the Knowledge Translation for Caregiv-ers and Children model comes in. The “ why ” questions need to be answered before the therapist and parents can agree on the assess-ments and tools needed, such as the Home Observation for Measure-ment of the Environment 20 and the Pediatric Evaluation of Disability Inventory. 62 The therapist must seek to understand why these goals are important, what the family thinks is preventing Rosa from attain-ing them, what the family members have tried to help Rosa attain the goals, how long they think it will take for Rosa to achieve the goals, and what would happen if Rosa does not.

This information gets at cultural beliefs and values, understanding of the disability, expectations, and consequences. In return, the thera-pist can use anticipatory guidance to offer options about tests and measures and explain their strengths and limitations so that the parents understand what each provides. Anticipatory guidance may also provide the information that parents need to refi ne their under-standing of a team approach to examination, Rosa ’ s health condition, and achievement of goals. The therapist must consistently strive to understand the context of the environment that will play a major role in infl uencing goal attainment. This will take more time, but time well invested. The therapist must also share this information with the speech and occupational therapists and Rosa ’ s primary physician.

Step 3: Goal Setting and Planning

Successful goal setting also hinges on a common understanding of presenting problems and environmental and professional resources. The process of goal setting, therefore, must be a collaborative effort. Family-generated goals are important; however, as illustrated in Rosa ’ s case, families often modify their goals in light of new informa-tion. Consequently, the importance of anticipatory guidance cannot be overlooked. The process for goal setting, using the Knowledge Translation for Caregivers and Children model, is similar to that described in step 2.

Given Rosa ’ s limitations in processing information and problem solving, and the different expectations in school and at home, the two environments where she spends most of her time, prioritization of the goals expressed by the family is essential. Although prioritization is also collaborative process, Wolery 158 proposed six considerations that therapists may use to guide the process: 1. What are the family ’ s priorities and judgment regarding goal

attainment? 2. Will goal attainment increase ease of caregiving? 3. Will goal attainment allow the child to gain access and participate

in an inclusive setting?

CASE STUDY—cont’d

4. Will goal attainment allow the child to learn additional skills? 5. Will goal attainment reduce the possibility of the child being

stigmatized? 6. Will goal attainment improve the child ’ s function in several

environments? In Rosa ’ s case, the goals were prioritized as follows: (1) expressing

what she wants so other members of the family can help her, (2) modifying her behavior in terms of expressing frustrations more appropriately and reducing her infl exibility, (3) putting on and taking off her training pants, (4) obtaining independence in self-grooming, and (5) being able to take a bath with very little help.

Step 4: Intervention Strategies

The approach to implementing intervention strategies using the Knowledge Translation for Caregivers and Children model relies heavily on the participatory guidance approach developed by Rogoff et al. 119 Using a combination of anticipatory and guided participation, therapists must adapt their role as problem solvers to partner with parents to fi nd solutions. During guided participation, the therapist must fi rst observe the caregivers as they teach the various skills stated in the goals and ask the caregivers for explanations of why they use the approaches they do so as to ensure mutual understanding. The therapist may have several ideas to modify the environment (i.e., communication board, chaining events to ensure generalization, physical modifi cations) to promote independence, but must fi rst ask the parents if they have tried any strategies and what the outcomes were. Based on the principles of participatory guidance, the physical therapist may have the background, experience, and knowledge needed to achieve positive outcomes for the child but must fi rst engage the caregiver to participate in the process.

The following are two examples of intervention strategies for goal 1, expressing what she wants so other members of the family can help her; and goal 5, being able to take a bath with very little help. First, the therapist and family must discuss what has been tried before. The family may be asked to demonstrate the techniques. The caregiver ’ s teaching demonstrations are essential elements of the participatory guidance approach. If none of the techniques are con-sidered helpful, then new options must be developed using a problem-solving approach described by Rogoff et al. 119

The following options for the goal “ expressing what she wants so other members of the family can help her ” were discussed and were expanded to address participation: • Label objects in the house with pictures and their names. • Verbalize objects and pictures to Rosa every time she looks

at them. • Begin using different picture boards with two choices; upon success,

increase the number of picture choices. • Reward Rosa when she points to a picture cue or gets a question

correct (e.g., use points that can be used for a reward). • Use of the boards at home, during meals, at school, or when visiting

relatives.

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Sharing Information The therapist shares her analysis of the bathing activity with Rosa and her mother and relates her analysis to Rosa ’ s functional abilities and constraints. The therapist discusses the various options and guides (verbally or physically) mother and Rosa on how to perform the transfer. The following are three potential methods: (1) Rosa sits on the outside edge of the tub and then moves her legs into the tub, (2) Rosa holds onto a grab bar and puts one leg in the tub at a time, or (3) Rosa uses a bathtub bench to lower herself into the tub. The key is not only to educate Rosa and the mother about potential options but also to allow them to select their preferred method. This is par-ticularly helpful if any of the methods can be generalized to other transfer activities. Videotaping the Performance If possible, the therapist might suggest that the family videotape the practice sessions, and then the therapist can review and analyze the tapes with the mother and other caregivers. Research shows that caregivers learn best when they can observe and evaluate their per-formance. Essentially the therapist ’ s role in participatory guidance is that of a coach.

The strategy for the goal “ being able to take a bath with very little help ” is as follows. Establishing a Common Ground First the therapist describes the activity. Then the therapist asks the mother (or other caregivers) about her preferred method of learning and teaching. The therapist asks about other skills that require similar ability and that are part of Rosa ’ s daily activities, such as getting in and out of bed or the car or getting down to the fl oor. Participatory guidance is believed to be effective when an activity is taught within the context of daily routines. 119 Observation The therapist observes the mother teaching the task and asks the mother and Rosa to demonstrate how they go through the entire routine of taking a bath. Observing the mother ’ s teaching and Rosa ’ s learning styles is another key element in participatory guidance. During the demonstration, the therapist observes the mother ’ s posi-tion in relation to Rosa, the level and timing of assistance, and the nonverbal exchanges between the mother and Rosa. The therapist attends to the mother ’ s instructions and verbal interactions. After the demonstration, the therapist asks Rose and her mother why they do each step the way they do.


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903

28 The Special Care Nursery

LINDA KAHN-D ’ ANGELO , PT, ScD • YVETTE BLANCHARD , PT, ScD • BETH MCMANUS , PT, ScD, MPH

Providing services to high-risk infants and their fami-lies in the neonatal intensive care unit is a complex subspecialty of pediatric physical therapy requiring

knowledge and skills beyond the competencies for entry into practice. The newborns in the neonatal intensive care unit (NICU) are among the most fragile patients that physical therapists will treat, and detrimental effects can occur as the result of routine caregiving procedures. Pediatric physical therapists (PTs) need advanced education in areas such as early fetal and infant development; infant neurobehavior; family responses to having a sick newborn; the environment of the NICU, physiologic assessment and monitoring; newborn pathologies, treatments, and outcomes; optimal discharge planning; and collaboration with the members of the health care team. 256 This chapter describes the neonatal intensive care unit and the role of the physical therapist within this setting. Practice in this setting requires knowl-edge of neonatal physiology, development, and health com-plications including prematurity, pulmonary conditions, neurologic conditions, fetal alcohol syndrome, fetal absti-nence syndrome, and pain. A framework for physical therapy examination, evaluation, prognosis, and interventions for infants in the special care nursery is presented. The follow-up of infants after discharge from the intensive care nursery is addressed. Two case studies are presented to apply knowl-edge to practice.

HISTORY OF THE SPECIAL CARE NURSERY Modern neonatal care was born with the development of the incubator by Couveuse in France in 1880. 130 The fi rst text on the premature infant, The Nursling, authored by Budin, a student of Couveuse, was published in 1900. The main principles of neonatal care were support of body tempera-ture, control of nosocomial infection, minimal handling, and provision of special nursing care. Interestingly, nurseries were quiet, and lights were dimmed at night. Dr. Martin Couney, who was one of Budin ’ s students, used these prin-ciples of treatment for the premature infant, and in a bizarre entrepreneurial twist, exhibited them in Chicago for a fee. 234 Dr. Julius Hess attended this exhibition and applied these principles in the late 1940s. Dr. Hess achieved a neonatal

mortality rate for preterm infants of 20%, which was respect-able for the time. In response to the increased survival rate of premature infants reported by Hess, Budin ’ s principles of care were implemented across the United States.

During the 1950s, a number of cities developed centers for the care of premature infants and a number of states developed maternal mortality committees that gathered data to be used as a basis for planning activities directed at pre-venting maternal death. During the 1960s, Arizona, Massa-chusetts, and Wisconsin promulgated standards for maternity units and developed regional perinatal care centers. Reports from these three states and several professional organiza-tions, including the American Medical Association, the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the Academy of Family Physicians, stimulated the development of the regional orga-nization of perinatal services. 93

By the late 1960s, full-term infants with health complica-tions were also being treated in the neonatal nursery. Advances in microlaboratory techniques for biochemical determinations from minute quantities of blood and the development of miniaturized monitoring equipment, venti-latory support systems, and means to conserve body heat improved the care of the neonate with serious illness. 93 Expansion of neonatal pharmacology, widespread use of phototherapy for management of hyperbilirubinemia, and methods of delivery of high-caloric solutions parenterally when oral feeding was not possible also improved the chances for survival of the very sick neonate. In 1975, the emergence of the subspecialties neonatology and perinatology affi rmed the need for practitioners skilled in the care of infants in the high-technology nursery.

During the past three decades, the availability of neonatal intensive care has improved outcomes for high-risk infants, including premature infants and those with serious medical or surgical conditions. 15 Improved survival for very low birth weight and extremely low birth weight infants has been reported during the time frame of 1988 to 2002. 94,160,248 This improvement in survival is related to antenatal steroids, more aggressive resuscitation in the delivery room, and advanced treatments given in the special care nursery includ-ing surfactant therapy. 153

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recommendations have been made to decrease negative effects and actually facilitate development as well as keep the infant alive. Caregivers play an important role in assessing and controlling aspects of the environment such as noise, light, and intensity of medical procedures.

In the 1980s, concern emerged that the typical nursery stay of several weeks may have detrimental effects on later behavior of the infant born at very low birth weight ( < 1500 grams). 130 At that time, the neonatal intensive care nursery was characterized by bright lights both night and day, high noise levels, and the intrusive medical procedures character-istic of high-technology treatment. 54,108

Research ensued on the effects of different sensory inputs during the NICU stay and the concept of neonatal care facili-tating optimal development. This care included modulation of the environment to facilitate development, recognition of infant distress and discomfort, and family-centered care. 3,8,9,104,111 – 113,127 More recently, environmental design of the intensive care nursery and the potential impact on neu-rodevelopmental outcome of the neonate were appraised by representatives from multiple hospitals. 154 Using an evidence-based approach, potentially better practices were identifi ed to support neonatal development. These recommendations included implementation of guidelines for tactile stimula-tion, providing early exposure to mother ’ s scent, minimizing exposure to noxious odors, developing a system for noise assessment of the NICU, minimizing ambient noise near the isolette, and preservation of sleep. Deep sleep is necessary for development of the neurosensory system and the maturing brain and should be facilitated and protected while the neonate is in the intensive care unit. 183

NOISE AND LIGHT The intensive care unit includes many pieces of equipment that contribute to the noise level including respirators and alarms for unacceptable levels of heart rate, respiration, oxygen, temperature, and carbon dioxide exchange. Every-day activities such as conversation, closing drawers, dragging chairs, and tearing tape add to the noise level. Noise is mea-sured on a logarithmic scale and small changes in measured decibels (db) are detectable. As a frame of reference, conver-sation may be at a 60-db level and dragging a chair may be at an 80-db level. Bremer et al. found that high noise levels from alarms and telephones can cause an increase in auto-nomic response that puts premature infants at risk for bra-dycardic and hypoxic episodes. 48 The American Academy of Pediatrics recommends noise levels not exceed 45 db with noise levels above 50 db only 10% of the time and a maximum of 65 db. 275 Darcy, Hancock, and Ware found that noise levels in several NICUs in the mid-Atlantic region of the United States were often louder than the 50-db level and that 60 db levels were exceeded at times. 78 Lasky and Williams followed 22 infants with extremely low birth weight ( < 1000 grams) throughout their stay in a NICU that was constructed with

ORGANIZATION OF PERINATAL SERVICES

Neonatal intensive care units are designed to meet a wide range of special needs, from the monitoring of apparently well infants at risk of serious illness to the intensive treat-ment of infants with acute illness. The March of Dimes report Toward Improving the Outcome of Pregnancy pub-lished in 1976, articulated the concept of regionalized peri-natal care with three levels of maternal and neonatal care. 71 A subsequent report restated the importance of regionaliza-tion and recommended changes in designations from levels I, II, and III to basic, specialty, and subspecialty with expanded criteria. 199 By the beginning of the 21st century the number of neonatal intensive care units in the United States had increased to 880 (120 level II, 760 level III). 107 The three levels of neonatal care and capabilities within levels recommended by the American Academy of Pediatrics are presented in Box 28-1 . 15

THE NEONATAL INTENSIVE CARE ENVIRONMENT

As depicted in Figure 28-1 , the newborn in the intensive care nursery transitions from the buoyant, warm, enclosed, and relatively quiet and dark environment of the womb to a bright, often noisy, technology fi lled, gravity-infl uenced environment and is subjected to procedures that often cause pain and discomfort.

The newborn is extremely vulnerable to the environmen-tal effects of the intensive care nursery. Many studies and

Box 28-1 Hospital Perinatal Care Levels

LEVEL I: BASIC CARE

Evaluate and provide postnatal care to infants 35 to 37 weeks gestation, stabilize infants < 35 weeks ’ gestation until transfer

LEVEL II - SPECIALTY CARE

IIA: Provides care for moderately ill infants > 32 weeks ’ gestation

IIB: Provides mechanical ventilation for brief periods

LEVEL III: SUBSPECIALTY CARE

IIIA: Provides care for infants > 28 weeks, performs minor surgical procedures

IIIB: Provides care for infants < 28 weeks ’ gestation, provides advanced respiratory support (high-frequency ventilation); advanced imaging, pediatric surgical specialists, access to pediatric medical subspecialists

IIIC: Provides extracorporeal membrane oxygenation (ECMO) and complex cardiac surgery with cardiopulmonary bypass

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CHAPTER 28 The Special Care Nursery 905

recommended the following strategies to minimize the risk of visual impairments while the infant is in the NICU: pro-tecting REM sleep, dark periods; limiting intense noise and other unnecessary sensory stimulation; and paying careful attention to the sensory environment of each infant. 112

There is a growing body of evidence on the developmen-tally appropriate environment for neonates. 64,275 Private rooms are an alternative to the large multi-isolette/crib ward that currently characterizes the NICU. Noise levels decreased and catheter-associated bloodstream infections fell after infants moved from a ward to a single room. 271 An obvious disadvantage of the single room model is staff coverage.

PREMATURITY AND LOW BIRTH WEIGHT More than 500,000 infants are born prematurely (gestation of less than 37 weeks) in the United States every year. 114 Approximately 1% of live births are very preterm with ges-tational age younger than 32 weeks. 279 Preterm birth is a leading cause of infant mortality and morbidity, accounting for over 70% of neonatal deaths and half of long-term neu-rologic disabilities such as cerebral palsy, cognitive impair-ment, and behavioral problems. 66,178 The preterm birth rate has increased from 9% to 12% since 1981. 114 Infants born prematurely or who are small for gestational age (SGA) are divided into three major categories: low birth weight (LBW), from 1501 to 2500 grams; very low birth weight (VLBW), 1000 to 1500 grams; and extremely low birth weight (ELBW), less than 1000 grams.

The causes of preterm birth are not clear but seem to involve an interaction of multiple factors including genetic, social, and environmental factors. 279 Spontaneous preterm

a high priority on noise abatement and found that the neo-nates were exposed to noise levels averaging 56 db. 152 Noise levels increased with the use of older model ventilators and an open bed rather than an isolette. The authors concluded it is unlikely that newborns in the intensive care nursery consistently experience noise that does not exceed the rec-ommended levels. Hearing loss has not been linked specifi -cally to noise levels, but a synergistic relationship may occur with excessive nose and ototoxic drugs such as gentamicin. 49 Sound levels of the NICU may interfere with frequency dis-crimination and pattern recognition. 111

Slevin et al. studied the impact of a designated “ quiet period, ” which included asking staff to keep noise levels at a minimum, switching phones to a fl ashing light system, and postponing caregiving activities if possible. 236 During the “ quiet period, ” the researchers noted signifi cant reduc-tions in infants ’ median diastolic blood pressure and mean arterial pressure. 236 Other simple techniques such as covering the isolette with a blanket or placing a sound absorbing panel in the isolette help decrease the sound levels. 12,225 It is interesting to note that approximately half of the neonatal nurses interviewed reported that they never or rarely limit their conversations near the incubators/cribs. 1 Noise can also interfere with the development of sleep patterns in neonates.

Infants younger than 32 weeks gestational age have little ability to limit the amount of light entering the eyes because of thinness of the eyelids. 112 High light levels and decreased light/dark cycles may adversely affect newborn patients. 14 Recommended light levels are less than 646 lux (60 foot-candles) and are reported to be met more often than recommendations for noise levels. 152 Graven

Figure 28-1 Infant surrounded by typical NICU equipment. (Data from American Academy of Pediatrics, Policy Statement, Levels of Neonatal Care, Pediatrics , vol 114,

No 5, 2004 .)

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Gestational age is also determined by ultrasound, measure-ments such as weight; length; head circumference; wrist, hip, and shoulder ranges of motion; and amniotic fl uid analy-sis. 224 Although gestational age is usually determined by phy-sicians or nurses, the physical therapist should be familiar with how gestational age is determined.

NEONATAL HEALTH CONDITIONS ASSOCIATED WITH IMPAIRMENTS IN BODY FUNCTIONS AND STRUCTURES

Several pulmonary, neurologic, cardiac, and other health conditions in neonates are associated with increased risk for impairments in body functions and structures that affect cognitive, motor, sensory, behavioral, learning, and psychosocial development that may result in long-term activity limitations and participation restrictions. 153 The physical therapist providing services in the NICU should have a working knowledge of physiology of neonates, pathophysiology and associated impairments in body functions and structures, and how impairments affect the infant ’ s behavior. Practice in the NICU is a complex sub-specialty of pediatrics and knowledge and skills should be obtained through advanced didactic and practical educa-tion. Clinical guidelines and clinical training models for neonatal physical therapy are outlined by Sweeney, Heriza, and Blanchard. 256

PULMONARY CONDITIONS

RESPIRATORY DISTRESS SYNDROME

Respiratory distress syndrome (RDS), or hyaline membrane disease, is the single most important cause of illness and death in preterm infants and is the most common single cause of respiratory distress in neonates. 247 RDS occurs in 10% of all premature infants in the United States. The percentage increases to 50% to 60% for infants born less than 29 weeks gestational age. 17,68 The principal factors in the pathophysiology of RDS are pulmonary immaturity and low production of surfactant. Low surfactant produc-tion results in increased surface tension, alveolar collapse, diffuse atelectasis, and decreased lung compliance. These factors cause an increase in pulmonary artery pressure that leads to extrapulmonary right-to-left shunting of blood and ventilation-perfusion mismatching. Clinical manifestations of RDS include grunting respirations, retractions, nasal fl aring, cyanosis, and increased oxygen requirement after birth. Prophylactic use of antenatal steroids to accelerate lung maturation in women with preterm labor of up to 34 weeks signifi cantly reduced the incidence of RDS and decreased mortality. 68

Treatment goals for RDS include improvement in oxy-genation and maintaining optimal lung volume. 144 The type of intervention depends on the severity of the respiratory

delivery and birth has recently been described as a common complex disorder like heart disease, diabetes, and cancer. 279 Criteria for complex diseases include family history, recur-rence, and racial disparities. 114 American black women had 1.5 times the rate of preterm birth and 4 times the rate of infant mortality because of preterm births compared with white women. 146 Approximately 40% of premature births are believed to be caused by intrauterine or systemic infections or both which are not diagnosed until the onset of labor. 32 Pregnancy-specifi c stress is associated with smoking, caffeine consumption, and unhealthy eating, and it is inversely cor-related with healthy eating, vitamin use, exercise, and gesta-tional age at delivery. 167 Maternal hemorrhage and pathologic distention of the uterus are associated with preterm labor. 75 Infants born after assisted reproduction have a lower birth weight and gestational age when compared to matched controls. 172

There has been a signifi cant increase in survival of infants with VLBW and ELBW 153 as a result of more aggressive deliv-ery room resuscitation, surfactant therapy, and a decreased rate of sepsis. 94,280 Approximately half of children surviving extremely low-birth-weight deliveries have subsequent mod-erate to severe neurodevelopmental disabilities. 153 Brain injury, retinopathy of prematurity, bronchopulmonary dys-plasia, and neonatal infection increase the risk of mortality or neurosensory impairment. 27

There is a national focus on preventing preterm birth spearheaded by the March of Dimes National Prematurity Campaign of 2003, recently extended to 2020. 176 The Prema-turity Research Expansion and Education for Mothers who Deliver Infants Early (PREEMIE) Act (P.L. 109 – 450) was passed in 2006 with a subsequent Surgeon ’ s General Confer-ence on the Prevention of Preterm Birth in 2008. 191 The conference objectives were to (1) increase awareness of preterm birth in the United States; (2) review key fi ndings on causes, consequences, and prevention of prematurity; and (3) establish an agenda for public and private sectors to address this public health problem. Conference recommen-dations included (1) increased research in medicine, epide-miology, psychosocial, and behavioral factors relating to prematurity; (2) professional education and training; (3) communication and outreach to the public; (4) addressing racial disparities, and (5) improvement of quality of care and health services.

ASSESSMENT OF GESTATIONAL AGE The determination of gestational age of infants in the special care nursery is crucial to interpretation of fi ndings from neurologic and behavioral examinations. The New Ballard Score (NBS) is the most widely used assessment of gesta-tional age. 241 The NBS assesses neuromuscular maturity (such as posture), physical maturity (such as presence of lanugo), and external genitalia to determine gestational age from 20 to 44 weeks and is accurate within 1 week. 241

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have no evidence of intracranial bleeding, require less than 10 days of assisted ventilation, and have reversible lung disease. 250 ECMO is contraindicated for infants younger than 34 weeks of age because of high rates of intracranial hemor-rhage, perhaps because of systemic anticoagulation neces-sary with ECMO or to abnormal cerebrovascular pressures and fl ows accompanying ECMO. ECMO is used to manage intractable hypoxemia in near-term infants, newborns with meconium aspiration, RDS, pneumonia sepsis, and congeni-tal diaphragmatic hernia. 68

The prognosis of infants with RDS is correlated with the severity of the original disease, but today few infants die of acute respiratory failure, but rather from complica-tions of extreme prematurity such as infections, necrotizing enterocolitis, and intracranial hemorrhage. 143 Infants who do not require assisted ventilation recover without developmen-tal or medical sequelae, but the clinical course of the very immature infant may be complicated by air leaks in the lungs and BPD. Infants who survive severe RDS often require fre-quent hospitalization for upper respiratory tract infections and have an increased incidence of neurologic sequelae. 133

Emerging technologies for management of RDS include inhalation of nitrous oxide, liquid ventilation, or a hybrid of liquid and gas ventilation. The rationale for using liquid ventilation is to decrease alveolar surface tension by elimi-nating the air-liquid interface by fi lling the alveolus with liquid. 68 Inhalation of nitrous oxide helps decrease pulmo-nary artery resistance, cytokine-induced lung infl ammation, and increase gas exchange. Findings regarding the use of nitrous oxide (NO) and prevention of chronic lung disease and neurologic injury are inconclusive. 21 Inhaled nitric oxide for severe RDS is an experimental treatment that may decrease chronic lung disease and mortality. However, increase in intracranial hemorrhage caused a termination of a study in 2006. 131

BRONCHOPULMONARY DYSPLASIA AND CHRONIC LUNG DISEASE OF INFANCY

Bronchopulmonary dysplasia (BPD) and chronic lung disease of infancy (CLD) are two chronic pulmonary condi-tions that are caused by incomplete or abnormal repair of lung tissue during the neonatal period. 129 The National Insti-tute of Child Health and Human Development defi ned infants with mild BPD as requiring oxygen supplementation for a total of at least 28 days, whereas infants with moderate or severe BPD require oxygen supplementation or ventila-tory support at 36 weeks postmenstrual age and for more than 28 days. 90 CLD is diagnosed at 36 weeks ’ postmenstrual age, if there is a continued need for supplemental oxygen, abnormal physical examination, and abnormal chest radio-graph. Chronic lung disease (CLD) occurs in 57% to 70% of infants born at 23 weeks gestational age; 33% to 89% of infants born at 24 weeks gestational age; and 16% to 71% of infants born at 25 weeks gestational age.

disorder and includes oxygen supplementation, assisted ventilation, surfactant administration, and extracorporeal membrane oxygenation (ECMO). Continuous positive airway pressure (CPAP) or positive end – expiratory pressure (PEEP) is applied to prevent volume loss during expiration. Nasal and nasopharyngeal prongs are used with positive end-expiratory pressure ventilators. Mechanical ventilation via tracheal tube is used in severe cases of RDS. (See Chapter 23 for a more detailed description of ventilators.) Mechani-cal ventilation may injure the lungs of premature infants through high airway pressure (barotrauma), large gas volumes (volutrauma), alveolar collapse and refi ll (atelecto-trauma), and increased infl ammation (biotrauma). 22

The new generation of ventilators is equipped with microprocessors enabling effective synchronized (patient-triggered) ventilation. 143 High-frequency oscillatory ventila-tion (HFOV) was developed with the goal of decreasing complications associated with mechanical ventilation. Con-ventional intermittent positive pressure ventilation is pro-vided 30 to 80 breaths per minute, whereas HFOV provides “ breaths ” at 10 to 15 cycles per second or 600 to 900 per minute. At this time, evidence is insuffi cient to support the routine use of HFOV. 125

Prophylactic use of surfactant for infants judged to be at risk of developing RDS (infants less than 30 to 32 weeks gestation) has been demonstrated to decrease the risk of pneumothorax, pulmonary interstitial emphysema, and mortality. 247 Early administration of multiple doses of natural or synthetic surfactant extract results in improved clinical outcome and appears to be the most effective method of administration. When a choice of natural or synthetic surfactant is available, natural surfactant shows greater early decrease in requirement for ventilatory support. 240,287 Newer synthetic surfactants include whole surfactant proteins or parts of the proteins (peptides). A recent clinical trial showed that these preparations decreased mortality and rates of necrotizing enterocolitis with other clinical outcomes being similar to those of natural surfactant preparations. 211 A recent pilot study showed that an inhaled steroid, budesonide, delivered intratracheally with surfactant admin-istration to very low birth weight infants with severe RDS reduced mortality and chronic lung disease with no immedi-ate adverse effects. 285

Extracorporeal membrane oxygenation (ECMO) is a technique of cardiopulmonary bypass modifi ed from tech-niques developed for open-heart surgery that are used to support heart and lung function (for review of ECMO and implications for pediatric physical therapy, see Pax Lowes & Palisano 207 ). In newborns with acute respiratory failure, the immature lungs are allowed to rest and recover to avoid the damaging effects of mechanical ventilation. Because of the need for systemic administration of heparin and the resultant risk of systemic and intracranial hemor-rhage, ECMO is reserved for use with infants who are at least 34 weeks of gestational age, weigh more than 2000 g,

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in the amniotic fl uid is a result of other events such as stressed labor, postmaturity, and depressed cord pH that may have predisposed the fetus to severe pulmonary disease. 68 It is recommended that the infant with depressed physiologic function and meconium-stained fl uid be suctioned endotra-cheally as pharyngeal suctioning does not reduce MAS. 263 Antibiotics are often given until bacterial infection is ruled out. The infant is hypersensitive to environmental stimuli and should be treated in the quietest environment possible. According to a Cochrane Review in 2007, surfactant admin-istration may reduce the severity of MAS and decrease the number of infants requiring ECMO. 91,233 Obstetric approaches to the prevention of MAS such as intrapartum surveillance, amnioinfusion, and delivery room management have not demonstrated a decrease in MAS. 284 Approximately 20% of infants with MAS demonstrated neurodevelopmental delays up to 3 years of age even though they responded well to conventional treatment. 30

NEUROLOGIC CONDITIONS

PERIVENTRICULAR LEUKOMALACIA

Periventricular leukomalacia (PVL) is the predominant form of brain injury and the leading known cause of cerebral palsy (CP) and cognitive impairments in premature infants. 82 PVL is a symmetrical, nonhemorrhagic, usually bilateral lesion caused by ischemia from alterations in arterial circulation. 281 Male gender, premature rupture of membranes, preeclamp-sia, reduced carbon dioxide in the blood, and intraventricu-lar hemorrhage (IVH) are associated with PVL. 123 PVL is characterized by necrosis of white matter dorsal and lateral to the external angles of the lateral ventricles. The area affected includes the white matter through which long descending motor tracts travel from the motor cortex to the spinal cord. Because the motor tracts involved in the control of leg movements are closest to the ventricles and therefore more likely to be damaged, spastic diplegia is the most common motor impairment ( Figure 28-2 ). If the lesion extends laterally, the arms may be involved, with resulting spastic quadriplegia. Visual impairments may also result from damage to the optic radiations. 281

PVL is caused by a reduction in cerebral blood fl ow in the highly vulnerable periventricular region of the brain where the arterial “ end zones ” of the middle, posterior, and anterior cerebral arteries meet and is often associated with intraven-tricular hemorrhage (IVH). 268 Decreased cerebral blood fl ow leads to ischemia and a decrease in antioxidants. This results in generation of free oxygen radicals and glutamate toxicity factors that contribute to periventricular leukomalacia. The incidence of white matter damage in premature infants increases with decreased gestational age because of the immature vascular supply, impairments in cerebral auto-regulation, and damage to premyelinating oligodendrites from free radicals. 145,268 PVL also affects subplate neurons

The cause of BPD is multifactorial with pathogenesis being associated with immature lung tissue, barotraumas (high airway pressure), and volutrauma (large gas volumes) resulting from mechanical ventilation. Atelectotrauma (alveolar collapse and reexpansion) occurs with increased infl am mation and an imbalance in infl ammatory and anti-infl ammatory chemical mediators (cytokines) in infants with ELBW. 33 Neonatal sepsis especially because of candi-demia, a systemic yeast infection, is associated with CLD. 150 Boys are at greater risk for developing CLDs, perhaps because of a lag of 1 to 2.5 weeks in pulmonary and cerebral matura-tion compared with girls.

Prevention of premature birth is the most effective pre-ventive measure for BPD. 33 Antenatal steroids are still the most effective intervention in lung maturation. A decreased incidence of BPD was reported after management that included early administration of surfactant, immediately fol-lowed by nasal CPAP, lower oxygen saturation targets of 90% to 95%, and early parenteral amino acid supplementation. 103 The use of superoxide dismutase enzymes as an antioxidant has been investigated for treatment of BPD and CLD. 129 Management of BPD includes oxygen supplementation with oxygen saturation less than 95%, avoidance of mechanical ventilation if possible, diuretics after the fi rst week of life, and steroids to help wean from oxygen during later stages of treatment. 33 Chronic lung disease is a major morbidity infl u-encing development and is associated with poor nutrition, growth, feeding, prolonged hospitalization, and episodes of nosocomial infection. Treatment with early corticosteroids is associated with gastrointestinal bleeding and intestinal per-foration, and there is a possibility of neurodevelopmental impairment. 120 Up to 50% of infants with BPD are hospital-ized in the fi rst year following discharge from the NICU. 137,239 Respiratory symptoms in patients with BPD persist into early adolescence 121,269 although most studies have shown no reduction in exercise capacity in children with BPD. 34 BPD seems to be associated with a global developmental impair-ment which correlates with BPD disease severity. 90,137 The reader is referred to Chapter 23 for information on children who require long-term ventilator assistance.

MECONIUM ASPIRATION SYNDROME

Meconium aspiration syndrome (MAS) is defi ned as respira-tory distress in an infant born through meconium-stained amniotic fl uid whose symptoms cannot be otherwise explained. 92 It can be characterized by early onset respiratory distress in term and near-term infants with symptoms of respiratory distress, poor lung compliance, hypoxemia, and radiographic fi ndings of hyperinfl ation and patchy opacifi -cations with rales and rhonchi on auscultation. 278 Because of the frequent occurrence of air leaks in these infants, positive pressure ventilation is contraindicated. It is unclear whether the meconium itself causes pneumonitis severe enough to lead to the above symptoms or if the presence of meconium

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painful procedures and examinations, handling, and exces-sive noise. Adequate perfusion can be maintained with appropriate treatment if the infant exhibits apnea and severe bradycardia. Outcomes of PVL include increased incidence of CP if cysts are visible with ultrasound, whereas cognitive impairment may be the outcome if ultrasound shows increased periventricular echogenicity without cysts. 86

GERMINAL MATRIX-INTRAVENTRICULAR HEMORRHAGE AND PERIVENTRICULAR HEMORRHAGE

Germinal matrix-intraventricular hemorrhage (GM-IVH) is the most common type of neonatal intracranial hemor-rhage. GM-IVH occurs in neonates younger than 32 weeks of gestational age and weighing less than 1500 grams with an inverse relationship between gestational age and inci-dence of GM-IVH. The incidence of GM-IVH has declined and ranges from 15% to 20%. 173 Most hemorrhages occur within the fi rst 24 hours after birth and progress over 48 hours or more. By the end of the fi rst postnatal week, 90% of hemorrhages have reached their full extent. Papile devel-oped a four-level grading scale based on ultrasound scan to classify hemorrhages. 204 Grade I is an isolated germinal matrix hemorrhage. Grade II is an IVH with normal-sized ventricles that occurs when hemorrhage in the subependy-mal germinal matrix ruptures through the ependyma into the lateral ventricles. Grade III is an IVH with acute ven-tricular dilation, and grade IV is a hemorrhage into the periventricular white matter. Perinatal events that can lead to increased cerebral blood fl ow and GM-IVH include respi-ratory distress, apnea, hypotension, rapid volume expansion, routine caregiving interventions, and environmental stress such as noise and light. 38

GM-IVH pathogenesis involves complex interaction of intravascular, vascular, and extravascular factors. This lesion involves bleeding into the subependymal germinal matrix, which is a gelatinous area that contains a rich vascular network supplied mainly by Heubner ’ s artery, a branch of the anterior cerebral artery; branches of the middle cerebral artery; and the internal carotid. This matrix is prominent from 26 to 34 weeks of gestation and is usually gone by term. The vessels that traverse the matrix are primitive in appear-ance and structure, with a single layer of endothelium without smooth muscle, elastin, or collagen, and the area is devoid of supportive stroma. Hemorrhage occurs from these primitive capillaries. In a small number of preterm infants, hemorrhage may occur from the choroid plexus or the roof of the fourth ventricle ( Figure 28-3 ). Cerebral autoregulation of the blood vessels normally protects the brain from signifi cant alterations in cerebral blood fl ow. Hypoxia and hypoxemia in the neonate interfere with cerebral autoregulation 85 and increase the risk of vessel rupture. 247 Positive-pressure ventilation can be trans-mitted to capillaries of the germinal matrix, which can

which lie just below the developing cerebral cortex until programmed apoptosis (cell death). Subplate neurons play an essential role in axonal targeting of thalamocortical syn-apses, and their loss may contribute to motor, visual, and cognitive impairments. 82 Systemic hypotension associated with diffi cult resuscitation at birth and ECMO are also asso-ciated with PVL. Patent ductus arteriosus and severe apneic spells are other contributing factors, particularly after the fi rst week of life. 145

Serial ultrasonography one week following birth and magnetic resonance imaging are diagnostic tools for peri-ventricular leukomalacia. 82 White matter echodensities and echolucencies on high-resolution cranial ultrasonography are predictive of neurologic sequelae associated with cerebral palsy. 86 Serial ultrasonographic studies are important because the evolution of periventricular echodensity is related to prognosis. Early periventricular echodensity that resolves during the fi rst weeks of life is not correlated with childhood disability. Formation of cysts as a result of dissolution of brain tissue secondary to infarction, however, is correlated with cerebral palsy and cognitive impairments. Cerebral palsy occurs in more than 90% of infants who develop bilat-eral cysts larger than 3 mm in diameter in the parietal or occipital areas. 86

Medical management of PVL includes prevention of intrauterine asphyxia, maintenance of adequate ventilation and perfusion, avoidance of systemic hypotension, and control of seizures. 38,268 Prevention of intrauterine asphyxia includes identifi cation of high-risk pregnancies, fetal monitoring, fetal blood sampling, and cesarean section as indicated. Maintenance of adequate ventilation includes avoiding common causes of hypoxemia such as inappropri-ate feeding, inserting or removing ventilator connections,

Figure 28-2 Diagram of cortical spinal tracts. Dotted circular areas indicate periventricular leukomalacia that would be expected to affect descending fi bers for control of lower extremity. (From Volpe, JJ. Neurology of the newborn , 2 nd edition, Philadelphia: WB Saunders, 1987, p 314 .)

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predictor of outcome at 2 to 3 years for VLBW preterm infants. 82

Efforts to prevent IVH have met with varying degrees of success. Lower rates of IVH have been reported in NICUs with higher patient volume and higher neonatologist-to-house staff ratio. 258 Prevention of neonatal hypoxic events as such as respiratory distress, apnea, hypo-tension and rapid volume expansion, hypercarbia, excessive caregiving interventions, and environmental stress such as excessive noise or light may decrease incidence of IVH. 38 A review of the use of phenobarbital did not reveal a signifi cant decrease in occurrence or severity of IVH, but there was an increased risk for ventilation need. 276 Infants treated with indomethacin have been shown to have a decrease in incidence and severity of IVH. 228 Outcomes for infants treated with indomethacin are better for boys than girls. 188

Interventions for IVH include acute treatment, pharma-cologic therapy, and management of ventricular dilation. 38 Acute treatment includes physiologic support to maintain oxygenation, perfusion, body temperature, and blood glucose level. Physical handling is minimized. The infant should be positioned in prone or side lying with the head in midline or to the side without neck fl exion. Management of ventricu-lar dilation includes ventriculoperitoneal shunting or tem-porary ventricular draining. 38,288

Outcomes of IVH depend on severity and extent of the hemorrhages and the presence of associated problems. Infants with a small or mild hemorrhage survive and have a low incidence of neurologic complications. Infants with moderate hemorrhage have a mortality rate of 5% to 20%, and ventricular dilation develops in 15% to 20% of survivors. When bleeding is severe, mortality is 50%. The incidence of neurologic conditions such as cerebral palsy,

impede venous return, leading to increased pressure and rupture. The most vulnerable area of the venous drainage system is at the level of the foramen of Monro and the caudate nucleus, the most common site of GMH-IVH. 38

Extravascular factors also contribute to GMH-IVH. The germinal matrix is highly vascularized and the capillary bed is embedded in gelatinous material that provides poor support for the fragile blood vessels. This along with exces-sive fi brinolytic activity in the periventricular area may result in the extension of a small bleed, which may then rupture into the ventricles. 268 Environmental and genetic factors also may affect the risk for IVH as well as maternal infection such as chorioamnionitis. 182 Neuropathology associated with IVH includes hydrocephalus, germinal matrix destruc-tion, cyst formation, and accompanying hypoxic-ischemic lesions.

The signs and symptoms of GMH-IVH may range from subtle and nonspecifi c to catastrophic. Clinical signs include a decreasing hematocrit, a full anterior fontanelle, changes in activity level, impaired visual tracking, increased muscle tone of lower limbs, neck fl exor hypotonia, and brisk tendon refl exes. 268 Catastrophic deterioration involves major acute hemorrhages with clinical signs of stupor progressing to coma, respiratory distress progressing to apnea, generalized tonic seizures, decerebrate posturing, fi xation of pupils to light, and fl accid quadriparesis.

The diagnosis of GMH-IVH is usually made by cranial ultrasonography. The American Academy of Neurology recommends that cranial ultrasonography be done on all preterm neonates less than 30 weeks gestation age between 7 and 14 days of chronologic age and at 36 to 40 weeks gestational age to screen for GMH-IVH. 187 MRI is more accurate than ultrasound and may be used at term as a

Figure 28-3 Coronal section of cerebrum showing germinal matrix - intraventricular hemorrhage. (From Volpe, JJ. Neurology of the newborn , 5 th edition,

Philadelphia, WB Saunders, 2008, p 519 .)

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NEONATAL SEIZURES

Seizures are the most frequent and distinct neurologic signs that occur in the neonatal period. 268 A seizure is clinically defi ned as a paroxysmal alteration in autonomic, behavioral, and motor function. The incidence of neonatal seizures has been reported as ranging from 1.5 to 3.5 per 1000 live births in North America, varying with risk factors such as low birth-weight, prematurity, maternal medical conditions, and perinatal obstetrical complica-tions. 186 Causes of neonatal seizures include hypoxia-ischemia, stroke, metabolic disease, and drug intoxication or withdrawal or idiopathic. Seizures are classifi ed by Volpe as subtle, such as tonic horizontal deviation of eyes in term infants and chewing movements in premature infants, tonic involving sustained posturing of a limb, and clonic involving rhythmic and slow movement. 268 The most frequent overt sign of neonatal neurologic disorders is the convulsive seizure. Electroencephalography (EEG) does not record some of the behaviors/signs previously described as seizures by observation. Neonatal seizures documented by EEG with or without clinical manifestations represent the most accurate diagnosis, although there is controversy regarding the possibility of seizures occurring without EEG activity because they are subcortical. 259,268 Although some experts argue that the diagnosis of neonatal seizures should not be based on clinical observation alone, EEGs are not available in most NICUs. 235

It is imperative to recognize neonatal seizures, determine their origin, and provide specifi c treatment for the illness/condition causing them. It is also important to decrease their interference with feeding and respiration. 259,268 Management of neonatal seizures includes maintenance of the infant ’ s airway and monitoring of vital signs and blood gases. There is not a consensus of when to treat with anticonvulsant drugs and for how long. 109 The most common anticonvulsant used is phenobarbital with others including phenytoin, and ben-zodiazepams. These anticonvulsant drugs have many side effects including respiratory, myocardial, and central nervous system depression, and jaundice, and may have toxic effects on the developing brain. 38

A 2004 Cochrane Review concluded that “ there is little evidence to support the use of any of the anticonvulsants currently used in the neonatal period, ” although it is gener-ally agreed that recurrent or prolonged seizures require treatment to reduce the risk of brain injury. 109,235 Trials of new pharmacologic agents such at bumetanide are currently ongoing. 101 The mortality rate for neonates with seizures has declined from 40% before 1969 to less than 15%. In a recent study, neonatal mortality was 7%, and 28% of infants had poor long-term neurologic outcome such as cerebral palsy, cognitive impairment, and epilepsy. 180 A normal neurologic and behavioral examination and normal to mildly abnormal EEG are associated with a favorable outcome with little or no disability. 180

hydrocephalus, cognitive impairment, sensory and attention problems, and learning disorders varies from 15% in infants with moderate hemorrhage to 35% to 90% in infants with severe hemorrhage. 85

HYPOXIC ISCHEMIC ENCEPHALOPATHY

Hypoxic ischemic encephalopathy (HIE) is a spectrum of neurologic impairment associated with high neonatal mor-tality and neurologic morbidity. 221 HIE is a lack of oxygen and substrate delivery to the brain as a result of decreased blood fl ow which may occur from maternal, uteroplacental, or fetal complications. 163 Examples of potential causes include maternal cardiac arrest, placental abruption, and fetomaternal hemorrhage. The incidence of term gestation perinatal HIE ranges from 0.5 to 2 infants per 1000 live births. 105 MRI is the preferred imaging tool in the neonatal period and long-term follow-up. 164 Clinical signs of moder-ate encephalopathy include lethargy, decreased activity level, hypotonia, weak suck, incomplete Moro refl ex, constricted pupils, bradycardia, and periodic breathing. Clinical signs of severe HIE include stupor or coma, no spontaneous activity, decerebrate posturing, fl accid tone, absent Moro and suck refl exes, dilated or nonreactive pupils, variable heart rate, and apnea. 232 The pattern of HIE occurs in two phases. The fi rst phase is a primary energy failure related to the specifi c insult, which causes the lack of oxygen and glucose. The secondary or delayed brain injury phase energy failure occurs some hours later with symptoms evolving over approximately 72 hours and is postulated to be due to delayed cell death. 266 Delayed cell death is caused by cellular energy failure, acidosis, and neurotoxicity resulting from neurotransmitter (glutamate), calcium, and nitric oxide release and accumulation from the earlier injury phase. 266

Historically the treatment of neonatal HIE has been limited to supportive care, but hypothermia either of the head or whole body is an emerging treatment to inter-rupt several critical steps during the process of hypoxic-ischemic injury. 289 Other neuroprotective interventions being studied include oxygen free radical scavengers and excitatory amino acid antagonists such as allopurinol and glutamate receptor antagonists. 118,264 There is a 10% risk of death with moderate HIE and up to 30% of infants manifest spastic quadriparesis and cognitive impairment resulting from cortical and subcortical injury in a parasagit-tal distribution. 268 In severe HIE mortality is 60% and the majority of all survivors will have long-term morbidity associated with damage to the thalami, basal ganglia, hippocampi, and mesencephalic structures. 232,268 Long-term sequelae include cognitive impairment, spastic quadri-paresis, seizure disorder, ataxia, bulbar and pseudobulbar palsy, atonic quadriparesis, hyperactivity, and impaired attention. 268

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Factors that are predictive of poor outcome include prior enteral feeding, patent ductus arteriosus, indomethacin use, and perforation. Improved medical-surgical care and the use of total parenteral nutrition has reduced the mortality rate from 24% to 65% in the 1960s and 1970s to 9% to 28% in the 1990s, with even lower rates for neonates who did not require surgical intervention. 260 Among survivors, 10% to 30% have strictures, especially of the colon, which require surgery. A Cochrane Review recommended further large clinical trials to determine how the timing of introduction of parenteral feeding affects clinical outcomes in infants with VLBW. 43

GASTROESOPHAGEAL REFLUX DISEASE

Gastroesophageal refl ux disease (GERD) is the retrograde movement of acidic stomach contents into the esophagus. 260 GERD occurs frequently in preterm infants because of the horizontal position and immature lower esophageal sphinc-ter function. 37 Signs of GERD include frequent vomiting, regurgitation of feeds, irritability, and pulmonary aspiration. The premature infant may present with more subtle signs such as apnea and bradycardia. 73,87 GERD is associated with failure to thrive, recurrent apnea, recurrent respiratory infec-tions, and ventilator dependence. 260

Tests for GERD include esophageal pH monitoring, with a tube placed in through a nostril and left in place for 24 hours, and impedance monitoring, which detects the fl ow of fl uids and gas through hollow viscera, or a combination of both techniques. 73 A GERD behavioral scale questionnaire called the Infant Gastroesophageal Refl ux Questionnaire (I-GERQ), which has been shown to be valid and specifi c, 200 has been modifi ed by Birch and Newell for premature infants. 37

Management of GERD includes positioning the infant in prone or on the left side if cardiorespiratory monitoring is applied, using a feed thickener such as carob, pharmacologic agents; monitoring for apnea, parenteral support, and surgery if the previous treatment strategies are not successful and if there are respiratory symptoms associated with GERD. 37,260 Pharmacologic agents include antirefl ux drugs such as ranitidine, lansoprazole, and metoclopramide. 26 The most commonly used surgical procedure for the neonate is a fundal plication in which the proximal stomach is wrapped around the distal esophagus, creating a junction that pre-vents refl ux. 201

RETINOPATHY OF PREMATURITY

Retinopathy of prematurity (ROP) is caused by proliferation of abnormal blood vessels in the newborn retina, which occurs in two phases. Phase I is delayed growth of retinal blood vessels after premature birth. Phase II occurs when the hypoxia created during phase I stimulates growth of new blood vessels. Growth of retinal blood vessels is stimulated

CARDIAC CONDITIONS

Cardiac conditions common to neonates in the NICU include congenital heart defects such as patent ductus arte-riosis (PDA), pulmonary atresia, tetralogy of Fallot (TOF), coarctation of the aorta (COA), and pulmonary atresia. Cardiac conditions are presented in Chapter 26 .

OTHER MEDICAL CONDITIONS

NECROTIZING ENTEROCOLITIS

Necrotizing enterocolitis (NEC) is an acute infl ammatory disease of the bowel that occurs most frequently in prema-ture infants weighing less than 2000 grams during the fi rst 6 weeks of life. 110,170 Although the cause is not known, several factors appear to play a role in the pathogenesis of NEC. Many of these factors involve impaired blood fl ow to the intestine and include asphyxia, congenital heart disease, abdominal wall defects, neural tube defects, intrauterine growth restriction, exchange transfusion, and presence of umbilical catheter. 260 Diminished blood supply results in death of mucosal cells lining the bowel wall, decreasing secretion of lubricating mucus. The thin bowel wall becomes susceptible to proteolytic enzymes, swells, breaks down, and is permeable to exotoxins. Gas-forming bacteria invade the damaged area to produce pneumatosis intestinalis, air in the submucosal, or subserosal surfaces of the bowel. Decreased immunologic factors hamper the ability of the intestinal tract to fi ght organisms that are not absorbed, 44 and intesti-nal motility is not mature until the third trimester. 165 The digestive system of premature infants, especially those who are VLBW and ELBW, often is intolerant to enteral (tube) feedings. Enteral feedings contribute to bacterial coloniza-tion by directly introducing organisms into the intestine as well as providing substrate for organism growth. Bradshaw reported that nearly all infants who had NEC had enteral feedings. 44 Breast milk may have protective effects against the development of NEC.

Signs of obstruction of the bowels include vomiting, dis-tention of the abdomen, increased gastric aspirates, passing of bloody stools, retention of stools, lethargy, decreased urine output, and alterations in respiratory status. Diagnosis of NEC is made by physical examination, laboratory tests, and radiography. Radiographic or abdominal ultrasonogra-phy is used to follow the course of the disease, with lucent bubbles appearing as the gas-forming bacteria enter the intestinal wall. 134 Medical treatment of NEC includes discon-tinuation of all oral feedings, abdominal decompression via nasogastric suction, administration of intravenous antibiot-ics, and correction of fl uid and electrolyte imbalances. 44 Sur-gical intervention is indicated when there is radiographic evidence of fi xed, dilated intestinal loops accompanied by intestinal distention, perforation, intestinal gangrene, and abdominal wall edema.

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(laser photocoagulation, cryotherapy, vitrectomy, and scleral buckling). 251 Implementation of an oxygen management policy that included strict guidelines for increasing and weaning of FiO 2 (fraction of inspired oxygen), monitoring oxygen saturation in the delivery room, in-house transport, and hospitalization for infants with birth weights of 500 to 1500 grams decreased the incidence of stages 3 and 4 ROP and decreased the need for laser treatment. 67 The oxygen level that maintains brain perfusion while minimizing the risk of ROP has not been determined. 20 Surgical outcome varies from complete recovery or mild myopia to blindness, depending on the extent of the disease. Emerging treatment modalities include administration of VEGF, IGF-1, and dietary supplementation with omega-3-polyunsaturated fatty acids. 175

HYPERBILIRUBINEMIA

Hyperbilirubinemia, or physiologic jaundice, is the accumu-lation of excessive amounts of bilirubin in the blood. Biliru-bin is one of the breakdown products of hemoglobin from red blood cells. This condition is seen commonly in prema-ture infants who have immature hepatic function, an increased hemolysis of red blood cells as a result of high concentrations of circulating red blood cells, a shorter life span of red blood cells, and possible polycythemia from birth injuries. The pathogenesis of hyperbilirubinemia may be multifactorial and associated with late preterm gestational age, exclusive breast-feeding, and ABO hemolytic disease (blood incompatibility between mother and fetus), East Asian ethnicity, and jaundice in fi rst 24 hours of life. 273 The primary goal in treatment of hyperbilirubinemia is the pre-vention of kernicterus, which is the deposition of unconju-gated bilirubin in the brain, especially in the basal ganglia, cranial nerve nuclei, anterior horn cells, and hippocampus. Kernicterus can occur in infants with ELBW at low levels of bilirubin; consequently phototherapy is often initiated at low serum bilirubin levels. 13 Phototherapy is administered via a bank of lights or fi beroptic blankets. For phototherapy by lights, the infant is positioned in an open radiant warmer or incubator and the eyes are shielded to avoid retinal damage. Studies show that on/off cycles of more than 1 hour are as effective as continuous treatment. Fiberoptic phototherapy uses light from a halogen lamp transmitted through a fi ber-optic bundle to a blanket that is wrapped around the infant. Infants who received continuous phototherapy for 23 hours with a fi beroptic panel held against their back and kangaroo care (skin-to-skin contact with parent) showed comparable declines in bilirubin levels compared with infants who received phototherapy from a bank of lights in an isolette for 24 hours a day. 171 Using a lower bilirubin level threshold for phototherapy treatment (5 mg per deciliter rather than 8 mg) for infants with ELBW signifi cantly reduced bilirubin levels and rate of neurodevelopmental impairment, but not the death rate. 189

by vascular endothelial growth factor (VEGF) and insulin-like growth factor-1 (IGF-1). 175 Use of oxygen supplementa-tion causes hyperoxia and suppresses VEGF and IGF-1 causing apoptosis (death) of vascular endothelial cells, which causes hyperoxia-induced blood vessel damage and scarring of the retinal vessels. 237 As the preterm infant matures, the metabolically active retina triggers release of VEGF and IGF-1, which leads to new vascular proliferation which causes the progression of retinopathy.

The outcome of ROP varies from normal vision to total loss of vision if there is advanced scarring from the retina to the lens resulting in retinal detachment. 252 ROP was called retrolental fi broplasia in the early 1940s and was virtually eliminated with the severe restriction of oxygen use between 1950 and 1970. The condition has recurred as one of the major causes of disability in preterm infants as a result of the increased survival of infants with VLBW. The incidence of ROP increases with lower gestational age, lower birth weight, and BPD. 175

The classifi cation system for ROP uses a standard descrip-tion of the location of the retinopathy using zones and clock hours, the severity of the disease or stage, and presence of special risk factors. 135 The classifi cation system was revised in 2005 to include a rapid progressive form of ROP. 136 Clas-sifi cation of ROP includes fi ve stages. 251 Stage 1 is character-ized by a visible line of demarcation between the posterior vascularized retina and the anterior avascular retina. Stage 2 is characterized by pathologic neovascularization that is con-fi ned to the retina and appears as a ridge at the vascular/avascular junction. Stage 3 includes new vascularization and migration into the vitreous gel. Stage 4 is characterized by a subtotal retinal detachment. Stage 5 is complete retinal detachment.

Prematurity and low birth weight are the most important factors associated with ROP. IVH, use of supplemental oxygen, sepsis, and blood transfusion are other risk factors. 252 Risk factors for infants with ELBW include birth weight less than 1000 grams, steroid use, maternal preeclampsia, number of days on ventilation, continuous positive pressure ventila-tion, male gender, and fl uctuating PaO 2 .

286 Prevention and treatment include oxygen administration at PaO 2 between 50 and 70 mm Hg and administration of vitamin A, which is still under investigation. 79 Light reduction was not shown to be effective in altering the incidence of ROP. 220

All premature infants given supplemental oxygen are at risk for ROP and should be screened. Guidelines approved by the American Academy of Pediatrics include screening 4 to 6 weeks after birth or within 31 to 33 weeks postconceptual age, whichever is later. Subsequent intervals for examination are based on initial fi ndings. 251 A study conducted in Sweden recommended that the screening criterion be lowered to 31 weeks or less to identify infants with severe ROP. 151

Surgical intervention can be divided into two overlapping objectives: treatment of neovascular process with retinal cryotherapy and surgical intervention for retinal detachment

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matter with disproportionate reduction in the size of the frontal lobes. 193,268

Neurobehavioral effects of FASD include a continuum of long-lasting impairments in cognition and behavior, includ-ing problems in learning, memory, executive functions, hyperactivity, impulsivity, and poor communication and social skills. 117 Prenatal exposure to alcohol also had adverse effects on neuroendocrine functions including increased activity of the hypothalamic-pituitary-adrenal (HPA) axis, which is the putative regulatory mechanism for response to stressful sensory stimuli. 274 A number of ocular and neuro-ophthalmic impairments occur in FASD such as refractive errors, strabismus, and amblyopia, which can lead to lifelong visual impairment if not treated. 51

Maternal and family education and support programs play important roles in prevention of FASD. 149 Once FASD is suspected or diagnosed, evidence-based treatment pro-grams that support the family environment through enhanc-ing parenting skills, facilitating parent-child attachment, and early intervention services may improve children ’ s health and cognitive outcomes. 149 Interventions with the child include psychostimulant pharmacologic agents and cogni-tive control therapy. 216

NEONATAL ABSTINENCE SYNDROME

Maternal use of narcotics during pregnancy leads to the fetus developing dependency on that drug. The most com-monly used drugs that lead to fetal dependence and with-drawal are heroin, cocaine, methadone, and pain medication. There is often maternal use of several drugs during preg-nancy, including alcohol and tobacco, which accompanies socioeconomic factors, poor nutrition, stress, infections, and poor perinatal care. 227 The fetus experiences withdrawal or neonatal abstinence syndrome (NAS) when the mother is withdrawn from her drug or drugs or when the fetus is delivered. 77 The onset of withdrawal symptoms usually occurs within 72 hours after birth. 230 Symptoms of with-drawal include irritability, tremors, seizures, apnea, increased muscle tone, inability to sleep, hyperactive deep tendon refl exes, incoordination, ineffi cient sucking and swallowing, and high-pitched, shrill cry. 267 The diagnosis of NAS is made based on maternal history, maternal and infant toxicology lab tests, and clinical examination of the infant. Measures for evaluation and treatment of neonatal abstinence include the Neonatal Intensive Care Unit Network Neurobehavioral Scale (NNNS), which was designed to provide a comprehen-sive assessment of both neurologic integrity and behavioral functions, 161 and the Neonatal Drug Withdrawal Scoring System, also known as the Lipsitz tool, which scores tremors, irritability, refl exes, stools, muscle tone, skin abrasions, tachypnea, repetitive sneezing, yawning, vomiting, and fever. 28 Infants with withdrawal symptoms should receive supportive care including swaddling, non-nutritive sucking, and decreased sensory stimulation. Small frequent feedings

If phototherapy is not effective in reducing the total serum bilirubin concentrations to acceptable levels, or if there is a rapidly rising bilirubin level, exchange transfusion is done. 84 In this technique, approximately 85% of the infant ’ s red blood cells are replaced. Care must be taken so as not to disrupt cerebral blood fl ow and intracranial pressure. Recent case studies and clinical trials from the 1980s and 1990s demonstrated the benefi cial effects of metallopor-phyrins such as tin (Sn) mesoporphyrin and tin protopor-phyrin for both prophylaxis and treatment to reduce hyperbilirubinemia. 83 These substances are inhibitors of heme oxygenase, the enzyme in the synthesis of bilirubin that limits the rate of degradation of heme to bile. Infants with severe hyperbilirubinemia who are not responsive to phototherapy and whose parents are Jehovah ’ s Witnesses and rejected exchange transfusion have been successfully treated with Sn-mesoporphyrin. 140

FETAL ALCOHOL SYNDROME

Chronic alcohol exposure in utero may result in a multitude of symptoms at birth, including withdrawal symptoms of irritability, tremors, apnea, hypertonia, hypersensitivity to sensory stimuli, and seizures. 268 Alcohol rapidly crosses the placenta and the blood-brain barrier of the fetus, and there is a dose-dependent relationship between maternal alcohol intake in the fi rst trimester of pregnancy and the occurrence of fetal alcohol syndrome (FAS). FAS is the most recognized outcome of prenatal alcohol exposure and is characterized by pre- and postnatal growth retardation, craniofacial anomalies, as well as CNS dysfunction such as intellectual disabilities and behavior problems. 117 It is now recognized that the effects of prenatal exposure to alcohol make up a continuum of physical anomalies and cognitive and behavioral defi cits. The term “ fetal alcohol spectrum disorder ” (FASD) has been described as a nondi-agnostic umbrella term that describes the range of effects including FAS. 117

Alcohol exposure in utero is associated with a broad range of adverse effects on placental development and function. 51 Symptoms of withdrawal manifest within the fi rst 24 hours after birth. The clinical withdrawal syndrome dissipates within a week, and the treatment includes avoidance of sensory overload and administration of phenobarbital for seizures.

FAS is one of the most common causes of intellectual disability in the world, and it is characterized by a triad of symptoms composed of growth defi ciency, cardiac defects, and CNS disturbances, such as microcephaly and dysmor-phology (including facial, genital, and joint abnormali-ties). 268 Neuroimaging studies have demonstrated overall and regional volumetric and surface area reductions; abnor-malities of particular areas of the brain including the basal ganglia, corpus callosum, cerebellum, and hippocampus; and reduced and increased densities for white and gray

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such as limb withdrawal, thrashing, rigidity, fl accidity, fi st clenching, fi nger splaying, and limb extension; and changes in behavioral state. 115 Pain may lead to poor nutritional intake, delayed wound healing, impaired mobility, sleep dis-turbances, withdrawal, irritability, and other developmental regression. 270

There are 40 methods to assess pain in infants. 217 Recom-mended pain measures include the Neonatal Facial Coding System, 116 the Neonatal Infant Pain Scale, 157 the CRIES, 148 and the Premature Infant Pain Profi le. 246 These measures include biologic items, behavioral items, or both. The Bernese Pain Scale for Neonates was specifi cally developed for preterm neonates who require ventilation. 69 Recent studies indicate that extremity movements such as extremity fl exion, extension, fi nger splay, hand on face, fi sting, and frown are associated with pain, especially at early gestational age and may increase the accuracy of examination of pain. 132 New avenues for assessment of neonatal pain include the use of noninvasive EEG, neuroimaging, and near infra-red spectroscopy to attempt to measure perception of pain. 217

Nonpharmacologic methods to alleviate pain include decreasing the number of noxious stimuli, decreasing stimu-lation, swaddling, non-nutritive sucking, tactile comfort measures, rocking, containment, and music. 270 Preterm neo-nates demonstrated a lower mean heart rate, shorter crying time, and shorter mean sleep disruption after heel stick with facilitated tucking (containing the infant with hands softly holding the infant ’ s extremities in soft fl exion) than without. 72,272 Administration of breast milk, sucrose solution, and non-nutritive sucking may help decrease the pain response in newborn infants. 159,231 Sensorial saturation, which includes subtle tactile, vestibular, gustative, olfactory, auditory, and visual stimuli, was found to be effective in decreasing pain responses of premature infants receiving heel sticks. 31

Morphine, fentanyl, and topical mixture of a local anes-thetic cream such as a eutectic mixture of lidocaine and prilocaine (EMLA) are the most common analgesics admin-istered to neonates. 19,246 Other pharmacologic agents under investigation include methadone and ketamine. 19,35

FAMILY RESPONSE TO THE NEONATAL SPECIAL CARE NURSERY

Premature birth, followed by the intensity of the experience of the NICU, is highly stressful and sometimes traumatic not only for the baby but also for the parents and the whole family. The NICU experience for parents may vary depend-ing on the severity of the infant ’ s illness and the level of preparedness parents have prior to the infant ’ s admission to the NICU. 196,265 Although prior knowledge of a possible premature or complicated birth may soften the intensity of the experience at fi rst, all parents of premature infants are particularly vulnerable throughout their infant ’ s neonatal period. The foremost concern is for survival. Once survival

and additional calories may be needed. If necessary, medica-tions such as tincture of opium, morphine, methadone, and buprenorphine are used. 139,267

PAIN

Pain is defi ned as an unpleasant sensory and emotional expe-rience associated with actual or potential tissue damage and is best described by self-report. 119 Obviously the neonate cannot report on pain but may express pain through specifi c pain behaviors, physiologic changes, changes in cerebral blood fl ow, and cellular and molecular changes in pain pro-cessing pathways. Adverse sequelae may “ include death, poor neurologic outcomes, abnormal somatization and response to pain later in life. ” 119 The peripheral nervous system is capable of responding to stimuli by 20 weeks postconcep-tion. Both the number and types of peripheral receptors are similar to those of adults by 20 to 24 weeks of gestation with a resulting increased density of receptors in the newborn as compared with adult. Spinal cord and brain stem tracts are not fully myelinated, therefore, central nerve conduction is slow. There is evidence that pain pathways, cortical and sub-cortical centers of pain perception, and neurochemical systems associated with pain transmission are functional in premature neonates of 20 to 24 weeks gestational age. 98 Most nociceptive impulses are transmitted by nonmyelinated C fi bers but also by A delta and A beta fi bers, which transmit light touch and proprioception in adults. 119 However, the pain modulatory tracts, which can inhibit pain through release of inhibitory neurotransmitters such as serotonin, dopamine, and norepinephrine, are not developed until 36 to 40 weeks of gestation. As a consequence, the preterm infant is more sensitive to pain than term or older infants. 119,246 Painful stimuli resulting from medical conditions and medical procedures (such as heel sticks, intubation, ventila-tion, ocular exam, and IV placement) can lead to prolonged structural and functional alterations in pain pathways that may persist into adult life. 36,99 The infant also may associate touch with painful input, which can interfere with bonding and attachment.

Although it is diffi cult to assess pain in the neonate, the physical therapist working in the NICU should be aware of methods of examination and nonpharmacologic interven-tion to alleviate pain. Both physiologic and behavioral responses of the neonate to nociceptive or painful stimuli have been identifi ed. Physiologic manifestations of pain include increased heart rate, heart rate variability, blood pressure, and respirations, with evidence of decreased oxy-genation. Skin color and character include pallor or fl ushing, diaphoresis, and palmar sweating. Other indicators of pain are increased muscle tone, dilated pupils, and laboratory evidence of metabolic or endocrine changes. 217 Neonatal behavioral responses to nociceptive input include sustained and intense crying; facial expression of grimaces, furrowed brow, quivering chin, or eyes tightly closed; motor behavior

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pists, with their unique skills in infant behavioral observa-tion and developmental intervention, play an important role in the support offered parents during this diffi cult time. The physical therapist can help the parents read their baby ’ s cues and provide feedback on their baby ’ s responses. Several studies have reported long-term effects ranging from 9 months to 2 years of behaviorally based interventions on infant development, parent-infant interaction, maternal confi dence and self-esteem, and paternal attitudes toward and involvement in caregiving. 80,106,206,218 Primarily derived from the Neonatal Behavioral Assessment Scale (NBAS), behaviorally based intervention tools that have been devel-oped to promote parent and child outcomes are summarized in Table 28-1 .

FRAMEWORK FOR PHYSICAL THERAPY The primary role of the physical therapist in the NICU is to promote the neonate ’ s movement; postural control; and adaptation to extrauterine life through collaboration with caregivers of infants identifi ed with, or at risk for, a developmental delay or disability and provision of develop-mental interventions. Another important role is to support parental adaptation to the experience of having a sick child in the NICU and facilitate their participation in the infant ’ s care. Updated clinical practice guidelines for physical thera-pists working in the NICU have recently been published in a two-part article series. 256,257 Part 1 articulates the path to professional competence and describes the clinical compe-tencies for physical therapists, NICU clinical training models, and a clinical decision-making algorithm. 256 Part 2 presents the evidence-based practice guidelines and recommenda-tions and theoretic frameworks that support neonatal physi-cal therapy practice. 257 Three theoretic frameworks for serving infants in the NICU are the enablement model, family-centered care, and infant neurobehavioral function-ing. Those theoretic frameworks address the three main components of physical therapy intervention: communica-tion and coordination, information sharing with parents, and procedural interventions (for more details, refer to Chapters 1 and 29 ).

INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY, AND HEALTH

The International Classifi cation of Functioning, Disability and Health, commonly referred to as the ICF, is a framework for understanding relationships between health and disabil-ity at both individual and population levels (see Figure 1-4 ). 283 The ICF was developed to create a common language to improve communication among health care providers, researchers, policy makers, and people with disabilities and to provide a scientifi c basis for understanding and studying health and health-related states, outcomes, and determi-nants. 202 The health-related domains are classifi ed from body,

is certain, concern shifts to the quality of the infant ’ s devel-opmental outcome. The parents themselves can be consid-ered to be “ premature parents ” and may be mourning the loss of the “ imagined ” or “ wished for baby ” as they struggle to develop a bond with their “ real baby. ” 50,147 Parents report that the NICU experience often leaves them with a tempo-rary loss of their parental role and identity and at time of discharge may feel overwhelmed, worried, and even pan-icked, especially if their infant had required ventilation while in the NICU. 219 The phase immediately after discharge from the hospital is often one of anxious adjustment during which mothers express their lack of confi dence and insecurity in caring for their preterm infant. 184

The length of stay for infants admitted to the NICU varies widely according to the severity of the condition leading to the admission. Some infants may spend as little as one day in the NICU (respiratory distress); others may spend months (e.g., extreme prematurity, short gut). Research on parental response to having their newborn admitted to the NICU has been fairly consistent in reporting a high level of parental stress and anxiety, which may lead to a post-traumatic stress reaction (PTSR). PTSR is a predictor of infant sleep and eating problems at 18 months. 214 The preva-lence of postpartum depression (PPD) in mothers of new-borns admitted to the NICU (45%) is higher compared to PPD in fi rst-time mothers of healthy infants (8% to 15%). 29 On a more positive note, a recent study reported that the implementation of the “ parent-friendly ” changes as seen in most hospitals across the United States contributed to helping parents make a more successful adaptation to having an infant in the NICU. 65

Admission of the newborn to the NICU happens at a critical time in the development of the family unit. For the infant, biobehavioral transition from intrauterine to extrauterine life occurs in the fi rst months of life. 196 For the parents, the fi rst months are a time when they search for “ the goodness of fi t ” between themselves and their new baby. 261 The core challenge for parents is to engage with their baby in a way that is unique to them and fosters the baby ’ s development. 245 Many factors may render the rela-tionship between parents and their premature infant vulner-able. Premature infants have poor abilities to self-regulate physiologic rhythms and attention is limited, which can disrupt the parent-infant synchrony so critical during inter-active episodes. 95 Preterm infants are more irritable, smile less, and have facial signals that are less clear than full-term infants, 242 which affect the parents ’ ability to read and respond to their infant ’ s cues. 95 Steinberg contended that posttraumatic stress reaction and depression interfere with the parents ’ ability to read their baby ’ s cues and respond sensitively to the baby ’ s needs. 244 Nevertheless, a number of studies have demonstrated that during this diffi cult hospital time, helping parents understand their baby ’ s behavior appears to be critical in helping them maintain their role as parents and mitigate levels of stress. 155,169,219 Physical thera-

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of gestation) and smaller in birth weight (as little as 450 grams), there has been a growing concern among health care professionals not only to assure their survival but to optimize their developmental course and outcome. Better known as developmental care, the intervention model designed to address these issues focuses on the detailed observation of infant neurobehavioral functioning to design highly individualized plans of care and provide developmen-tally appropriate experiential opportunities for the newborn in the hospital setting and the provision of supportive care for the infant ’ s family. 9 Recent research suggests that indi-vidualized developmental care may improve some medical complications and short-term outcomes such as length of stay, level of alertness, and feeding progression. 179,210

Als ’ s synactive theory provides a theoretic framework for the neurobehavioral functioning of the young infant. 2 Infant neurobehavioral functioning is understood as the unfolding of sequential achievements in four interdependent behavioral dimensions organized as subsystems. 2 The infant (1) stabilizes her autonomic or physiologic behavior, (2) regulates or controls her motor behavior, (3) organizes her behavioral states and her responsiveness through inter-action with her social and physical environment, and (4) orients to animate and inanimate objects. Through mat-uration and experience, the infant is able to organize her behavior subsystems and actively participate in her social world including interactions with caregivers to meet her needs. 2,46 Competency in behavioral organization can be determined through the careful observation of the behaviors displayed by the infant within each of the behavioral dimen-sions. Als has categorized behaviors within each of the behavioral dimensions as either “ approach/regulatory ” or “ avoidance/stress. ” 2 Regulatory behaviors indicate a state of

individual, and societal perspectives by means of two lists: a list of body functions and structures and a list of domains of activity and participation. Because an individual ’ s function-ing and disability occurs in a context, the ICF also includes a list of environmental and personal factors (for more infor-mation, see www.who.int/classifi cations/icf/en ).

High-risk neonates frequently demonstrate impairments in muscle tone, range of motion, sensory organization, and postural reactions. These impairments in body functions and structures may contribute to limitations in activity such as diffi culty in breathing, feeding, visual and auditory respon-siveness, and motor activities such as head control and movement of hands to mouth. The interaction between impairments and activity limitations may contribute to restrictions in parent-infant interaction ( participation ). The ICF model also considers personal and environmental factors as relevant infl uences on body functions and struc-tures, activity, and participation. Personal factors include an infant ’ s health complications and temperament. Environ-mental factors range from levels of lighting and noise in the special care nursery to family and community support such as maternity leave that will directly infl uence the infant ’ s outcome and well-being (see Table 28-2 for an example of the ICF model adapted for the infant in the neonatal inten-sive care unit).

INFANT NEUROBEHAVIORAL FUNCTIONING Since the late 1980s, advances in perinatal and newborn intensive care have dramatically decreased the mortality rates of preterm and sick newborns at high risk for devel-opmental problems. As premature infants have become younger in gestational age at birth (as young as 23 weeks

TABLE 28-1 Behaviorally Based Assessments Used to Promote Parent and Child Outcomes

Assessment Description

Newborn Behavioral Observation system (NBO) 196

The NBO is an individualized, infant-focused, family-centered observational system that is designed for use by practitioners to elicit and describe the infant ’ s competencies and individuality. Its explicit goals are to strengthen the relationship between the parent and the child and promote the development of a supportive relationship between the clinician and the family.

Mother ’ s Assessment of the Behavior of the Infant (MABI; Field et al., 1978)

The MABI is an abbreviated version of the Neonatal Behavioral Assessment Scale (NBAS) designed to be administered by parents to their own infant. The 15 items are based on the NBAS items, omitting all refl ex testing. The items are grouped into four dimensions (social, motor, state organization, and state regulation) and are scored on a 4-point scale.

Combined Physical and Behavioral Neonatal Examination (CPBNE; Keefer, 1995)

The CPBNE incorporates behavioral items from the NBAS into the routine neonatal physical examination. It allows the practitioner to assess the infant ’ s behaviors and to generate an individual behavioral profi le.

Family-Administered Neonatal Activities (FANA; Cardone & Gilkerson, 1990; 1995 NBAS manual)

The FANA is designed to elicit from parents their initial perceptions of their newborn and then to use the behavior of the baby as the vehicle through which parents can affi rm or challenge their initial perceptions. The FANA integrates the practices of short-term, focused, psychodynamic interviewing with a family-empowerment approach.

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children with special health care needs and their families. The American Academy of Pediatrics (AAP) recognizes the importance of FCC as an approach to health care 192 and stresses the importance of the role that families play in patient outcomes. 174 At the heart of family-centered care is the recognition that the family is the constant in a child ’ s life. For this reason, family-centered care is built on partnerships between families and professionals. The Institute for Family-Centered Care has identifi ed eight core concepts of FCC that guide the delivery of services to families with children with health care needs: (1) respect, (2) choice, (3) information, (4) collaboration, (5) strengths, (6) support, (7) empower-ment, and (8) fl exibility ( www.familycenteredcare.org ). Many medical institutions and NICUs across the country have instituted their own FCC guidelines and practices, but for the most part they all share the pursuit of being respon-sive to the priorities and choices of families. Cleveland pub-lished a systematic review of the literature to identify the needs of parents in the NICU and the type of nursing support most helpful during their stay in the NICU ( Table 28-3 ). 70 Parents need accurate information, to have contact with their infant, and to be fully included in their infant ’ s care. Individualized care and knowing that the NICU staff is watching over and protecting their infant is also important to parents. The types of behaviors that best support parents in the NICU are those where they feel welcome at all times,

well-being and are observed when an infant ’ s self-regulatory abilities are able to support the social and environmental demands placed on her; she is then described as organized . 76 Stress behaviors indicate a state of exhaustion and are observed when the infant ’ s threshold for self-regulation is exceeded by the demands placed on her; she is then described as disorganized . 76

The application of neurobehavioral observations to clinical practice has been formalized with the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). 3,4 The NIDCAP proposes a structured method of weekly observation and assessment of infant behavior by a developmental specialist or NIDCAP certifi ed physical therapist. Based on these observations and following consul-tations with the infant ’ s family and medical team, an indi-vidualized care plan is developed and implemented. Within this perspective, intervention is aimed at facilitating pro-longed periods of organization by reinforcing the infant ’ s individual self-regulatory style while supporting families to nurture and care for their infant. 7,9,42

FAMILY-CENTERED CARE

Family-centered care (FCC) was fi rst defi ned in 1987 as part of former surgeon general Everett Koop ’ s initiative for family-centered, community-based, coordinated care for

TABLE 28-2 Application of the International Classifi cation of Functioning, Disability, and Health for Infants in the Neonatal Intensive Care Unit

Health Condition (Includes Disease or injury)

Examples: prematurity, respiratory distress, intraventricular hemorrhage, periventricular leukomalacia, arthrogryposis, spina bifi da, failure to thrive, short gut, Down syndrome

Body Functions and Structures Activities Participation

Physiologic and Psychologic Functions of Body Systems Execution of a Task or Action by an Individual Individual ’ s Involvement in NICU Life Situations

Examples: muscle tone, postural reactions, range of motion, sensory organization, behavioral state control, neurobehavioral functioning, physiologic stability ↓

Examples: breathing, sucking, crying, head control, hand to mouth, kicking, grasping, visual and auditory responsiveness ↓

Examples: parent-infant interaction, communication, being held by parents, feeding, sleeping, growing ↓

Impairments Activity Limitations Participation Restrictions

Examples: skeletal deformity, fl uctuating tone, startles, deafness, decreased range of motion, behavioral disorganization

Examples: cannot breathe on own, tube fed, cannot locate sound

Examples: cannot be held by parents because of the inability to maintain physiologic stability and neurobehavioral organization

Environmental Factors Personal Factors

Physical, Social, and Attitudinal Features of the Family and NICU Setting Personal Characteristics of the Individual

Examples: lighting and noise levels, maternity leave, family support, family ’ s distance to travel to hospital, siblings

Examples: medical complications, temperament, sensitivity, preferences

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with bonding, facilitate developmentally supportive posi-tioning and handling, and allow for continuous carry-over of therapeutic strategies. Lastly, the physical therapist is part of an interdisciplinary team of health care providers. Consistent with the Guide to Physical Therapist Practice, 18 effective communication and collaboration with profession-als from all disciplines and accurate documentation are critical. The next section utilizes a neurobehavioral frame-work to describe the examination of the high-risk infant with examples of considerations for specifi c diagnoses.

BEHAVIORAL STATE States of consciousness were originally proposed by Wolff and have been expanded to include six behavioral states: (1) deep sleep, (2) light sleep, (3) drowsy, (4) quiet awake, (5) active awake, and (6) crying. 282 Als has expanded this paradigm to include 12 states to distinguish between the adaptive and maladaptive self-regulation strategies of fragile infants compared to full-term infants. 3 Increasing gesta-tional age is associated with demonstration of more robust state organization. That is, as infants mature, they are able to transition smoothly and predictably between states. For example, an infant who is 25 weeks corrected gestational age (CGA) will likely spend most of the day in a light sleep state and will have brief periods of quiet awake. Com-paratively, an infant who is 40 weeks CGA should have longer periods of quiet awake time, particularly before

are encouraged to participate in their child ’ s care, and are engaged in a therapeutic relationship with the nursing staff. Parent-to-parent groups provide families with additional emotional support. 70 The physical therapist in the NICU can consider those recommendations in the implementation of family-centered physical therapy interventions in the neona-tal intensive care unit.

DEVELOPMENTAL EXAMINATION AND EVALUATION

The purposes of the neonatal physical therapy examination and evaluation are to identify (1) impairments in body function and structure that contribute to activity limitations and participation restrictions, (2) the developmental status of the child, (3) individualized responses to stress and self-regulation, (4) needs for skilled positioning and han-dling, and (5) environmental adaptations to optimize growth and development. The examination and evaluation of infants in the NICU must support the goals of physical therapy intervention aimed at facilitating the infant ’ s participation in age-appropriate developmental activities (e.g., feeding, tucking, self-soothing, social interaction with caregivers) and interactions with the family (e.g., relationship-building, attachment).

The examination and evaluation of high-risk infants are best conducted using a combination of observation and handling techniques that ideally occur over the course of several sessions. Infants hospitalized in the NICU will often not tolerate a full standardized developmental exami-nation. Rather, the physical therapist often formulates a neu-robehavioral profi le based on observation of the infant ’ s behaviors. That is, the physical therapist describes the infant ’ s successes and diffi culties in achieving and maintaining self-regulation and identifi es the strategies that best support the needs and developmental level of the infant ( Box 28-2 ). 42

As handling of medically fragile infants can impose physi-ologic stress, physical therapy procedures must be appropri-ately timed and modulated to match the neurobehavioral competencies of the infant. Under the guidance of family-centered practice, any examination or intervention with an infant should be in partnership with families to assist

Box 28-2 Recommendations for Physical Therapist Examination and Evaluation of Infants in the NICU

1. Protect the infant ’ s fragile neurobehavioral system, particularly for infants who may not tolerate handling or a standardized evaluation.

2. Repeat observations over time. 3. Partner with parents and members of the NICU team. 4. Observe, interpret, and communicate infant behaviors to

parents and members of the NICU team.

TABLE 28-3 Needs of Parents Who Have Infants in the NICU and the Types of Support That Are Most Helpful 70

Needs of Parents Behaviors That Support Parents

1. Accurate information 2. Contact with the infant 3. Inclusion in the infant ’ s care 4. Vigilant watching-over and protecting the infant 5. Being positively perceived by the nursery staff 6. Individualized care 7. A therapeutic relationship with the nursing staff

• Emotional support • Parent empowerment • A welcoming environment with supportive unit policies • Parent education with an opportunity to practice new skills through guided participation

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the motor system of a fragile infant. Examination should include observation of the infant ’ s posture at rest and active fl exion movements during quiet awake periods, routine care, social interaction, and feeding. Functional movements should be interpreted according to the progression of active fl exion patterns that emerge with increasing gestational age. Typically these occur at 32 weeks for lower extremities, 35 weeks for upper extremities, and 37 to 39 weeks for head and trunk. 265 Thus, the immature neuromotor system of the preterm infant often precludes independent antigravity fl exion movements and predisposes the infant to compensa-tions, including retracted scapulae, externally rotated and abducted lower extremities, and extension and rotation pos-tures of the cervical spine and trunk. 255 As contemporary frameworks such as those described in the previous section guide practice, less emphasis is placed on testing a battery of infant refl exes. Rather, the physical therapist examination evaluates refl exes deemed more “ functional ” (e.g., suck, swallow, palmar and plantar grasp, and early righting responses). 56

Infants with intraventricular hemorrhage (IVH) are at risk for neuromotor impairments that range from mild to severe. 128,177 When examining an infant with IVH, the thera-pist should note asymmetries in postural muscles and active movements of the extremities, including absence of isolated distal or rotational movements. Clonus should be tested in both ankles. Changes in muscle tone at rest and during active movement should be observed and noted. The emergence of fl exor tone and antigravity movements should be evaluated when the infant is awake and alert, as behavioral state infl u-ences motor system activity and hence infant motor control.

SOCIAL INTERACTION Infants enter this world predisposed to socialize. Many healthy, full-term infants can visually track faces or brightly colored objects and alert to familiar voices. 196 Many preterm or medically fragile infants can complete these tasks with some modifi cations. 3,40 A developmental examination may include presenting visual and auditory stimulation to an infant. Physical therapists should judiciously offer opportu-nities for the infant to socially interact, as these complex tasks can be distressful and overwhelm the infant ’ s capacity for self-regulation. The physical therapist plays a critical role in facilitating social interaction between infants and caregiv-ers by modeling developmentally supportive interactions, modifying the environment as needed, and providing parents with anticipatory guidance about the progression of their infant ’ s social interaction skills.

TESTS AND MEASURES Tests and measures provide (1) objective documentation of infant functioning over time, (2) justifi cation for develop-mental interventions in the NICU, (3) documentation of

and following feedings. An infant ’ s ability to achieve and maintain sleep and awake states will be compromised by her medical and neurodevelopmental status. The physical thera-pist plays a key role in educating parents and staff to identify state transitions and optimize the environment (e.g., modi-fi cations to light, sound, and interaction) to facilitate smooth transitions to and from sleep.

Infants with neonatal abstinence syndrome (NAS) dem-onstrate diffi culty with state organization. 226 Examination of the infant with NAS requires careful observation of state transitions. The therapist should observe how readily the infant moves from one state to the next, the duration of each state, and her self-soothing strategies. Before the examina-tion, the infant ’ s care team should be consulted to determine how NAS symptoms are being assessed (e.g., a standardized scoring method) and managed medically.

AUTONOMIC NERVOUS SYSTEM During the examination of the autonomic system, the physi-cal therapist obtains the infant ’ s heart and respiratory rate from the cardiorespiratory monitor. In the neonate, heart rates range from 120 to 180 beats per minute, and respiratory rate ranges from 40 to 60 breaths per minute. 168 In addition, respiratory effort and digestive function during rest, routine care, handling, and social interaction should be noted. Irreg-ular respirations or paling around the mouth, eyes, and nose; spitting up; straining; bowel movements; and hiccoughs indicate instability or diffi culty in achieving self-regulation. Smooth respirations; even color; and minimal startles, tremors, and digestive instability indicate that the demands of the situation have not exceeded the infant ’ s capacity for self-regulation.

Infants with chronic lung disease (CLD) have limited endurance for functional activities. Changes in respiratory effort during the examination should be carefully observed. Costal retractions, head bobbing, and nasal fl aring are evi-dence of increased work of breathing, and their presence, timing, and resolution should be carefully noted. 205 Collabo-ration with nursing and respiratory therapy staff to facilitate the developmental examination is necessary in order to coin-cide with optimal timing of diuretic therapy, how modifi ca-tion to oxygen therapy will be managed including the upper and lower parameters of oxygen, and whether the mode of oxygen therapy can be modifi ed for the examination to allow for greater bedside mobility. The examination of the infant with CLD requires frequent breaks, appropriate pacing of activity, and modifi cation of the environment (e.g., lighting, sound, and social interaction) to allow the infant to utilize strategies for self-regulation.

MOTOR SYSTEM Physical therapists are perhaps the most highly qualifi ed members of the health care team to examine and interpret

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varies widely between NICU physical therapists but the TIMP, designed by and for physical therapists working with infants as young as 32 weeks of gestation, has become the most widely used assessment of infant functional motor behavior in the NICU. 57 The Dubowitz, used to establish the gestational age of the infant at birth, provides physical thera-pists with an excellent opportunity to learn about neurologic maturity of infants in the weeks before term age. 89 The Newborn Behavioral Observation (NBO) is a relationship-building tool that supports the efforts of the physical thera-pist to establish a rapport with families and share with them

the effectiveness of those interventions, and (4) identifi ca-tion of infants in need of developmental follow-up and intervention after discharge from the NICU. Most useful to the physical therapist are tests and measures of neurologic function, neurobehavioral functioning, motor behavior, and oral-motor function. Table 28-4 provides a list of tests and measures commonly used by physical therapists in the NICU. Certifi cation on many of these tools requires extensive train-ing (e.g., NBAS, APIB, NIDCAP, and TIMP) and will greatly enhance the clinical skills of physical therapists working with this medically complex population. The use of these tools

TABLE 28-4 Tests and Measures Used to Assess Infants in the Neonatal Intensive Care Unit

Name Description

Neurological Assessment of the Preterm and Full-Term Newborn Infant (Dubowitz & Dubowitz, 1981)

Purpose: To determine gestational age Divided into six sections examining posture and tone, tone patterns, refl exes, movements, abnormal signs/patterns, orientation and behavior.

Neonatal Behavioral Assessment Scale (NBAS; Brazelton & Nugent, 1995)

Purpose: To assess neurobehavioral functioning Composed of 28 behavioral items, each scored on a 9-point scale, and 18 refl ex items, each scored on a 4-point scale. Also includes a set of seven supplementary items designed to summarize the quality of the infant ’ s responsiveness and the amount of examination facilitation needed to support the infant during the assessment.

Newborn Behavioral Observation System (NBO; Nugent et al., 2007)

Purpose: relationship-building tool with parents. Composed of 18 neurobehavioral items designed to help practitioners sensitize parents to their child ’ s competencies and uniqueness, support the development of a positive and nurturing parent-infant relationship, and foster the development of the practitioner-parent relationship.

Newborn Individualized Developmental Care and Assessment Program (NIDCAP; Als, 1986)

Purpose: To identify individualized developmental care strategies Composed of a neurobehavior checklist marked every 2 minutes before, during, and after a caregiving event. A narrative is written that describes the caregiving event from the infant ’ s perspective and offers suggestions for caregiving modifi cation that best support the infant ’ s current level of self-regulatory abilities.

Assessment of Preterm Infant Behavior (APIB; Als et al., 1982a)

Purpose: To assess neurobehavioral functioning of the high-risk infant Composed of behavioral items and refl ex items, the APIB provides a valuable resource in support of developmental care (NIDCAP). It is also used as a neurodevelopmental diagnostic instrument for clinicians and developmental consultants in the nursery setting.

NICU Network Neurobehavioral Scale (NNNS; Lester & Tronick, 2004)

Purpose: To assess neurobehavioral functioning of drug-exposed and high-risk infants Composed of 115 items, 45 of which require manipulation of the infant, whereas 70 are observed. Divided into three parts: Examination Scale, Examiner Ratings Scale, and Stress/Abstinence Scale.

Test of Infant Motor Performance (TIMP; Campbell et al., 2001)

Purpose: To assess infant functional motor behavior Composed of 13 items on the Observed Scale, each scored on a dichotomous scale, and 29 items on the Elicited Scale, each scored on a 5-, 6-, or 7- point hierarchic scale.

Neonatal Oral-Motor Assessment Scale (NOMAS; Braun & Palmer, 1985)

Purpose: To measure components of nutritive and non-nutritive sucking Composed of variables such as rate, rhythmicity, jaw excursion, tongue confi guration, and movement.

Nursing Child Assessment Feeding Scale (NCAFS; Barnard & Eyres, 1979)

Purpose: To assess parent-infant feeding interaction Observational tool assessing parental responsiveness to infant ’ s cues and signs of distress and social interaction during feeding.

Early Feeding Skills Assessment (EFS; Thoyre, Shaker & Pridham, 2005)

Purpose: To assess infant readiness and tolerance for feeding. Used to create a profi le of an infant ’ s feeding skills in relation to predetermined oral feeding competencies.

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scale. The refl ex items can be used to identify gross neu-rologic abnormalities but are not intended to provide a neurologic diagnosis. The NBAS also includes a set of seven supplementary items designed to summarize the quality of the infant ’ s responsiveness and the amount of examination facilitation needed to support the infant during the assessment. These supplementary items were originally included to better capture the quality of behaviors seen in high-risk infants. Therefore, the NBAS is well suited for use with the high-risk population. The NBAS is appro-priate for use with term infants and stable high-risk infants near term age until the end of the second month of life postterm.

The NBAS has been used extensively in research to study and document the effects of prematurity; intrauterine growth retardation; and prenatal exposure to cocaine, alcohol, caffeine and tobacco on newborn behavior. 197 The NBAS has also inspired others to develop scales for use with diverse populations. Examples include the Assessment of Preterm Infant Behavior for use with premature infants 5 and the NICU Network Neurobehavioral Scale for use with drug-exposed infants, 162 both described in this section. The NBAS ’ s central focus on the facilitation of infant competence by a trained and sensitive examiner has also brought to light its powerful qualities as an intervention tool for use with a wide range of families. This subsequently led to the development of a number of NBAS-based relationship-building tools such as the Mother ’ s Assessment of the Behavior of the Infant (MABI), 277 the Combined Physical Exam and Behavioral Exam (PEBE), 141 the Family Administered Neonatal Activi-ties (FANA), 63 and most recently the Newborn Behavioral Observation system described in this section (NBO). 196 More information on the NBAS is available at www.brazelton-institute.com .

NEWBORN BEHAVIORAL OBSERVATION SYSTEM

The Newborn Behavioral Observation system (NBO) is a relationship-building tool designed to help practitioners sensitize parents to their child ’ s competencies and unique-ness, support the development of a positive and nurturing parent-infant relationship, and foster the development of the practitioner-parent relationship. 196 The NBO consists of 18 neurobehavioral items used to elicit infant competen-cies and make observations of newborn behavior, such as sleep behavior, the baby ’ s interactive capacities and thresh-old for stimulation, motor capacities, crying and consolabil-ity, and state regulation. 195 As it is conceptualized as an interactive behavioral observation, the NBO is always admin-istered in the presence of the family so that it can provide a forum for parents and the practitioner to observe and interpret the newborn ’ s behavior. The NBO takes about 45 minutes or longer to administer and can be completed from the fi rst day of life up to the end of the second month of life postterm. The NBO is designed to be fl exible and

developmental information about their infant in a positive context. 196 Some of these tests require signifi cant time in administration, scoring, and interpretation (NIDCAP, NBAS, APIB); whereas the time required to complete these tests decreases with practice, the physical therapist needs to evaluate the importance of the information gathered and the category of infants most likely to benefi t from those tests. A team approach and sharing of information between professionals (e.g., NIDCAP) may help in addressing some of the time and cost issues associated with those tests.

The administration of tests to fragile and medically complex infants in the NICU requires clinical judgment and constant monitoring of physiologic stability to deter-mine whether the administration of the test is well tolerated by the infant. Many infants will not have the physiologic stability required to withstand the stress caused by the handling imposed during the administration of the test (e.g., APIB, TIMP). For infants without suffi cient physio-logic stability, testing will have to be either postponed or done in multiple brief testing periods in order to gather the necessary information. The following includes a detailed description of tests and measures commonly used by physi-cal therapists in the NICU.

NEUROLOGICAL ASSESSMENT OF THE PRETERM AND FULL-TERM NEWBORN INFANT

The Neurological Assessment of the Preterm and Full-Term Newborn Infant, commonly known as the Dubowitz, is a systematic, quickly administered, neurologic and neurobe-havioral assessment developed to document changes in neonatal behavior in the preterm infant after birth, to compare preterm infants with newborn infants of corre-sponding postmenstrual age, and to detect deviations in neurologic signs and their subsequent evolution. 88,89 The assessment takes 15 minutes or less to administer and is divided into six sections: (1) posture and tone, (2) tone patterns, (3) refl exes, (4) movements, (5) abnormal signs/patterns, and (6) orientation and behavior. Scoring is based on patterns of response rather than a summary or total score. Although the Dubowitz has a long tradition in the NICU, it is mostly used by physicians and medical residents to establish gestational age at birth by observation. For physical therapists working in the NICU, learning to admin-ister the Dubowitz will contribute to the knowledge and expertise in evaluating the tone and posture of very young infants.

NEONATAL BEHAVIORAL ASSESSMENT SCALE

The Neonatal Behavioral Assessment Scale (NBAS) is the most commonly used assessment of infant neurobehavioral functioning in the world today. 47 Used extensively in research, the NBAS includes 28 behavioral items scored on a 9-point scale and 18 refl ex items scored on a 4-point

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ASSESSMENT OF PRETERM INFANT BEHAVIOR

The Assessment of Preterm Infant Behavior (APIB) is a com-prehensive and systematic neurobehavioral assessment of preterm and high-risk infants 5,10,11 that is based on the Neo-natal Behavioral Assessment Scale. 47 Also viewed as a neuro-psychologic assessment, the APIB provides a detailed assessment of infants ’ self-regulatory efforts and thresholds to disorganization as viewed through the infant ’ s behaviors. The exam proceeds through a series of maneuvers that increase in vigor as well as tactile and vestibular demands to determine the infant ’ s self-regulatory abilities. The APIB may take up to an hour, depending on the level of stability of the infant, whereas scoring may take between 30 and 45 minutes. Writing the clinical assessment report from the APIB may take up to 3 hours, depending on the complexity of the medical history, developmental issues, and recom-mendations. 5 To be safely handled for the duration of the assessment, the infant must be physiologically stable and 32 weeks postconceptional age or older. The APIB is appropri-ate for use with high-risk infants until approximately 44 to 48 weeks of postconceptional age. Training is extensive and available for clinicians and developmental professionals in the NICU and follow-up clinical settings. More information is available at www.nidcap.org .

NICU NETWORK NEUROBEHAVIORAL SCALE

The NICU Network Neurobehavioral Scale (NNNS) is designed for the neurobehavioral assessment of medically stable drug-exposed and other high-risk infants, especially preterm infants between the ages of 30 and 46 to 48 weeks postconceptional age. 162 The NNNS is used to document and describe developmental and behavioral maturation, central nervous system integrity, and infant stress responses. Although similar to the NBAS in its content, the NNNS differs from it in the order of item administration. For example, items are skipped if the infant is not in the appropriate behavioral state, and deviations in administra-tion are recorded. Additionally, the time required to admin-ister the NNNS is shorter than the NBAS, because the NNNS is less focused on infant best performance and the infant-examiner interaction. The NNNS comprises 115 items, 45 of which require specifi c manipulation of the infant, whereas the other 70 items are observed over the course of the examination. It is divided in three parts: (1) an Examination Scale that includes neurologic items that assess passive and active tone and primitive refl exes and items that refl ect central nervous system integrity; (2) an Examiner Ratings Scale that includes behavioral items including state, sensory, and interactive responses; and (3) a Stress/Abstinence Scale that includes seven categories of items designed to capture behavioral signs of stress typical of high-risk infants and signs of neonatal abstinence or withdrawal commonly seen in drug-exposed infants. 162 The

has been used in diverse settings such as routine pediatric postpartum exams, either in hospital, clinic, or home setting, in a way that is compatible with the demands of clinical practice. Recent research suggests that the NBO may be an effective tool in helping professionals support parents in their efforts to get to know and understand their infants ’ development and can promote a positive relationship between parents and clinicians. 194,223 More information on the NBO is available at www.brazelton-institute.com .

NEWBORN INDIVIDUALIZED DEVELOPMENTAL CARE AND ASSESSMENT PROGRAM

The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) is a comprehensive approach to care for infants in the NICU that is devel-opmentally supportive and individualized to the infant ’ s goals and level of stability. 3,4 The NIDCAP is inclusive of families and professionals. Completion initially involves direct and systematic observation — without the observer manipulating or interacting — of the preterm or full-term infant in the nursery before, during, and after a caregiving event. Observation is guided by a behavioral checklist to record the caregiving event; positioning; environmental characteristics such as light, sound, and activity; and the infant ’ s behaviors. The observation begins 10 minutes before care, to observe the infant ’ s stability and behavioral reactions when undisturbed; observation continues until care is completed and for another 10 minutes thereafter or until the infant reaches preobservation stability levels. The behavior observation checklist is marked every 2 minutes for heart and respiratory rates, oxygen saturation levels, position of the infant, and the caregiving event taking place. The observation time can be minutes or hours long depending on the caregiving event and the stability of the infant. Following this observation, a nar-rative is written that describes the caregiving event from the infant ’ s perspective, highlighting in great detail the neurobehaviors of the infant in relationship with the care-giving and environmental events taking place simultane-ously. Suggestions for caregiving modifi cations to support the infant ’ s physiologic maturation and strategies at self-regulation are developed from the narrative. The physical therapist who is NIDCAP trained and certifi ed can share this information with the NICU team and provide sug-gestions for modifying the environment and caregiving activities. These suggestions may pertain to lighting, noise level, activity level, bedding, aids to self-regulation, inter-action, timing of manipulations, and facilitation of transi-tions from one activity to another. The NIDCAP has been found to be most effective in infl uencing medical outcome, 7,9 and it is suggested to be a causative agent in altering brain function and structure. 6 More information and a list of NIDCAP training centers may be obtained at www.nidcap.org .

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assessed during sucking include rate, rhythmicity, jaw excursion, tongue confi guration, and tongue movement. A pilot study determined cutoff scores for oral-motor disor-ganization and dysfunction. The NCAFS assesses parent-infant feeding interaction and evaluates the responsiveness of parents to their infant ’ s cues, signs of distress, and social interaction during feeding. Both of those assessment tools require highly specialized training but provide an excellent diagnostic framework for fragile feeders. Neonatal physical therapists may also fi nd useful the Early Feeding Skills Assessment (EFS) as a tool to assess infant readiness and tolerance for feeding and to identify a profi le of an infant ’ s specifi c skills relative to a developmental progression of oral feeding competencies. 262 There are also instruments to study the pressure generated by each suck and the length of sucking bursts such as the Kron Nutritive Sucking Apparatus and the Actifi er, 97 which can also be used as a method for stimulation of intraoral tissue in neonates.

DEVELOPMENTAL INTERVENTIONS Since the 1980s, state-of-the art medical care has progressed substantially, leading to the increased survival rate of high-risk infants. But surviving premature birth and severe illness in the neonatal period is not suffi cient. Attention also has to be given to the developmental outcome of these infants. Because a high proportion of prematurely born children show some degrees of learning disabilities that cannot be linked to a known cerebral insult, it has been suggested that some of the medical and developmental problems resulting from premature birth arise from the immature organism ’ s diffi culty in adapting to the caregiving environ-ment outside the womb. 39 Therefore, continual evaluation and modifi cation of care is necessary to ensure that the quality, quantity, and type of care provided to infants and their families promotes optimal developmental outcomes. Because of physiologic, sensory, and neurologic immaturity, neonates admitted to the NICU are vulnerable to environ-mental conditions, making quality care critical. The pio-neering work of Heidi Als and her colleagues on developmental care made us keenly aware that the NICU environment was poorly matched to the needs of preterm infants. 2,9 The goal of developmental interventions, there-fore, is to provide sensory experiences that are appropriate in type and intensity and are closely matched to the infant ’ s needs and level of sensory integration capacity, which can be monitored through the infant ’ s behaviors and responses. 39 It is also stressed that interventions of all forms, including physical therapy-based interventions, need to carefully examine the cost-benefi t to the infant on an individual basis and should be framed within a 24-hour care perspec-tive. The Annual Graven Conference on the Physical and Developmental Environment of the High Risk Infant held at the University of Florida every year has made the envi-ronment in which these infants grow its mission (for more

NNNS has been used to describe the neurobehavioral profi le of infants exposed to methamphetamine, 208,238 cocaine, 222 and marijuana. 81

TEST OF INFANT MOTOR PERFORMANCE

The Test of Infant Motor Performance (TIMP) is a test of functional motor behavior in infants for use by physical and occupational therapists and other professionals in the NICU and early intervention or diagnostic follow-up set-tings. 57 The TIMP can be used to assess the infants between the ages of 34 weeks postconceptional age and 4 months postterm. The test examines postural and selective control of movement needed for functional motor performance in early infancy. The TIMP requires approximately 25 to 45 minutes for administration and scoring. 57 Spontaneous and elicited movements constitute separate subscales. The Observed Scale consists of 13 dichotomously scored items that assess the infant ’ s spontaneous attempts to orient the body, to selectively move individual body segments, and to perform qualitative movements such as ballistic or oscillat-ing movements. 60 Examples of observed behaviors include individual fi nger and ankle movements, reaching, and align-ing the head in midline while supine. The Elicited Scale consists of 29 items scored on a 5-, 6-, or 7-point hierarchic scale. 55 Elicited behaviors refl ect the infant ’ s response to positioning and handling in a variety of spatial orientations and to visual and auditory stimuli. Examples include rolling prone with head righting when the leg is rotated across the body and turning the head to follow a visual stimulus or to search for a sound in prone.

The TIMP has been shown to have excellent test-retest and rater reliability, 55 good construct validity, 60,190 concur-rent validity, 59 and predictive validity. 57,61,100,243 The TIMP can be used for the early identifi cation of very young infants at risk for poor motor performance 61,100 and cerebral palsy as early as 2 months of adjusted age. 23,24 A shorter version used for screening purposes, the Test of Infant Motor Performance Screening Items (TIMPSI), is now available. 62 The TIMPSI takes half the time to administer when compared to the TIMP and is considered useful for fragile babies or for rapid screening that reduces the need for full TIMP testing in infants who do well on the TIMPSI. Users of the TIMPSI must have previous knowledge and training of the full TIMP in order to use it effectively. More information about the TIMP and TIMPSI can be found at www.timp.com .

ORAL-MOTOR EXAMINATION

Oral-motor examination is an advanced competency. Two useful measures are the Neonatal Oral-Motor Assess-ment Scale (NOMAS) 45,102 and the Nursing Child Assess-ment Feeding Scale (NCAFS). 25,254 The NOMAS measures components of nutritive and nonnutritive sucking. Variables

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about the effects of health care. Table 28-5 presents state-ments on Cochrane reviews relevant to the developmental interventions of the high-risk infant in the NICU. For the most part, the Cochrane reviews on kinesthetic stimulation, massage, non-nutritive sucking, and developmental care show modest short-term benefi ts with no negative effects reported. A review of the literature on the effects of bright lights in the NICU, long believed to play a role in retinopathy of prematurity (ROP), suggests that bright lights are not the cause of ROP. 212 More recently, a Cochrane review concluded that physical activity for hospitalized preterm infants may have small short-term but no long-term effects on bone mineralization and growth; the reviewers do not recommend these programs based on the limited research at this time. 229

Additional protocols currently being implemented include cycled light; supine versus nonsupine sleep position for preventing short-term morbidity and mortality in hos-pitalized spontaneously breathing preterm infants, push versus gravity for intermittent bolus gavage tube feeding of premature and low-birth-weight infants, home-based postdischarge parental support to prevent morbidity in preterm infants, body position for spontaneously breathing preterm infants with apnea, instruments for assessing readi-ness to commence suck feeds in preterm infants, and effects on time to establish full oral feeding and duration of hospitalization.

DEVELOPMENTAL FOLLOW-UP For many high-risk infants and their families, life after discharge from the NICU may involve referrals to a number of medical specialists (e.g., pulmonary, neurology, neurosur-gery, ear nose and throat, gastroenterology, craniofacial, orthopedics), a local early intervention program, and devel-opmental follow-up to a hospital-based multidisciplinary clinic. Public law 108 – 446, known as the Individuals with Disabilities Education Improvement Act of 2004, or IDEA, ensures access to a free and appropriate public education to all children with disabilities. Part C of that law guarantees access to physical therapy services in the home or other natural settings through local early intervention programs for children from birth up to age 3. Once a child is deter-mined eligible to receive early intervention services, an Individualized Family Service Plan (IFSP) is developed and reviewed every 6 months or as necessary. The IFSP includes statements of developmentally appropriate, mea-surable annual goals and a description of how the child ’ s progress toward meeting the goals will be measured. 253 More can be found on the role of the physical therapist in Chapter 29 .

The physical therapist plays an important role in the transition of infants and families to early intervention ser-vices. The physical therapist needs to communicate with the therapist or agency providing services to the infant and

information, visit www.cme.hsc.usf.edu/hri ). Spearheaded by Graven, study groups have been formed and have estab-lished guidelines for the regulation of sensory stimuli in the NICU. 112,113,154,166,213

Physical therapists should carefully assess and refl ect on the relevance of all interventions provided in the NICU. Intervention of any kind, even though theoretically believed to be helpful or even scientifi cally shown to be effective, may in fact be harmful unless individualized attention is given to an infant ’ s physiologic, sensory, and neurologic responses to the event. An infant whose sleep is already interrupted numerous times during the day and night may benefi t more from sleep protection than from additional handling. Devel-opmental interventions that are integrated into the needs of the infant and her day/night routine are most promising. Therefore, the success of an intervention program such as kangaroo care, along with its effect on the development of infants and their families, is not surprising. 96,138,198 The expe-rience of kangaroo care has been shown to foster maternal attachment, improve maternal confi dence in caring for her premature infant, 138 and improve the odds of breastfeeding at discharge from the NICU and into the fi rst year of life. 198 Feldman has shown that preterm infants receiving kangaroo care in the NICU had more mature neurobehavioral profi les on the NBAS when compared to control infants. 95 The approach is now widely accepted and is part of the care of the infant rather than being an intervention approach spe-cifi c to a particular discipline. Physical therapists should strive toward identifying developmental approaches that could easily be integrated into the routine care of the infant rather than be seen as separate interventions. Taking sound as an example, the Graven group ’ s most recent recommenda-tions on sound exposure to the in utero and ex utero fetus states that sound exposure “ should provide an environment that will protect sleep, support stable vital signs, improve speech intelligibility, and reduce potential adverse effects on auditory development. ” 113

Infants in the NICU present with a wide range of condi-tions that have an impact on their later developmental outcome, including prematurity, neonatal seizures, intraven-tricular hemorrhage, stroke, hydrocephalus, respiratory dis-tress syndrome, bronchopulmonary dysplasia, cystic fi brosis, spina bifi da, arthrogryposis, and osteogenesis imperfecta. These conditions lead to impairments that affect the infant ’ s activity levels and participation in interactions with parents and caregivers. A review of the literature on interventions in the NICU indicates that various interventions are pro-vided. Interventions include hammock positioning, 142 han-dling, 53 nursing staff education on positioning, 209 tucking, 126 and physical therapy. 52 The research is vast and consensus is diffi cult to reach because of the wide range of intervention protocols and study limitations. But some consensus is available on a range of intervention modalities through the Cochrane Collaboration, an international not-for-profi t organization that provides up-to-date systematic reviews

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TABLE 28-5 Cochrane Reviews on Topics Relevant to Developmental Interventions of the High-Risk Infant in the NICU (Full Reviews and Plain Language Summaries Are Available at www.cochrane.org )

Topic of Review Conclusive Statement

Developmental care Symington, A. J., & Pinelli, J. (2006). Cochrane Database Systematic Reviews, 2, CD001814.

The evidence suggests that these interventions may have some benefi t to the outcomes of preterm infants; however, there continues to be confl icting evidence among the multiple studies. Therefore, there is so far no clear evidence demonstrating consistent effects of developmental care interventions on important short- and long-term outcomes.

Light reduction in the prevention of ROP Phelps, D. L., & Watts, J. L. (2001). Cochrane Database Systematic Reviews, 1, CD000122.

Considerable research has been done on this, and the evidence suggests that bright light is not the cause of this problem and it does not add to the problem.

Infant position during mechanical ventilation Balaguer, A., Escribano, J., & Roqu é , M. (2006). Cochrane Database Systematic Reviews, 4, CD003668.

There is no clear evidence that body position during mechanical ventilation in newborn babies is effective in producing relevant and sustained improvement. However, putting infants on assisted ventilation in the face-down position for a short time slightly improves their oxygenation and infants in the prone position undergo fewer episodes of poor oxygenation.

Non-nutritive sucking Pinelli, J., & Symington, A. (2005). Cochrane Database Systematic Reviews, 4, CD0010701.

The review of literature suggests that weight gain was similar with and without use of a pacifi er. In two studies, preterm infants with pacifi ers had shorter hospital stays (lower hospital costs), showed less defensive behaviors during tube feedings, spent less time in fussy and active states during and after tube feedings, and settled more quickly into sleep than those without pacifi ers. Their transition to full enteral (by tube or mouth) or bottle feeds (three studies) and bottle-feeding performance, in general (one study), was easier. No negative outcomes were reported.

Cot-nursing versus incubator care Gray, P. H., & Flenady, V. (2003). Cochrane Database Systematic Reviews, 4, CD003062.

Four studies (two in developed countries) randomly assigned 173 preterm infants to being cared for in cots or incubators. In one study, the cot-nursed infants had a higher mean body temperature in the fi rst week of life. Another study showed less weight gain for infants in cots when in a heated room for the fi rst week of life. Higher numbers of infants cared for in cots were breast-fed when leaving the health care facilities in a study from Ethiopia, but the authors argued that it is not necessarily comparable to feeding practices elsewhere. Lack of information on infections from cot nursing, lack of comparable data, as well as the small number of babies involved restrict the fi ndings of this review.

Predischarge “ car seat challenge ” Pilley, E., & McGuire, W. (2006). Cochrane Database Systematic Reviews, 1, CD005386.

There is no evidence that undertaking a predischarge “ car seat challenge ” benefi ts preterm infants, and it is not clear whether the level of oxygen desaturation, apnea, or bradycardia detected in the car seat challenge is actually harmful for preterm infants. The use of the car seat challenge may cause undue parental anxiety about the safety of transporting the infant in a car seat.

Physical activity programs for promoting bone mineralization and growth Schulzke, S. M., Trachsel, D., & Patole, S. K. (2007). Cochrane Database Systematic Reviews, 2, CD005387.

This review found that physical activity might have a small benefi t on bone development and growth over a short term. There were inadequate data to assess long-term benefi ts and harms. Based on current knowledge, physical activity programs cannot be recommended as a standard procedure for premature babies.

Early discharge home with gavage feeding for stable preterm infants Collins, C. T., Makrides, M., & McPhee, A. J. (2003). Cochrane Database Systematic Reviews, 4, CD003743.

There is not enough strong evidence regarding the effects of early home discharge for preterm babies who are stable but still need gavage (tube) feeds. Although early discharge of babies who are stable but still need gavage (tube) feeds could unite families sooner and might reduce costs; this could also be a burden for the family and might increase complications in the transition from tube feeding.

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Topic of Review Conclusive Statement

Massage Vickers, A., Ohlsson, A, Lacy, J., & Horsley, A. (2004). Cochrane Database Systematic Reviews, 2, CD000390.

The review only included randomized controlled trials, studies in which a group of babies received massage or “ still, gentle touch, ” in which nurses put their hands on babies but did not rub or stroke them. In most of these studies, babies were rubbed or stroked for about 15 minutes, three or four times a day, usually for 5 or 10 days. On average, the studies found that babies receiving massage, but not “ still, gentle touch, ” gained more weight each day (about 5 grams). They spent less time in the hospital, had slightly better scores on developmental tests, and had slightly fewer postnatal complications, although there were problems with how reliable these fi ndings are. The studies did not show any negative effects of massage.

Early developmental intervention programs after hospital discharge Spittle, A. J., Orton, J., Doyle, L. W., & Boyd, R. (2007). Cochrane Database Systematic Reviews, 2, CD005495.

The early developmental intervention programs in this review had to commence within the fi rst 12 months of life, focus on the parent-infant relationship or infant development, and, although they could commence while the baby was still in hospital, they had to have a component that was delivered postdischarge from hospital. A review of trials suggests those programs for preterm infants are effective at improving cognitive development in the short to medium term (up to preschool age). There is limited evidence that early developmental interventions improve motor outcome or long-term cognitive outcome (up to school age). The variability in the intervention programs limits the conclusions that can be made about the effectiveness of early developmental interventions.

Kinesthetic stimulation for preventing or treating apnea Henderson-Smart, D. J., & Osborn, D. A. (2002). Cochrane Database Systematic Reviews, 2, CD000373. Osborn, D. A., & Henderson-Smart, D. J. (2000). Cochrane Database Systematic Reviews, 2, CD000499.

Laying preterm babies on oscillating mattresses has not been shown to help prevent apnea. Three controlled studies have used different gentle rocking motions (irregularly oscillating water beds, regularly rocking bed trays, or a vertical pulsating stimulus) to reduce the occurrence of apnea in a total of 49 babies. However, there was no clinically useful reduction of periods of apnea, although only a small number of infants were studied. Shorter breathing pauses were reported to be reduced by one study, but it is not thought to be clinically important. No harm has been reported to have been done to the preterm infants with these interventions.

Positioning for acute respiratory distress Wells, D. A., Gillies, D., & Fitzgerald, D. A. (2005). Cochrane Database Systematic Reviews, 2, CD003645.

A total of 21 studies were assessed altogether. Three quarters of the 436 children were preterm babies and were mostly (71%) ventilated by machine. The prone position was better than supine for oxygenating the blood, but the difference was small. The increase in oxygen saturation on average increased by 2%. This fi nding was based on eight studies (183 children, 153 preterm and 95 ventilated) measuring this outcome. The rapid rate of breathing with respiratory distress was slightly lower in the prone position (on average four breaths/min lower) based on fi ve studies (100 infants aged up to 1 month, 59 ventilated). There were no obvious differences with other positions. Note: It is important to remember that these children were hospitalized. Therefore, given the association of the prone position with sudden infant death syndrome (SIDS), the prone position should not be used for children unless they are in hospital and where their breathing is constantly monitored.

Kangaroo mother care to reduce morbidity and mortality in low birthweight infants Conde-Agudelo, A., & Beliz á n, J. M. Kangaroo mother care to reduce morbidity and mortality in low birthweight infants. (2003). Cochrane Database Systematic Reviews, 2, CD002771.

Kangaroo mother care (KMC) involves skin-to-skin contact between mother and her newborn, frequent and exclusive or nearly exclusive breast-feeding, and early discharge from hospital. Compared with conventional care, KMC was found to reduce severe illness, infection, breast-feeding problems, and maternal dissatisfaction with method of care and improve some outcomes of mother-baby bonding. There was no difference in infant mortality. However, serious concerns about the methodological quality of the included trials weaken credibility in these fi ndings. More research is needed.

TABLE 28-5 Cochrane Reviews on Topics Relevant to Developmental Interventions of the High-Risk Infant in the NICU (Full Reviews and Plain Language Summaries Are Available at www.cochrane.org)—cont’d

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and level of acuity of the infants, numerous exchanges with health care professionals working together in the NICU, and the opportunity to positively shape this new family unit. This highly technical subspecialty area offers the oppor-tunity for physical therapists to provide developmental services within a framework that is family centered and that views the infant as fully participating in the develop-ment process, principles that are central to pediatric physical therapy practice. Although each physical therapist ’ s expe-rience is unique and will differ based on practice setting (e.g., children ’ s hospital, birthing hospital), we highlight three challenges to physical therapist practice in the NICU.

PREPARATION

According to the practice guidelines endorsed by the Ameri-can Physical Therapy Association (APTA), 256 physical thera-pists in the NICU should meet a series of competencies across multiple domains of neonatal clinical practice ranging from theoretic frameworks to social policy governing practice involving high-risk infants. In addition, physical therapists should participate in a minimum of 6 months of precepting in the NICU. Many NICUs lack an established training program where experienced clinical specialists provide precepting and ongoing mentoring to physical therapists new to neonatal care. Physical therapists may need to advocate for education and training resources. One resource is the NICU Special Interest Group within the Section on Pediatrics of the APTA (see www.pediatricapta.org/special-interest-groups/neonatology/index.cfm for more information).

METHOD OF SERVICE DELIVERY

Traditional models of service delivery for inpatient pediatric rehabilitation may not match the needs of infants and fami-lies in the NICU. Although therapists in other subspecialties within the hospital typically see 8 to 10 patients per 8-hour day (from 9 a.m. to 5 p.m.), physical therapists in the NICU are constrained by frequent medical procedures, strict feeding schedules, evening parental visiting schedules, and infection considerations for patients seen outside of the NICU. As such, the model of service delivery needs to be fl exible with regard to productivity demands, work hours, and managing schedules of patients other than those in the NICU. The needs and realities of the rehabilitation depart-ment and assuring equity of responsibility among all thera-pists are additional considerations.

PROFESSIONAL ROLE DELINEATION

Depending on NICU staff resources, physical therapists may work closely with occupational therapists, speech lan-guage pathologists, and developmental specialists. As such,

family. Ideally, providers from the local early intervention agency would meet the family before the infant is discharged from the NICU and thus ensure a smooth and less stressful transition into the family ’ s community. When this situation is not possible, the physical therapist can make contact with the community therapist and provide as much information as possible on the infant ’ s current development and inter-ventions while in the NICU.

Many level III nurseries have a developmental follow-up clinic for high-risk infants. Clinics vary in staffi ng and criteria for follow-up care. Factors such as birth weight, gestational age, Apgar scores, time on a ventilator, IVH, seizures, and environmental factors such as maternal drug or alcohol use are commonly used criteria. These follow-up programs monitor the health outcomes of graduates of the NICU and provide feedback to the developmental follow-up clinic. 249

Results of developmental assessments administered at the follow-up clinic are useful in determining whether special-ized therapy services are necessary beyond the provision of general recommendations for development and parent edu-cation. Referrals for nutrition, audiology, and ophthalmol-ogy are also made when necessary. As a team member in the follow-up clinic or early intervention, the physical therapist plays an important role in the examination and monitoring of neuromotor development, provides parent education and anticipatory guidance, and assists the family with coordina-tion of care and referrals to other professionals and com-munity agencies when appropriate.

On average, infants remain hospitalized in the NICU until 38 to 40 weeks of corrected gestational age. 181 For a subpopulation of infants, although intensive medical care is no longer required, discharge home is not yet appropriate because nutritional needs are not being met through oral feeding. 122 These infants typically present with severe chronic lung disease and concomitant feeding issues, neonatal abstinence syndrome requiring continued medical manage-ment, severe neurologic impairments, and in some cases are postsurgical. They typically require more intensive physi-cal therapy than can be provided by admission to a pediatric rehabilitation hospital or a community early intervention program. In both settings, the physical therapist examines and evaluates infants and, in consultation with the physical therapist from the NICU, develops an individualized plan to facilitate progression of developmental milestones, age-appropriate feeding skills, and social interaction.

PRACTICE IN THE NICU: REWARDS AND CHALLENGES

Newborn medicine changes rapidly with the advent of new drugs and technology. The NICU work environment is cutting edge, fast paced, and high stress, but it affords the physical therapist incomparable learning opportunities because of the exceptional range of medical conditions

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professional role delineations related to oral feeding, posi-tioning, infant massage, and facilitation and handling may become blurred. According to the APTA, physical therapists are experts in examination and intervention of impairments in body functions and structures and motor activity limita-tions of the musculoskeletal and neuromuscular system. 256 To this end, this expertise may cross traditional professional boundaries and physical therapists should work collabora-tively with colleagues from other disciplines while advocat-ing for the growth of our profession.

SUMMARY

The special care nursery is a specialized setting for providing high technological medical interventions to newborn infants who are unable to sustain basic physiological processes secondary to prema-ture birth or other neonatal complications. Provision of services to infants and families in the special care nursery is a subspecialty area of pediatric physical therapist practice. Knowledge of fetal and infant development, medical complications, and competency in monitoring

vital signs and behaviors are essential for providing therapy services in the special care nursery. The examination and evaluation process includes issues identifi ed by families and members of the team and observation of how the infant is positioned and responds to caregiv-ing procedures. Standardized tests and measures are useful in evalu-ation of infant development and identifi cation of areas of need.

Depending on an infant ’ s needs and ability to tolerate sensory stimulation and movement, interventions may include positioning, strategies to minimize physiological stress, and sensory-motor devel-opment. Prevention of musculoskeletal impairments is an important outcome of intervention. Communication and coordination of care with team members, families, and external agencies such as early intervention providers are important components of intervention. Perhaps the most important role of the physical therapist is education and instruction of family members in the infant ’ s behavioral cues and responses and handling and caring for the infant in anticipation of the transition to home. After discharge, an important role of the physical therapist in high-risk follow-up clinics is to monitor infant motor development, address family information needs and concerns, and coordinate care with community service providers.

CASE STUDIES

Two case studies are presented to illustrate how the contents of the chapter apply to practice in the NICU. The fi rst case is about a little boy, born extremely preterm, who spent over 4 months in the NICU. He presents with signifi cant respiratory diffi culties, which affect his oral feeding development. As a result, the family faces a decision about surgical intervention versus further hospitalization in a rehabilitation setting. The second case is about a little girl, born full-term, with Down syndrome. There is concern from the medical team that the infant ’ s mother has not bonded with her daughter. Following a particularly powerful session with the physical therapist, the parents gain a new appreciation for their daughter ’ s strengths and competencies.

Both patients were hospitalized in the same level III NICU. The NICU rehabilitation team consists of a physical therapist who is an APTA board-certifi ed pediatric clinical specialist employed full time and two therapists (one physical therapist and one occupational therapist) employed half time. Rehabilitation team members are part of a larger interdisciplinary team that includes medicine, social work, nutrition, and nursing. Physical therapists generally spend approxi-mately 30 to 60 minutes with each patient and family, depending on the context of the session (e.g., oral feeding, developmental evalua-tion, discharge teaching). In addition to patient care, physical thera-pists participate in daily medical rounds and weekly developmental and feeding rounds.

“ Travis ” Examination

History

Travis was born precipitously at 24 2/7 weeks weighing 590 grams. His ApGARS were 4, 7, and 8 at 1, 5, and 10 minutes, respectively. He was intubated in the delivery room, received mechanical ventilation, and was transferred to the NICU. Upon admission, he received one dose of artifi cial surfactant. During the fi rst 2 weeks of life, he required dopamine, received two blood transfusions, and was treated with hydrocortisone to maintain a stable blood pressure and adequate perfusion. Travis ’ s cardiovascular system was compromised by a patent ductus arteriosus, which was treated with ibuprofen. He required phototherapy treatment for 12 days for hyperbilirubinemia, and he was treated with antibiotics for presumed early-onset infection.

Travis remained on mechanical ventilation until 33 weeks CGA when he transitioned to continuous positive airway pressure (CPAP). Travis remained on CPAP until 36 weeks when he was able to be weaned to 50 ml of oxygen that he received through a low-fl ow nasal cannula. At 33 weeks, Travis received a 14-day course of antibiotics for medical necrotizing enterocolitis. At 36 weeks, he was diagnosed with gastroesophageal refl ux (GER) and was started on antirefl ux medications. All Travis ’ s head ultrasounds revealed no intraventricular

Continued

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CASE STUDIES—cont’d

hemorrhage. His eye exams revealed state II retinopathy of prematu-rity in both eyes.

Travis ’ s mother visits the NICU daily and is very involved in Travis ’ s care. His 13-year-old sister and father visit on weekends. The majority of Travis ’ s extended family resides in Korea, and the family has few social supports.

Travis was referred to physical therapy at 4 weeks of age (28 weeks PCA). His primary nurse reported that Travis was “ stiff, ” “ arched a lot, ” and “ seemed irritable ” during his routine care.

Observation

Travis was seen at 28 weeks PCA for an initial physical therapy examina-tion. Travis ’ s mother was present. The physical therapist introduced herself and described her role in the NICU. She explained that Travis was referred to physical therapy because he is at risk for developmental diffi culties. Moreover, once home, babies like Travis are likely eligible and would benefi t from physical therapy as part of early intervention services. There are many interventions, however, that can start even earlier — while Travis is still in the hospital — to promote his development and help family members to care for his needs when he goes home. The physical therapist described for Travis ’ s mother what the examina-tion would consist of — observing Travis ’ s likes and dislikes during his routine care, his ability to self-soothe, and his movements with his arms and legs. The therapist acknowledged that Travis ’ s mother knows him best and asked her to participate in the evaluation.

Travis was supine with his head turned to right side, swaddled, and he had a positioning roll around his lower body. Medical fragility precluded administering a formal, standardized evaluation. The phys-ical therapist completed a neurobehavioral observation during Trav-is ’ s routine care in order to identify factors with defi cits. 257 The developmental evaluation consisted of taking Travis ’ s temperature, changing his diaper, and repositioning him, which took approximately 25 minutes. Body Functions and Structures Autonomic. Upon arrival, Travis ’ s heart rate was in the 160s, respira-tory rate was in the 60s, and oxygen saturation (SaO 2 ) was 95% to 98%. His color was pink and his respirations appeared rhythmical. He demonstrated decreased autonomic stability at several points during the evaluation. He paled and startled when his blanket was unwrapped; his movements became tremulous while his temperature was being taken; and he had several oxygen desaturations during his diaper change (SaO 2 < 85), especially when his legs were lifted. Travis ’ s autonomic instability resolved with gentle containment to his head and feet during all aspects of his care, offering Travis breaks and opportunities to self-regulate (e.g., tucking, grasping, bracing his feet) and minimizing the environmental stimuli (e.g., shielding the light and speaking softly during his care). Motor. While supine, Travis was observed to retract his scapulae and externally rotate his arms; his legs were externally rotated and abducted, and his trunk and head were not in midline. His grasp was moderately strong on both sides, and his suck was weak and nonrhythmical when tested with

his pacifi er in supine. Overall, Travis ’ s tone was low, and he made infrequent attempts at active fl exion movements. When repositioned in left side lying, Travis demonstrated more active fl exion movements (hands to mouth and midline, tucking of his lower extremities) and the quality of his suck improved. State and Social Interaction Travis was in a drowsy state during most of the examination. During his diaper change, he became irritable, demonstrating a weak cry. With containment and environmental modifi cations (e.g., shielding the light), he was able to open his eyes briefl y and make attempts to focus on the therapist ’ s face. At this point, the therapist encouraged Travis ’ s mother to engage in eye contact with him. Travis maintained social interaction for a few brief seconds, and Travis ’ s mother shared that she had never seen him open his eyes for that long.

Throughout the examination, the physical therapist described Tra-vis ’ s thresholds for overstimulation and, more important, his attempts and successes at self-regulation. Travis ’ s mother had already noticed that he was “ sensitive ” to the bright lights in the room, and she attempted to reduce the light while changing his diaper. During the examination, she learned that Travis benefi ts immensely from con-tainment during and after diaper changes. She shared with the thera-pist that she was excited to use this new technique because she often feels “ helpless ” at the bedside. Activity and Participation Travis ’ s immature autonomic, motor, and state systems limit his ability to fully participate in the developmental tasks of a newborn. Travis requires increased supports to achieve and maintain self-regulation during routine care. He has limited ability to achieve a calm awake state to interact with his caregivers. Travis ’ s immature feeding and oral motor skills coupled with his gastroesophageal refl ux often prevent feeding from being a positive experience for Travis.

Based on Travis ’ s participation limitations and his mother ’ s con-cerns (e.g., his sensitivity to light and limited ability to keep his eyes open to look at her), the goals of physical therapy were to (1) mini-mize signs of autonomic instability during routine care; (2) increase active fl exion movements, fi rst in side lying, and then progressing to supine; (3) increase postural control, fi rst in side lying, and then progressing to supported sit; (4) increase strength and coordination of his non-nutritive suck and then his nutritive suck when develop-mentally appropriate; (5) increase time in calm alert state; and (6) increase visual fi xation and auditory processing skills with decreasing environmental modifi cations.

Outcomes for Travis were to (1) demonstrate age-appropriate neuromotor skills, such as full active fl exion patterns in side lying and supine to allow for self-soothing skills (e.g., hands to mouth and midline), maintaining head in midline for brief periods to allow for visual fi xation on caregiver ’ s face, and emerging postural reactions to allow for tolerance of a variety of upright positions for caregiving and social interaction; (2) take all nutrition by bottle, demonstrating age-appropriate suck-swallow-breathe coordination, with each feeding lasting no more than 30 minutes; (3) demonstrate organized sleep/

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EVIDENCE TO PRACTICE 28-1

CASE STUDY “ TRAVIS ”

PLAN OF CARE DECISION

The decision to provide gentle containment during care was based on a review of the literature examining the effect of gentle touch on medically fragile infants. In this review, Harrison included six studies that examined the effect of gentle touch provided daily (ranging from 20 minutes total per day to 10 to 15 minutes, three times per day) to infants in the NICU who were medically fragile. The results suggest that gentle touch is associated with immediate neurobehavioral benefi ts (e.g., decreased motor activity, fewer stress signals), but the long-term benefi t (e.g., decreased length of stay, improved weight gain, fewer days on supplemental oxygen) has not been established.

FAMILY PREFERENCES

In a meta-analysis of literature examining parent preferences, Cleveland examined 60 studies of the needs and preferences of parents of infants in the NICU. 2 A common theme, germane to the intervention of containment, emerged. Parents often reported feeling excluded from the care of their infant and wished to have more contact with their infant (i.e., holding, touching). The authors suggested that NICU practitioners provide opportunities for “ guided participation ” for parents. 1. Harrison, L. L. (2001). The use of comforting touch and massage to

reduce stress in preterm infants in the neonatal intensive care unit. Newborn and Infant Nursing Reviews, 1 (4), 235 – 241.

2. Cleveland, L. M. (2008). Parenting in the neonatal intensive care unit. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 37, 666 – 691.

Interventions to increase active fl exion movements included side lying positioning with gentle facilitation to decrease scapular retrac-tion, shoulder elevation, hip external rotation, and abduction. Posi-tioning strategies included use of a length-wise towel roll under the abdomen during prone positioning and a long posterio-lateral blanket roll placed at the infant ’ s back and between the legs and in front of the abdomen while side lying. In addition, a large “ U ” -shaped blanket roll supported the infant ’ s lower body and trunk to provide additional boundaries and containment. Pictures of the infant in optimal positions were taken and hung at the bedside to promote continuity of care ( coordination, communication, and documenta-tion) . When Travis transitioned to a low-fl ow nasal cannula, the physical therapist treated him at the bedside and encouraged sup-ported upright activities and adapted prone positioning with a small towel roll under Travis ’ s chest. These activities encouraged age-appropriate activation of postural muscles to reduce the likelihood of atypical head molding. 185

Interventions to promote quiet awake state and age-appropriate social interaction included environmental modifi cations and parent and staff education. Travis ’ s incubator was covered with a dark blanket to reduce environmental light exposure, 158 his eyes were

shielded during procedures and physical examinations, the ambient lights were kept low as often as possible, 9 and strategies were imple-mented to reduce noise 138 proximate to Travis ’ s incubator (e.g., not placing items on top of the incubator, opening and closing incubator doors slowly, and speaking quietly during social interaction).

Bottle-feeding was introduced at 39 weeks when Travis ’ s respira-tory system was more stable and he began to demonstrate feeding readiness cues (e.g., waking for his feedings, rooting, and bringing his hands to his mouth). To promote age-appropriate feeding skills and feeding as a positive experience, Travis was offered non-nutritive sucking before feeding 215 ; the physical therapist externally paced Travis during feeding 156 and utilized a slow-fl ow nipple. 74

During each session, the therapist and mother partnered to com-plete Travis ’ s routine care (i.e., diaper change and temperature), and then the therapist demonstrated increasingly more complex develop-mental tasks and caregiving activities (e.g., sessions began in the incu-bator in side lying and progressed to activities on the therapist ’ s lap, fi rst in side lying, then supine, prone, and upright). Typically, when the therapist introduced a new developmental task or caregiving activity, she demonstrated it to Travis ’ s mother, discussed how it could promote Travis ’ s development, and described Travis ’ s response — including his

Continued

wake cycles; (4) have parents be independent in all of Travis ’ s care, handling, and developmental activities; and (5) initiate referrals for family and community supports before discharge.

Intervention The physical therapist saw Travis two to three times per week. Therapy sessions took place at a care time when Travis ’ s mom was present in order to facilitate parent-infant bonding and shared observations of Travis and to partner with Travis ’ s mother in his physical therapy plan of care ( patient/client instruction ). An individualized developmental care plan was created for Travis, reviewed with his parents, and

incorporated into his medical chart. The plan included a physical therapy clinical pathway, developed by the therapist, that delineated his goals, plan of care (e.g., progression of developmental interven-tions), and recommendations for caregivers.

Interventions ( procedural interventions ) to promote autonomic stability during care included implementing side-lying diaper change, whereby the diaper change is completed with the infant in side-lying to prevent excessive lifting of the legs, which contributes to autonomic instability (Duplesis, 2008). In addition, gentle containment to Travis ’ s head and feet were provided during routine care to promote self-regulation and autonomic stability.

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strengths and diffi culties with the task. Then the therapist encouraged Travis ’ s mother to engage in the development task with Travis and provided support and guidance (oral and hands on) as needed.

Reexamination

Test of Infant Motor Performance (TIMP) At 36, 38, and 40 weeks, the physical therapist evaluated Travis ’ s development using the TIMP. The TIMP was chosen because (1) the test is appropriate for use from 32 weeks ’ PCA until 4 months post term; (2) it is a valid and reliable test; (3) the TIMP discriminates infants with various risks for delays; and (4) the TIMP can identify very young infants at risk for poor motor performance. 57,61,100,243 More-over, the PT chose a time when Travis was awake and alert and would likely tolerate the 45- to 60-minute TIMP session. At 36 weeks, Travis ’ s TIMP raw score was 41, which indicates that Travis is at increased risk for developmental diffi culties. 58 He has limited selective motor control, poor postural control, and immature visual and auditory tracking skills. Neonatal Oral Motor Assessment Scale (NOMAS) Because of slow progression with bottle-feeding skills (i.e., poor endurance and decreased oral motor coordination) and a hoarse cry, Travis underwent further evaluation of his oral motor skills. The physi-cal therapist completed a feeding evaluation at 40 weeks with Travis using the NOMAS. The NOMAS was chosen because the scale is (1)

appropriate for use with fragile feeders and can be completed in one feeding session, (2) reliable and valid, (3) identifi es infants with feeding delays and dysfunction, and (4) identifi es very young infants at risk for long-term feeding diffi culties. 124,203

Based on Travis ’ s atypical jaw excursion, tongue movement, and suck-swallow-breathe pattern, his feeding was categorized as dys-functional. The attending neonatologist ordered a modifi ed barium swallow (videofl uoroscopic examination), which revealed that Travis was aspirating thin, but not thick, liquids.

A family meeting with Travis ’ s care team was held when Travis was 40 weeks CGA. The physical therapist reported on Travis ’ s prog-ress with the plan of care. Travis had achieved several of his out-comes. He demonstrated organized sleep/wake cycles, and his parents were independent in all Travis ’ s care and his developmental program. However, Travis ’ s motor skills continued to be delayed and he was not fully bottle-feeding. At the team meeting, discharge plans presented to the parents included transfer to a pediatric short-term rehabilitation hospital or the placement of a gastrostomy tube and transfer home with community supports. Travis ’ s parents were appre-hensive about the surgery associated with the gastrostomy tube and opted to transfer Travis to the short-term rehabilitation facility. At this point, the physical therapist completed a full discharge report describ-ing Travis ’ s progress as well as his current physical therapy needs.


CASE STUDY “ TRAVIS ”


There is growing evidence to suggest that preterm infants have long-term feeding diffi culties. 1 These include coughing and choking with feedings, not tolerating food textures, and developmental of oral aversions. Furthermore, oral feeding diffi culties are particularly stressful for parents.

There is a paucity of literature investigating the effect of short-term rehabilitation on improved feeding development of preterm infants. The purpose of a short-term rehabilitation program is to achieve optimal feeding outcomes — that is, take all nutrition by bottle demonstrating age-appropriate suck-swallow-breathe coordination, with each feeding lasting no more than 30 minutes. This is often achieved through interdisciplinary interventions to increase oral motor coordination, promote endurance and self-regulation during feeding, and foster parental independence in positioning, handling, and feeding-specifi c interventions. This intensity and specifi city of therapeutic intervention is not available in the NICU setting. Furthermore, in Travis ’ s NICU, an experienced interdisciplinary feeding team conducts feeding evaluations, creates feeding plans, and facilitates discharge planning for infants who reach 42 weeks

CGA and are not fully bottle or breast-feeding. Based on Travis ’ s presentation, the team drew from its practice knowledge in feeding-related discharge planning to suggest that Julia may be a good candidate for short-term rehabilitation and that her prognosis for safe, effi cient bottle-feeding in 8 to 10 weeks was good.

FAMILY PREFERENCES

In a meta-analysis of literature examining parent preferences, Cleveland examined 60 studies of the needs and preferences of parents of NICU hospitalized infants. 2 A common theme, germane to the clinical decision making of discharge planning for infants with feeding diffi culty, emerged. Parents often reported feeling excluded from the care of their infant and wished to be more involved in the clinical decision making related to their infant ’ s care. The author suggested that NICU practitioners provide opportunities for parent empowerment and inclusion in decision making. 1. Hawdon, J. M., Beauregard, N., Slattery, J., & Kennedy, G. (2000).

Identifi cation of neonates at risk of developing feeding problems in infancy. Developmental Medicine and Child Neurology, 42, 235 – 239.

2. Cleveland, L. M. (2008). Parenting in the neonatal intensive care unit, Journal of Obstetric, Gynecologic, and Neonatal Nursing, 37, 666 – 691.

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“ Julia ” Julia is a full-term (38 2/7 weeks) little girl born via cesarean section weighing 3025 grams. She was diagnosed prenatally with Down syn-drome and tetralogy of Fallot. Her Apgar scores were 5, 7, and 8 at 1, 5, and 10 minutes, respectively. She received supplemental oxygen via mask initially but then transitioned to room air. She presented with hyperbilirubinemia and received phototherapy treatment. Ini-tially, Julia received intravenous fl uids and then began to bottle-feed small amounts. She tolerated increasing amounts of formula but then developed bloody stools. Julia remained on IV fl uids for 4 days until a repeat abdominal x-ray revealed normal bowel. She tolerated increasing volumes of formula well.

Julia ’ s parents live 2 hours away and visit every third day. Julia has three older sisters at home, ages 2, 5, and 7. Julia ’ s nurse shared with the physical therapist that Julia ’ s mother had a lot of questions and concerns about Julia ’ s development, and the nurse was concerned that Julia ’ s mom had not yet bonded with Julia.

Observation

Julia was referred to physical therapy at 5 days of life. The physical therapist conducted a neurobehavioral observation, using the Neurobehavioral Observation system (NBO), with Julia ’ s parents.


CASE STUDY “ JULIA ”


The decision to use the NBO to guide the initial observation and subsequent interventions is supported by the tool ’ s purpose as a relationship-building instrument to highlight, for parents, the infant ’ s unique strengths and competencies. 3 , 4 Furthermore, the NBO can be readily implemented in a busy NICU setting, and it is easy and quick to administer, making it ideal for medically fragile infants with limited endurance and low threshold for loss of self-regulation. Evidence suggests that the NBO is effective in helping in promoting the clinician-family relationship and the parent-infant relationship, and it helps parents to better understand their infant ’ s unique strengths. 2 Furthermore, the NBO has been adapted to offer a clinical framework for providing

interventions for the medically fragile or developmentally vulnerable infant. 1 1. Blanchard, Y., & McManus, B. M. (under review). Clinical framework for

physical therapist intervention with families of high-risk infants. Pediatric Physical Therapy.

2. Nugent, J. K., & Blanchard, Y. (2005). Newborn behavior and development: Implications for health care professionals. In K. M. Thies, & J. F. Travers (Eds.), The handbook of human development for health care professionals. Sudbury, MA: Jones & Bartlett.

3. Nugent, J. K., Keefer, C. H., Minear, S., Johnson, L., & Blanchard, Y. (2007). Understanding newborn behavior & early relationships: The newborn behavioral observations (NBO) system handbook. Baltimore: Brookes.

4. Nugent, J. K., Blanchard, Y., & Stewart, J. S. (2008). Supporting parents of premature infants: An infant-focused family-centered approach. In D. Brodsky & M. A. Ouellette (Eds.), Primary care of the premature infant. Elsevier.

The physical therapist selected the NBO because it is a relationship-building tool rather than an assessment. That is, although the thera-pist could develop her clinical impressions of Julia based on the NBO, the main purpose is to partner with parents to observe their baby. Moreover, the NBO utilizes a strength-based approach (i.e., rather than highlighting the infant ’ s impairments), which the therapist employed to empower Julia ’ s parents and encourage them to partici-pate in the social interaction.

During the NBO, the physical therapist engaged the parents by asking questions about Julia ’ s likes and dislikes and the parents ’ observations of Julia ’ s developmental competencies. For example, when asked what Julia liked, the mother reported, “ I don ’ t really know. . . . She ’ s so different from my other kids. ” When asked if he noticed if Julia was starting to look and listen to things in her environment, Julia ’ s father responded, “ She can ’ t really do any of that. . . . She has Down syndrome. She failed her hearing exam. . . . We think she might be deaf. ” As the physical therapist

administered the NBO, the parents moved closer and became more engaged in the observation. At one point when Julia brought her hands to her face and began to suck on her thumb, Mom became teary and stated, “ She might be a thumb-sucker; all of her sisters sucked their thumb! ” The physical therapist asked the father to call Julia ’ s name. Almost immediately she turned her eyes toward her father. The dad became quite excited and said, “ She can hear. She knows my voice! ”

Body Functions and Structures

Autonomic. Upon arrival, Julia ’ s heart rate was in the 140s, respiratory rate was in the 40s and oxygen saturation was between 90% to 94%. Julia ’ s color was generally pink with slight paling around her mouth and forehead. Julia demonstrated diffi culty regulating her autonomic system (i.e., mottled skin on her chest and increased paling around her mouth, eyes, and nose) when she was unswaddled, was required to hold her head up in supported sit, and while prone. She

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demonstrated pink coloring and rhythmical respirations when she was tucked with positional supports with her hands near her face and mouth. Motor. Julia was observed to have generalized hypotonia. She demonstrated diffi culty with active fl exion movements, hand grasp, and coordinated suck when positional supports were removed. Because she had an initial moderate head lag, the physical therapist opted not to perform pull-to-sit. When supported at the trunk and assistance was provided to maintain fl exed and midline position of her extremities, Julia made attempts at righting her head in supported sit. Julia was able to bring her hands to midline and was observed to have a stronger, more coordinated suck while in side lying. State. Julia was able to maintain a quiet awake state when tasks were modulated and appropriately paced to reduce her fatigue. Julia became fussy and then appeared in a diffuse state between sleep and awake while prone and when asked to look and listen simultaneously. Social Interaction/Responsivity. Julia was able to visually fi xate to face and the red ball when swaddled and with limited auditory environmental stimuli. She had diffi culty coordinating looking and listening. Activity and Participation Julia is limited by her ability to fully participate in the developmental tasks of a newborn. She requires increased supports to achieve and maintain self-regulation during routine care. She has limited endur-ance to maintain a calm awake state to interact with caregivers. Julia ’ s immature feeding and oral motor skills often prevent feeding from being a positive experience for Julia.

Goals and Outcomes

Based on Julia ’ s participation limitations and concerns voiced by Julia ’ s parents, the goals of physical therapy were to (1) tolerate handling and care with less fatigue and autonomic instability, (2) increase active fl exion patterns, (3) increase postural control of head and neck muscles, (4) increase time in quiet awake state, and (5) increase visual tracking and auditory processing skills.

Outcomes for Julia were to (1) demonstrate age-appropriate neuromotor skills, such as full active fl exion patterns in side lying and supine to allow for self-soothing skills (e.g., hands to mouth and midline) maintaining head in midline for brief periods to allow for visual fi xation on caregiver ’ s face and emerging postural reactions to allow for tolerance of a variety of upright positions for caregiving and social interaction; (2) take all nutrition by bottle demonstrating

age-appropriate suck-swallow-breathe coordination with each feeding lasting no more than 30 minutes; (3) demonstrate organized sleep/wake cycles; (4) have parents be independent in all care, handling, and developmental activities for Julia; and (5) initiate referral for family and community supports before discharge.

Intervention

Julia remained in the hospital for an additional week and was seen every other day by the physical therapist. Interventions to increase endurance and promote autonomic stability during motor activities included modulating Julia ’ s activity (e.g., adapting timing, pacing, and activity requirements to match Julia ’ s capacity for self-regulation) and offering frequent rest breaks at regular intervals rather than waiting until she could not maintain self-regulation (Blanchard & McManus, under review). Interventions ( procedural interventions) to promote active fl exion patterns included the use of posterior shoulder and pelvic positional rolls during therapy sessions. Parents were educated ( patient/client instruction ) about the benefi ts of positional supports (i.e., to promote forward shoulders and fl exed hips) while Julia is awake and alert. In addition, the physical therapist reviewed the American Academy of Pediatrics guidelines for safe sleep, including supine sleeping without use of positional rolls or supports. 16 Interven-tions to increase social interaction skills included presenting one form of stimulation (i.e., visual or auditory) at a time. 41 In addition, social interaction activities were completed when Julia was in a position that supported her motor system (e.g., supine with towel rolls posterior to her shoulders and hips or semiupright and swaddled). The physical therapist wrote a developmental plan of care for Julia. The physical therapist shared the plan of care with Julia ’ s parents and care team and elicited feedback before including the plan in Julia ’ s medical chart ( coordination, communication, and documentation).

Reexamination

A discharge meeting was held with Julia ’ s family and team. The physical therapist shared updates on Julia ’ s progress from a rehabilitation per-spective. Julia made excellent progress with her plan of care and had achieved her developmental outcomes. The physical therapist completed a referral for early intervention and the Down syndrome follow-up clinic at a children ’ s hospital about an hour away from Julia ’ s home.


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968

30 The Educational Environment

SUSAN K. EFFGEN PT, PhD, FAPTA • MARCIA K. KAMINKER PT, DPT, MS, PCS

Almost from the start of physical therapy in the United States, physical therapists have worked in educational environments. The civil rights movement of the

1960 ’ s and federal legislation of the 1970 ’ s, however, marked the beginning of major changes in services for all children with special needs in school settings. As a consequence of continued federal and state mandates for the education of students with disabilities, the school system has become the practice setting that employs the greatest number of pediat-ric physical therapists. Since 1975, a generation of physical therapists has been instrumental in advocating for school-based practice and the development of standards for prac-tice. 36 The educational setting is unique in emphasizing individualized outcomes for student participation in the education program and continues to present opportunities and challenges for pediatric therapists. This chapter reviews the history of the delivery of physical therapy in educational environments, in addition to discussing federal legislation and court cases that have changed how children with dis-abilities are educated and receive physical therapy. Key topics related to physical therapy in educational environments are presented, including inclusive education, models of team interaction, service-delivery models, the individualized edu-cational program (IEP), and intervention strategies. Critical issues facing school-based physical therapists are also highlighted.

BACKGROUND Although the history of physical therapy in the United States is traced to “ reconstruction aides ” serving the injured of World War I, it can also be traced to the service of “ crippled children, ” especially those with poliomyelitis. In major cities early in the 20th century, children with physical disabilities were served in hospitals and special schools. The children had a variety of diagnoses, including poliomyelitis and spastic paralysis, 16,50 cardiac disorders, “ obstetric arms ” (bra-chial plexus injuries), bone and joint tuberculosis, clubfeet, and osteomyelitis. 11,16,89 By the 1930 ’ s, numerous articles had been published describing the delivery of physical therapy in these special schools. 11,89,112,125 Epidemics of poliomyelitis increased the need for special schools and physical thera-pists. After the vaccine for poliomyelitis was developed in the 1950 ’ s, the need for special schools was temporarily reduced,

until public awareness increased regarding the needs of chil-dren with other disabilities.

Historically, most children in special schools had normal or near-normal intelligence. Many schools required children to be toilet trained, and some required children to walk independently. This trend to serve only those with physical disabilities and normal intelligence continued in many areas of the United States until schools were federally mandated in 1975 to serve all children with disabilities by the enact-ment of Public Law (PL) 94-142, the Education for All Handicapped Children Act.

FEDERAL LEGISLATION AND LITIGATION A number of social and political events paved the way for the enactment of the Education for All Handicapped Chil-dren Act. In 1954, the historic U.S. Supreme Court decision regarding segregated schools was handed down: Brown v. Board of Education of Topeka. Separate-but-equal schools were found inherently unequal. This Supreme Court deci-sion was to end the segregated education of African-American children, but the principles and foundation of this case could also apply to segregated schools for those with disabilities. The call for social equality had begun and would eventually include those with disabilities. President Kennedy ’ s personal experience with his sister who had a dis-ability expedited his establishment in 1961 of the President ’ s Panel on Mental Retardation. Television documentaries exposed institutions in New York, and Blatt and Kaplan ’ s book, Christmas in Purgatory: A Photographic Essay on Mental Retardation , 13 raised national concern for the care and treatment of individuals with disabilities. Leaders such as Wolfensberger 130 were infl uential proponents of deinstitutionalization and normalization. Cruickshank noted that “ as is usually the case with major changes in social policy, the normalization trend is not based on empirical data showing greater effectiveness or effi ciency of the changes proposed by its advocates ” (p. 65). 24 Instead, the normaliza-tion trend focused on the civil rights of individuals, a pre-vailing anti-institutional attitude — especially governmental institutions — and a commitment “ to the democratic, the individualistic, and the humanitarian ” (pp. 65 – 66). 24 The federal Developmental Disabilities Assistance and Bill of Rights Act of 1975 (PL 94-103) included a provision that

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CHAPTER 30 The Educational Environment 969

included the elements won in individual court cases across the nation and provided for a “ free and appropriate public education ” for all children with disabilities from ages 6 to 21 years (age 5 years if a state provided public education to children without disabilities at age 5 years). The major provisions of PL 94-142, still in place today, concern the concepts of zero reject, education in the least restrictive environment, right to due process, nondiscriminatory evalu-ation, individualized educational program, parent participa-tion, and the right to related services, which include physical therapy.

ZERO REJECT

All children, including children with severe or profound dis-abilities, are to receive an education. These children initially were to receive priority for service because they probably were not receiving appropriate service at that time.

LEAST RESTRICTIVE ENVIRONMENT

Public agencies are to ensure the following:

To the maximum extent appropriate, children with dis-abilities, including children in public or private institu-tions or other care facilities, are educated with children who are not disabled, and special classes, separate school-ing, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supple-mentary aids and services cannot be achieved satisfacto-rily. [PL 108-446, 118 Stat. 2677, § 612 (a)(5)(A).]

RIGHT TO DUE PROCESS

The law provides parents with numerous rights. Parents have the right to an impartial hearing, the right to be represented by counsel, and the right to a verbatim transcript of a hearing and written fi ndings. They can appeal and obtain an inde-pendent evaluation. Later, under PL 99-372, the Handi-capped Children ’ s Protection Act [1986, 20 USC § 1415(e)(4), (f)], parents would be able to get reimbursed for legal fees if they prevailed in a court case.

NONDISCRIMINATORY EVALUATION

Several court cases had noted the discriminatory nature of the testing and placement procedures used in many school systems. Nondiscriminatory tests were to be administered, and no one test could be the sole criterion on which place-ment was based. Nondiscriminatory testing is critical in the cognitive and language domain; however, physical therapists, too, should be careful to determine that their tests are not

states had to develop and incorporate a “ deinstitutionaliza-tion and institutional reform plan ” (p. 71). 14 Advocacy groups had gained power, and they used the judicial system to win their rights.

The Pennsylvania Association for Retarded Citizens (PARC) v. Commonwealth of Pennsylvania (1971) was the historic, decisive court case establishing the uncompromis-ing right to an education for all children with disabilities. This was a class-action suit on behalf of 14 specifi c children and all other children who were in a similar “ class ” to those with trainable mental retardation. In Pennsylvania, a child was excluded from public school if a psychologist or other mental health professional certifi ed that attendance at school was no longer benefi cial for that child. The local school board could refuse to accept or retain a child who had not reached the mental age of 5 years. Children classifi ed as trainable mentally retarded, therefore, were unable to receive a public education in Pennsylvania. The court sided with the children.

In PARC v. Commonwealth of Pennsylvania, the court found that all children between 6 and 21 years of age, regard-less of degree of disability, were to be given a “ free and appro-priate public education (FAPE). ” Children with disabilities were to be educated with children without disabilities in the least restrictive environment (LRE). The educational system was ordered to stop applying exclusionary laws, parents were to become involved in the child ’ s program, and re-evaluations were to be conducted. This landmark court case established many important principles that were later incorporated into the Education for All Handicapped Children Act. Simultane-ous with the PARC case, other important court cases were being decided. Mills v. Board of Education of the District of Columbia (1972) was fi led on behalf of all children excluded by public schools for a disability of any kind, including behavioral problems. The major result of this case was that all children, no matter how severe their mental retardation, behavioral problem, or disability, were educable and must be provided for suitably by the public school system. Related services, including physical therapy, were to be part of their educational program.

In Maryland Association for Retarded Citizens v. Maryland (1972), it was ruled that children have the right to tuition subsidies, the right to transportation, and the right to be educated with children who are not disabled. These cases and others across the nation began to establish the right of all children to a “ free and appropriate public education. ” It was in this climate that PL 94-142 was enacted.

PL 94-142: EDUCATION FOR ALL HANDICAPPED CHILDREN ACT

PROVISIONS

On November 29, 1975, the U.S. Congress passed PL 94-142, the Education for All Handicapped Children Act. The law

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(second number). In 1986, the reauthorization, PL 99-457, the Education of the Handicapped Act Amendments of 1986, was particularly critical because this act extended ser-vices to infants, toddlers, and preschoolers with disabilities and their families. Services to infants and toddlers, now covered under Part C of the law, are discussed in Chapter 29 . On October 7, 1991, PL 94-142 and PL 99-457 were reau-thorized and amended as PL 102-119, the Individuals with Disabilities Education Act Amendments of 1991 (IDEA). PL 105-17 was signed into law in June 1997, and PL 108-446, the Individuals with Disabilities Education Improvement Act of 2004, was signed on December 3, 2004. PL 108-446 was to be reauthorized in 2010, but this has been delayed. The reader is urged to check for information on the reau-thorization and any new rules and regulations. The key ele-ments of these reauthorizations, really a refi nement and reorganization of the previous amendments, are described in this section.

PART A: GENERAL PROVISIONS

Congress found that “ disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educa-tional results for children with disabilities is an essential element of our national policy of ensuring equality of oppor-tunity, full participation, independent living, and economic self-suffi ciency for individuals with disabilities ” [PL 108-446, 118 Stat. 2649, § 601(c)]. The recognition that education is not merely the three “ R ’ s, ” but that it is intended to prepare children for independent living and self-suffi ciency, is criti-cal for therapists. This expands what goals could be consid-ered “ educationally relevant. ” Also, principles of universal design, which are part of the Assistive Technology Act of 1998, have been added to IDEA 2004. These include the design of products that will be usable by all people, to the greatest extent possible, with minimal need for additional adaptations and accommodations. These elements strengthen the physical therapist ’ s role in providing access to the edu-cational environment and learning materials. 28

PART B: ASSISTANCE FOR EDUCATION OF ALL CHILDREN WITH DISABILITIES

Part B outlines the right to a free appropriate public educa-tion (FAPE) for all children ages 3 to 21 years. Children 3 to 5 and 18 to 21 years of age might not be served if inconsistent with state law. States are mandated to identify, locate, and evaluate all children with disabilities. Children eligible for special education and related services are those having one or more of the disabilities listed in Box 30-1 .

Children 3 to 5 years of age are to have IEPs, as are school-age children; however, the 1991 reauthorization, PL 102-119, allowed states the option of using individualized family service plans (IFSPs), required for infants and toddlers, for

biased. When possible, standardized tests that have norms for different racial and cultural groups should be used.

INDIVIDUALIZED EDUCATIONAL PROGRAM

Every child receiving special education must have an indi-vidualized educational program (IEP). This is the compre-hensive program outlining the specifi c special education, related services, and supports the child is to receive. It includes measurable annual goals. The IEP is developed annually at an IEP meeting.

PARENT PARTICIPATION

Active participation of parents is encouraged under PL 94-142. Parents are the individuals responsible for continuity of services for their child and should be the child ’ s best advocates. Parents are major decision makers in the develop-ment of the IEP: They must give permission for an evalua-tion, they can restrict the release of information, they have access to their child ’ s records, and they can request due process hearings.

RELATED SERVICES

Related services, such as transportation, speech pathology, audiology, psychologic services, physical therapy, occupa-tional therapy, recreation, and medical and counseling ser-vices, are to be provided “ as may be required to assist a child with a disability to benefi t from special education ” [PL 108-446, 118 Stat. 2657, § 602 (26); PL 94-142, 89 Stat. 775]. This quotation from the law has been interpreted in many differ-ent ways. Physical therapy “ to assist a child with a disability to benefi t from special education ” in some school systems is limited to only those activities that help the child write or sit properly in class. Other school systems more appropriately interpret the law to mean physical therapy that can help the child explore the environment, perform activities of daily living, improve function in school, prepare for vocational training, and improve physical fi tness to be better prepared to learn and participate in a full life after school.

PL 99-457: EDUCATION OF THE HANDICAPPED ACT AMENDMENTS OF 1986; PL 102-119: INDIVIDUALS WITH DISABILITIES EDUCATION ACT AMENDMENTS OF 1991; PL 105-17: INDIVIDUALS WITH DISABILITIES EDUCATION ACT AMENDMENTS OF 1997; PL 108-446: INDIVIDUALS WITH DISABILITIES EDUCATION IMPROVEMENT ACT OF 2004

Congress must reauthorize the law at set intervals. At each reauthorization, the number of the public law changes to indicate which Congress is reauthorizing the law (the fi rst number after PL) and which bill it is for that Congress

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Box 30-1 Federal Defi nitions of Children With Disabilities

“ (1) (i) Autism means a developmental disability signifi cantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child ’ s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.

(ii) Autism does not apply if a child ’ s educational performance is adversely affected primarily because the child has an emotional disturbance, …

(2) Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.

(3) Deafness means a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, with or without amplifi cation, that adversely affects a child ’ s educational performance.

(4) (i) Emotional disturbance means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child ’ s educational performance: (A) An inability to learn that cannot be explained by

intellectual, sensory, or health factors. (B) An inability to build or maintain satisfactory

interpersonal relationships with peers and teachers.

(C) Inappropriate types of behavior or feelings under normal circumstances.

(D) A general pervasive mood of unhappiness or depression.

(E) A tendency to develop physical symptoms or fears associated with personal or school problems.

(ii) Emotional disturbance includes schizophrenia. The term does not apply to children who are socially maladjusted, …

(5) Hearing impairment means an impairment in hearing, whether permanent or fl uctuating, that adversely affects a child ’ s educational performance but that is not included under the defi nition of deafness in this section.

(6) Mental retardation means signifi cantly subaverage general intellectual functioning, existing concurrently with defi cits in adaptive behavior and manifested during the developmental period, that adversely affects a child ’ s educational performance.

(7) Multiple disabilities means concomitant impairments (such as mental retardation-blindness or mental retardation-orthopedic impairment), the combination of which causes such severe educational needs that they cannot be

accommodated in special education programs solely for one of the impairments. Multiple disabilities does not include deaf-blindness.

(8) Orthopedic impairment means a severe orthopedic impairment that adversely affects a child ’ s educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by disease (e.g., poliomyelitis, bone tuberculosis), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).

(9) Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that — (i) Is due to chronic or acute health problems such as

asthma, attention defi cit disorder or attention defi cit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and

(ii) Adversely affects a child ’ s educational performance. (10) Specifi c learning disability — (i) General. Specifi c learning

disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. (ii) Disorders not included. Specifi c learning disability

does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

(11) Speech or language impairment means a communication disorder, such as stuttering, impaired articulation, a language impairment, or a voice impairment, that adversely affects a child ’ s educational performance.

(12) Traumatic brain injury means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child ’ s educational performance. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. Traumatic brain injury does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma.

Continued

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environment. “ The term ‘ assistive technology device ’ means any item, piece of equipment, or product system, whether acquired commercially off the shelf, modifi ed, or custom-ized, that is used to increase, maintain, or improve the func-tional capabilities of a child with a disability … ‘ assistive technology service ’ means any service that directly assists a child with a disability in the selection, acquisition, or use of an assistive technology device ” [PL 108-446, 118 Stat. 2652, § 602(1)].

Assistive technology services include evaluation, selec-tion, purchasing, and coordination with education and reha-bilitation plans and programs. This is an important area, as physical therapists frequently provide assistive devices to improve a child ’ s function and participation at school. Ther-apists adapt seating so children can function better and safely in the classroom. They assist other team members in devising the most functional communication systems, along with providing access to switching devices and computers. Physical therapists are generally the key related service pro-viders involved in the choice and maintenance of mobility devices, including walkers, crutches, canes, and manual and power wheelchairs. These mobility devices allow children with disabilities to access the school building and grounds and thereby participate in all aspects of their education program. The extent of assistive technology services and the purchasing of devices vary among school systems. For addi-tional information, see Chapter on Assistive Technology (Evolve site).

EARLY INTERVENING SERVICES AND RESPONSE TO INTERVENTION

Early intervening services (EIS) and response to intervention (RTI) are both new to IDEA 2004. EIS focuses on children from kindergarten to grade 3 who would benefi t from addi-tional academic services and behavioral support to succeed in the general education environment [34 cfr 300.226(a)][20 u.s.c. 1431(f)(1)]. RTI involves high-quality instruction/intervention, using the student ’ s learning rate and level of performance for decision making. Important educational decisions are based on the student ’ s response to instruction/intervention across multiple tiers. 10 RTI is an evaluation and

preschool-age children. The 2004 reauthorization also allows states the option to continue to provide early intervention services to children with disabilities until the child enters kindergarten or elementary school [PL 108-446, 118 Stat. 2746, § 632(5)(B)(ii)]. Many professionals believe the problems of preschoolers and their families are better served by the family-centered approach embodied in early intervention.


An ongoing area of national effort is the education of chil-dren with disabilities in the least restrictive environment (LRE). Children should be educated in their local schools to the maximum extent appropriate. The degree of inclusion in the local school and the general education classroom will vary based on what is appropriate for their needs and age. Children are not merely to be “ placed ” in general education, but they are to fully participate and have goals related to their academic and social advancement. Since 1990, a signifi cant reduction has occurred in the placement of children with disabilities in separate facilities and segregated classrooms, along with substantial increases in the amount of time they spend in regular classrooms. 123

TRANSITION

Transition planning was specifi cally addressed in IDEA 1997 because this important service was often neglected. Transi-tion planning and required services must be included in the IFSP and IEP. Consideration must be given to transition from early intervention to preschool, from preschool to school, at critical points during school, and especially from age 16 years to exit from school. Physical therapists and other related service personnel are to be involved in transition planning for post-school activities, as appropriate. Transi-tion to adulthood is presented in Chapter 32 .

ASSISTIVE TECHNOLOGY

Assistive technology devices and assistive technology services allow the child to fully benefi t from the educational

Box 30-1 Federal Defi nitions of Children With Disabilities—cont’d

(13) Visual impairment including blindness means an impairment in vision that, even with correction, adversely affects a child ’ s educational performance. The term includes both partial sight and blindness. ” (Authority: 20 U.S.C. 1401(3); 1401(30))

Developmental delay: “ The term child with a disability for a child aged 3 through 9 may, at the discretion of the State and local educational agency, include a

child … … experiencing developmental delays, as defi ned by the State and as measured by appropriate diagnostic instruments and procedures, in one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development, and who, for that reason, needs special education and related services ” [PL 105-17, 111 Stat. 43, Sec. 602 (3) (B)].

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speaking, breathing, learning, and working ” [34CFR104.3(j)(2)(ii)]. The recent Americans With Disabilities Amend-ments Act of 2008 (ADAAA) includes a “ conforming amend-ment ” to Section 504, which means that the expanded coverage of ADAAA also applies to Section 504. The ADAAA retains the defi nition of disability under Section 504 but emphasizes that the defi nition should be interpreted broadly. 124 The ADAAA “ directs that the ameliorating effects of mitigating measures (other than ordinary eyeglasses or contact lenses) not be considered in determining whether an individual has a disability; expands the scope of ‘ major life activities ’ by providing a non-exhaustive list of general activ-ities and a non-exhaustive list of major bodily functions; clarifi es that an impairment that is episodic or in remission is a disability if it would substantially limit a major life activ-ity when active. ” 124

Thus, it is possible that a child who does not require special education according to the accepted defi nitions of disabilities under IDEA, but who is a qualifi ed handicapped person, might be able to receive all the aids, services, and accommodations necessary to receive a free and appro-priate public education through Section 504. Nationally, only 1.2% of public school students are Section 504 students, with the greatest numbers in middle and high school having attention defi cit hyperactivity disorder. 59 The ADAAA now means that more students will qualify for support under Section 504. 67 Interpretation of Section 504 varies among states and even among individual school districts; in some districts, students with 504 plans may receive direct physical therapy services or consultation, but in other districts they may not.

PL 101-336: AMERICANS WITH DISABILITIES ACT

The Americans With Disabilities Act (ADA) (PL 101-336) was signed into law on July 26, 1990. It “ extends to individu-als with disabilities comprehensive civil rights protection similar to those provided to persons on the basis of race, sex, national origin, and religion under the Civil Rights Act of 1964 ” ( Federal Register, July 26, 1991, p. 3540). The regula-tions cover employment; public service, including public transportation, public accommodations, and telecommuni-cations; and miscellaneous provisions. Although the law is not specifi c in reference to issues related to children in school, the provisions of ADA assist students with disabili-ties. The law is especially applicable to day care centers and transition to employment. 97 Public buildings, including schools, must be accessible, and children should be able to use public transportation to get to school, work, and social activities. Children with disabilities should expect to use the skills learned at school in an accessible workplace. The ADA is also discussed in Chapter 32 , “ Transition to Adulthood for Youth With Disabilities. ”

intervention process used to monitor student progress and make data-based decisions about the need for and provision of instructional modifi cation, research-based intervention, and increasingly intensifi ed services for students having problems in school. The goal of RTI is to prevent the overi-dentifi cation of children for special education, especially those with potential learning disabilities. RTI is a departure from defi cit-based assessments and focuses on possible suc-cessful interventions rather than “ what is wrong ” with the student. It is a multi-tiered service-delivery model with dif-ferentiated instruction to meet the individual needs of all students, not just those with specifi c disabilities. 107

Response to intervention (RTI) holds many promises in that collaboration and teaming are required to support implementation. RTI is defi ned by high-quality instruction and provides a curriculum structure that can be imple-mented in an inclusive setting. 64 RTI allows therapists to participate with the team to meet a student ’ s needs prior to establishing eligibility for special education. Therapists may provide expertise in many areas such as in modifying class-rooms, suggesting learning strategies, and providing adap-tive equipment or any necessary intervention. The goals are to do what is required for the student to succeed in the cur-riculum with the fewest restrictions.

Questions often arise regarding RTI and the need for written parental approval to perform an evaluation, parental approval to provide services, and the extent of doc-umentation necessary for evaluation and intervention. Answers to those questions will depend on individual state physical therapy practice acts; however, it usually is best to receive written permission from parents for any form of evaluation and intervention. Documentation of interaction with a child is always an important element of ethical practice.

SECTION 504 OF THE REHABILITATION ACT Section 504 of the Rehabilitation Act of 1973 (PL 93-112) is a broad antidiscrimination statute designed to ensure that federal funding recipients — including schools — provide equal opportunity to people with disabilities (Discipline Under Section 504, 1996). It has been used to broaden a student ’ s eligibility for related services in school. Educational agencies that receive federal funds are not allowed to exclude qualifi ed individuals with disabilities from participation in any program offered by the agency. The defi nition of quali-fi ed handicapped person under Section 504 is broader than it is in IDEA. Under Section 504, qualifi ed “ handicapped person means any person who (i) has a physical or mental impair-ment which substantially limits one or more major life activ-ities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment ” [34CFR104.3(j)(1)]. “ Major life activities means functions such as caring for one ’ s self, performing manual tasks, walking, seeing, hearing,

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RELATED SERVICES

Tatro v. Texas (1980) was one of the early major cases involv-ing PL 94-142. Amber Tatro had spina bifi da and required clean intermittent catheterization several times during the school day. Her parents wanted assistance with catheteriza-tion at school. School offi cials refused, claiming that cathe-terization is a medical procedure, and Amber could not attend school unless her parents handled the procedure. The parents then initiated what turned out to be a 10-year legal battle. During the legal process, they were told that although catheterization was necessary to sustain Amber ’ s life, it was not necessary to benefi t from education; the school system, therefore, was not obligated to provide the service. After a complicated course through the court system, the case was heard by the U.S. Supreme Court. Amber attempted to attend the proceedings, only to discover that the building was not wheelchair accessible. The Supreme Court ruled that clean intermittent catheterization was a related service that enabled the child to benefi t from special education:

“ A service that enables a handicapped child to remain at school during the day is an important means of providing students with the meaningful access to education that Congress envisioned. The Act makes specifi c provision for services, like transportation, for example, that do no more than enable a child to be physically present in class ” (Tatro v. Texas, 1980, p. 891). 79

This case led to the “ bright-line ” physician-nonphysician rule that a school district is not required to provide services of a physician (other than for diagnostic and evaluation purposes) but must offer those of a nurse or qualifi ed lay-person. This case is important to physical therapists because the realm of related services was expanded, as was the meaning of “ required to benefi t from special education. ”

Court cases have also involved related services and chil-dren who are medically fragile and require extensive services of a nurse and others. Some states advocate the use of an extent/nature test, in which decision making focuses on the individual case and considers the complexity of and need for services. The U.S. Supreme Court in Cedar Rapids Com-munity School District v. Garret F. (Supreme Court of the United States, No. 96-1793, March 3, 1999) reaffi rmed that related services, in this case nursing services, were not excluded medical services under IDEA and must be provided in schools, irrespective of the intensity or complexity of the services. This decision supported the right to an education for children with complex health care needs.

BEST POSSIBLE EDUCATION

Rowley v. Board of Education of Hendrick Hudson Central School District (1982) involved Amy Rowley, who was deaf.

ELEMENTARY AND SECONDARY EDUCATION ACT

The Elementary and Secondary Education Act of 1965 (ESEA) was passed as part of the “ War on Poverty. ” ESEA emphasizes equal access to education of all children and encourages high standards and accountability. The law pro-vides federal funding for education programs that are administered by the states.

Congress amended and reauthorized ESEA as the No Child Left Behind Act of 2001 (NCLB) (PL 107-110). This federal legislation was to ensure that all children, including those with disabilities, receive a quality education. To achieve this goal, all children were to be tested and make “ adequate yearly progress. ” There has been considerable criticism of this legislation and more than 151 national organizations have formally expressed concerns regarding NCLB. “ Among these concerns are: over-emphasizing standardized testing, narrowing curriculum and instruction to focus on test prep-aration rather than richer academic learning; over-identifying schools in need of improvement; using sanctions that do not help improve schools; inappropriately excluding low-scoring children in order to boost test results; and inadequate funding. ” 91 In December 2003, new federal provisions were announced, in recognition of the failure of NCLB to prop-erly address the testing of children with disabilities and to meet annual yearly progress for closing the achievement gap. Under these new provisions, local school systems have greater fl exibility in meeting the requirements of NCLB. 44 Each state is now responsible for determining the defi nition of signifi cant cognitive disabilities. To assist with the demands of NCLB, physical therapists working in school systems should make certain that children are properly positioned and have appropriate writing implements or computer access for testing situations. ESEA is being reviewed for reau-thorization and the reader should seek information on how the reauthorized law might impact physical therapy service delivery.

CASE LAW A law as comprehensive and complex as IDEA was bound to lead to some controversy. All possible situations could not be anticipated, and some issues were expected to be resolved by the courts. Disagreements that have led to due process hearings involving physical therapy have generally focused on (1) adequacy of physical therapy services; (2) qualifi ca-tions and training of personnel; (3) need for services over the summer or during school breaks; (4) compensatory physical therapy; and (5) types of intervention provided. 66 As a result of due process disagreements, a number of sig-nifi cant state and federal court cases have helped defi ne the scope of the law. Those of interest to physical therapists include cases involving related services, best possible educa-tion, extended school year (ESY), and LRE.

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sought to extend the school year. In Pennsylvania, it was found that the state ’ s policy of defi ning a school year as 180 days could not be used to prevent the provision of an extended school year. In Georgia, the court ruled that an extended school year must be based on individual cases. The child must show signifi cant regression following school breaks, the extended year must be part of the IEP, and an extended year does not mean 5 days a week for 52 weeks but must be based on a program to attain goals.

Eligibility for extended school year (ESY) services is now based on several criteria. These include “ individual need, nature and severity of the disability, educational benefi t, regression and recoupment, self-suffi ciency and indepen-dence, and failing to meet short-term goals and objectives ” (p.16). 106 The possibility of receiving services for the entire year has many implications for physical therapy. The chil-dren most likely to require ESY services are usually those with the most severe disabilities, often requiring physical therapy. Some children may be deemed eligible for ESY aca-demic services and may not need ESY physical therapy ser-vices. One criterion used to qualify for ESY services is documentation of regression during vacations and the length of time it takes to recoup or relearn skills. It is there-fore vital for physical therapists to do an examination and evaluation before and after school breaks. Documentation of regression, especially during short breaks, might enable a child to receive physical therapy over the summer. Using the child ’ s status at the end of the summer as the basis for ESY physical therapy services might be confounded, however, if parents obtain private physical therapy during the summer and regression is prevented.

An ethical dilemma can arise for some physical therapists over the ESY issue. Some school therapists provide private physical therapy during the summer and might prefer that the school system not provide the service. Others might not want the obligation of having to provide services during the summer, either through the school or privately. Therapists must be careful to recognize these potential confl icts of interest.


The issue of LRE, also referred to as inclusion, has generated much discussion over the years; it has also generated many due process hearings and lawsuits. Outcomes have been mixed. During the early 1990 ’ s, the party seeking inclusion, usually the parent, prevailed in a series of court cases, the most noted being Oberti (3d Cir. 1993) and Daniel R.R. (5th Cir. 1989). 133 Later cases ruled against inclusive, general edu-cation placements as the LRE for students who were past elementary school age and had severe disabilities. 117 A ratio-nal approach must prevail in issues regarding inclusion. As discussed later in the chapter, options must exist for loca-tions and types of services available to the child that can and should change over time.

She had a special tutor, her teachers were trained in basic sign language, and she was provided with a sound amplifi er. After experimenting with a sign language interpreter in a general education class, the school system decided she did not need the service. Her parents believed she needed the interpreter and went through due process to continue interpreter services. A district court held that Amy was not receiving a free and appropriate public education because she did not have “ an opportunity to achieve her full potential commensurate with the opportunity provided to other children. ” The school district appealed, and the case eventually went to the U.S. Supreme Court. The 1982 Supreme Court decision held that Congress did not intend to give children with disabilities the right to the best possible education (i.e., education that would “ maximize their poten-tial ” ). It rejected the standard used by the lower courts that children with disabilities are entitled to an educational opportunity “ commensurate with the education available to nonhandicapped children. ” The decision set two standards: (1) A state is required to provide meaningful access to educa-tion for each child with a disability, and (2) suffi cient sup-portive and related services must be provided to permit the child to benefi t educationally from special education instruction.

When the Supreme Court applied these standards in Rowley, it found that Amy did not need interpreter services because she was making “ exemplary progress in the regular education system ” with the help of the extensive special ser-vices. The Supreme Court was careful to point out that merely passing from grade to grade does not mean a child ’ s education is appropriate.

The Rowley decision has had a major impact on the pro-vision of related services, including physical therapy. Unfor-tunately, in some school systems it has been used to limit the amount of physical therapy provided on the premise that schools are not obligated to provide the “ best services. ” Ther-apists should recognize that “ exemplary progress ” may be a reason to terminate services unless an educational need for physical therapy can be substantiated.

EXTENDED SCHOOL YEAR

As children with special needs began to benefi t from 9-month educational programs, some parents realized that their chil-dren ’ s skills were regressing during the summer and that it took several months to regain those skills when the children returned to school in the fall. Because the U.S. Congress had realized that more than the traditional 12 years of schooling might be necessary for children with disabilities to reach their potential, perhaps it could be inferred that if a child regressed during the summer, extended school year services might be necessary. 79

Several court cases addressed this issue. In both Battle v. Commonwealth of Pennsylvania (1981) and Georgia Asso-ciation of Retarded Citizens v. McDaniel (1981), parents

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may know little about children with disabilities and the role of the physical therapist in educational settings. This pres-ents a challenging and potentially rewarding opportunity for therapists to share their knowledge about the disabilities of their students, and their associated activity limitations, par-ticipation restrictions, and environmental factors, along with their impairments in body functions and structures. Interac-tion with other physical therapists is often limited when only a few children receive physical therapy services at each school. Therapists might also need to travel long distances to see a single child, and scheduling services and times to meet with teachers can be diffi cult. The reader is encouraged to examine other references for a more in-depth discussion of positive outcomes and aspects of inclusion. 19,21,52,81,103,110

MODELS OF TEAM INTERACTION

There has been an evolution in the models of team interac-tion over the past several decades. The hierarchy of team interaction is presented in Box 30-2 . A unidisciplinary model

EDUCATIONAL MILIEU

Although for many years physical therapists have served chil-dren with disabilities in the general education setting, edu-cational administrators and teachers vary in their perceptions of the role of physical therapy. Similarly, physical therapists have different perspectives of their role in the educational milieu. Hence, open communication and collaboration are essential. Physical therapists must take the time to develop relationships with administrators, teachers, and staff, and they need to understand the written and unwritten rules of the educational environment, to create an effective working environment.


Education of all children in the LRE, no matter how severe their disabilities, is the intent of the federal laws and is con-sidered “ best practice ” (PL 105-17; PL 108-446). 87,120 The conceptual framework for education in the LRE started in the 1960 ’ s. Reynolds 108 advocated a continuum of placement options from most restrictive to least restrictive. Deno 30 named this the cascade of educational placements . The cascade of environments, from most to least restrictive, includes the residential setting, homebound services, special schools, special classes in neighborhood schools, general classes with resource assistance in neighborhood schools, and general classes in the neighborhood school without resource assis-tance. Taylor, 120 a long-time advocate for total integration of people with severe disabilities, proposed that the focus must change from expecting individuals to fi t into existing pro-grams to providing services and supports necessary for full participation in community life. Terminology used to describe LRE has evolved from mainstreaming , to integrated , to inclusive . The differences in terms are more than merely a change in language.

Inclusive education at its best involves the whole school where children with disabilities are served in the general education environment with the required “ supplementary aids and services. ” 77 Models for meeting a student ’ s needs in an inclusive setting include (a) general education and special education teachers co-teaching during all or part of the cur-riculum; (b) indirect, consultative support from the special education teacher; (c) material adaptation by the special education teacher; (d) including the special education teacher as a member of the team serving the child, usually in middle and high school; and (e) a school-wide approach whereby the entire staff takes responsibility for all students. 77 Physical therapists who work in systems using any of these models need to develop collaborative working relationships with all appropriate personnel for maximum communica-tion and team effectiveness, and optimal child outcomes.

Compliance with LRE requirements is occurring to varying degrees across the nation. Therapists must be pre-pared to work with administrators, teachers, and staff who

Box 30-2 Models of Team Interaction

Unidisciplinary: Professional works independently of all others.

Intradisciplinary: Members of the same profession work together without signifi cant communication with members of other professions.

Multidisciplinary: Discipline-specifi c roles are well-defi ned and professionals work independently but recognize and value the contributions of other disciplines. “ Little or no interaction or ongoing communication occurs among professionals ” (p. 225). 122 However, the Rules and Regulations ( Federal Register, June 22, 1989, p. 26313) for PL 99-457 redefi ne multidisciplinary to mean “ the involvement of two or more disciplines or professions in the provision of integrated and coordinated services, including evaluation and assessment. ”

Interdisciplinary: Discipline-specifi c roles are well-defi ned; however, individuals from different disciplines work together cooperatively on planning, implementation, and evaluation of services. Emphasis is on teamwork. Role defi nitions are relaxed.

Transdisciplinary: Professionals are committed “ to teaching, learning and working with others across traditional disciplinary boundaries ” (p. 13). 102 Role release occurs when a team member assumes the responsibilities of other disciplines for service delivery.

Collaborative: The team interaction of the transdisciplinary model is combined with the integrated service-delivery model. Services are provided by professionals across disciplinary boundaries as part of the natural routine of the school and community.

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teams are of vital importance when working with children with multiple disabilities or with those who are severely or profoundly disabled.

When joining a team, physical therapists should ask for clarifi cation regarding models or expectations of team inter-action. All individuals should have the same understanding to avoid miscommunication and confl ict.

MODELS OF SERVICE DELIVERY

Service-delivery models are frameworks that describe the format in which intervention is provided. 72 Common models include direct, integrated, consultative, monitoring, collab-orative, and relational goal-oriented models. In their nation-wide survey of school-based physical therapists, Kaminker and colleagues 68 found that therapists reported providing services most often through a combination of these models ( Table 30-1 ).

Direct Model In the direct model, the therapist is the primary service pro-vider for the child. This is the most common model of physi-cal therapy service delivery across practice settings. Direct intervention is provided when there is emphasis on acquisi-tion of motor skills and when therapeutic techniques cannot be safely delegated. It may take place in the context of the student ’ s natural environment or, if necessary, in an isolated “ pull-out ” setting; in either case, ongoing consultation with parents, teachers, and other team members is essential. 55 A child may receive direct intervention for one goal, while other models of service delivery are used to achieve other goals. A combination of several models of service delivery is consistent with the integrated and collaborative service-delivery models.

Integrated Model The Iowa State Department of Education 63 defi nes the inte-grated model as one in which (1) the therapist interacts not only with the child but also with the teacher, aide, and family; (2) services are provided in the learning environment; and (3) several people are involved in implementation of the therapy program. Team collaboration is a key feature of the model. The integrated model frequently includes direct and consultative physical therapy services. Goals and objectives should be developed collaboratively, and all individuals serving the child should be instructed on how to incorporate objectives into the child ’ s education program. Direct ser-vices, if appropriate, are provided in the least restrictive envi-ronment. Only when it is in the best interests of the child should the intervention be provided in a restrictive environ-ment, such as a special room, because skills learned in one setting do not necessarily generalize to other settings. 15 Common examples of when therapy might be acceptable in a more restrictive environment are when the child is partici-pating in academic courses, when extensive equipment is

is not a team model and should rarely, if ever, be used in school settings. The multidisciplinary model involves several professionals conducting independent evaluations and then meeting to discuss their evaluations and determine goals, objectives, and a plan of action. The meaning of multidisci-plinary has changed since 1986 because of its usage in PL 99-457. In the law, the term multidisciplinary is used to describe an interdisciplinary model, causing frequent confusion.

The defi nition and application of the transdisciplinary model are also ambiguous. For some, the continuous sharing of information across disciplines is suffi cient for a transdis-ciplinary model. For others, there must be complete role release, which involves not just the sharing of information but also the sharing of performance competencies. Team members teach each other interventions so that all can provide greater consistency and frequency in meeting the child ’ s needs. Occasionally in a transdisciplinary model, only one individual provides the intervention, thereby increasing consistency and allowing rapport to be established with the child and family.

As the team process has developed, several authors have advocated use of the terms that describe the dynamics of team interaction and may include a combination of models based on the specifi c needs of educators, therapists, children, and families. 57,61,104,115 The defi ning characteristics of collab-orative teamwork, as conceptualized by Rainforth and York-Barr, 104 are summarized in Box 30-3 . Advantages of the collaborative model are derived from the diverse perspec-tives, skills, and knowledge available among individuals on the educational team. This combined talent is an enormous resource for problem solving and support. Collaborative

Box 30-3 Characteristics of Collaborative Teamwork

• Equal participation in the team process by family members and service providers

• Consensus decision making in determining priorities for goals and objectives

• Consensus decision making about the type and amount of intervention

• All skills, including motor and communication skills, are embedded throughout the intervention program.

• Infusion of knowledge and skills from different disciplines into the design and application of intervention

• Role release to enable team members to develop the confi dence and competence necessary to facilitate the child ’ s learning

Adapted from Rainforth, B., & York-Barr, J. (1997). Collaborative teams for students with severe disabilities (2nd ed.). Baltimore: Paul H. Brookes.

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978

SECTIO

N V

Special Settings and Special Considerations

Adapted from Iowa guidelines for educationally related physical services. (1996). Des Moines, IA: Department of Education.

TABLE 30-1 Physical Therapy Service-Delivery Models in Educational Settings

Direct Integrated Consultative Monitoring CollaborativeRelational Goal-Oriented 72

Therapist ’ s primary contact

Student Student, teacher, parent, aide

Teacher, parent, aide, student

Student Entire team, student Entire team, student

Environment for service delivery

Distraction-free environment (may need to be separate from learning environment) Specialized equipment needed

Learning environment and other natural settings Therapy area if necessary for a specifi c child

Learning environment and other natural settings

Learning environment Therapy area if necessary for a specifi c child



Methods of intervention

Educationally related functional activities Specifi c therapeutic techniques that cannot safely be delegated Emphasis on acquisition of new motor skills

Educationally related functional activities Positioning Emphasis on practice of newly acquired motor skills in the daily routine

Educationally related activities Positioning Adaptive materials Emphasis on adapting to learning environment and generalization of acquired skills

Emphasis on ensuring that child maintains status to benefi t from special education

Educationally related activities

Emphasis on overarching goals and desired outcomes that require relationship skills

Amount of actual service times

Regularly scheduled sessions, generally at least weekly

Routinely scheduled Flexible amount of time depending on needs of staff or pupil

Intermittent or as needed, depending on needs of staff or pupil

Intermittent, depending on needs of pupil, may be as infrequent as once in 6 months

Ongoing intervention Discipline-referenced knowledge shared among team members, so relevant activities occur throughout the day

Customized

Implementer of activities

PT, PTA PT, PTA, teacher, parent, aide, OT, OTA

Teacher, parent, aide PT Team Team

Individualized education plan objectives

Specifi c to therapy programs as related to educational needs

Specifi c to educational program

Specifi c to educational program

Specifi c to being able to maintain educational program

Organized around life domains in an ecologic curriculum

Short-term to have positive child experience; mid-term to reduce impairment, optimize function, and enhance participation; long-term to optimize adaptation and adjustment

OTA, Occupational therapist assistant; OT, occupational therapist; PT, physical therapist; and PTA, physical therapist assistant.

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models, although not everyone would consider it a model of service delivery. 57 However, because collaboration is fre-quently defi ned as a combination of transdisciplinary team interaction and an integrated service-delivery model, it is discussed here as part of service delivery. 104 As noted in Box 30-3 and Table 30-1 , services in a collaborative model are provided by all team members, as in an integrated model, but the degree of role release and crossing of disciplinary boundaries is greater. The team assumes responsibility for developing a consensus on the goals and objectives, as well as on implementation of program activities, which are edu-cationally relevant and are conducted in the natural routine of the school and community. In the collaborative model, theoretically, the amount of time the child practices an activ-ity should be greater than in other models because the entire team participates in the program. In reality, this might not be the case because of the varied ability levels of team members, insuffi cient natural opportunities to practice skills, competing priorities in the student ’ s schedule, and the student ’ s diffi culty in performing some activities. Research by Hunt and associates 61 suggests that for students with severe disabilities, collaborative teaming results in increased academic skills, engagement in classroom activities, interac-tions with peers, and student-initiated interactions. The researchers indicated that parents played a critical role in the development and implementation of the programs, and fl exibility was key to the practicality and applicability of suggestions.

In the past, many believed that state physical therapy practice acts prohibited other school personnel from per-forming procedures that are within the scope of physical therapy practice. Generally, this is not the case as long as the individual does not represent himself or herself as a physical therapist, does not bill for physical therapy, and does not perform a physical therapy evaluation. 101 In fact, a study by Rainforth 101 indicates few limitations on the delegation of procedures by others, especially of the nature likely to occur in an educational environment. Team members do not really perform physical therapy, but rather carry out activities that are recommended to assist the child to learn and practice motor skills in multiple environments. 84

Relational Goal-Oriented Model The Relational Goal-Oriented Model (RGM) of service delivery to children was developed by King 72 and builds on the framework of the Life Needs Model of Pediatric Service Delivery. 74 The Life Needs Model addresses the “ why ” and “ what ” of service delivery, while the RGM focuses on the “ how ” of service delivery and incorporates relationship-based practice with goal orientation. The model consists of six elements: (1) overarching goals; (2) desired outcomes; (3) fundamental needs; (4) relational processes; (5) approaches, world-views, and priorities; and (6) strategies. These ele-ments are applied to client-practitioner and practitioner-organization relationships.

required, when the child is highly distractible, or when it is necessary for the child ’ s safety.

Consultative Model In the consultative model, the therapist interacts in the learning environment with appropriate members of the edu-cational team, including the parents, who then implement the recommended activities. The physical therapist provides instruction and demonstration without direct intervention. Responsibility for the outcome lies with the individuals receiving the consultation. 34

Hanft and Place 55 noted that consultation in the school may be included in several service-delivery models. Con-sultation may be provided for a specifi c child, as outlined in Table 30-1 , but it might also include programmatic consultation with the education staff involving issues related to safety, transportation, architectural barriers, equipment, documentation, continuing education, and improvement of program quality. 76 Programmatic consul-tation should be the major activity of the therapist at the beginning of each academic year and may often be more important than child-specifi c goals and objectives. Once the environment is safe, the child is properly positioned throughout the day, and a safe means of mobility is determined, goals pertaining to skill development can be addressed.

Monitoring Model In the monitoring model, the physical therapist shares infor-mation and provides instruction to team members, main-tains regular contact with the child to check on status, and assumes responsibility for the outcome of the intervention. Similar to the consultative model, the therapist does not provide direct intervention. Monitoring is important for follow-up of children who have impairments, activity limita-tions, or participation restrictions that might become more pronounced over time. It allows the therapist to check adap-tive equipment and assistive devices. Monitoring may be an important way to determine whether a child is progressing as necessary for transition to the next level of educational or vocational services. It is useful for transition from direct or integrated services to no services, and it provides the family, child, and therapist a sense of security that the child is being observed. If the need for direct services is identifi ed, initia-tion of services is facilitated because physical therapy is already listed on the IEP.

Collaborative Model “ School-based collaboration is an interactive team process that focuses student, family, education and related service partners on enhancing the academic achievement and func-tional performance of all students in school ” (p. 3). 57 It focuses on team operations and management and how to seamlessly interact with team members to select and blend services. Collaboration should be part of all service-delivery

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assistance from staff other than the occupational therapist and/or physical therapist?

• Have previous attempts to alleviate the concerns been suc-cessful and documented?

• What is the potential for positive or negative change with/without occupational therapy and/or physical therapy services?

• Will the student ’ s educational environment become more restrictive if occupational therapy and/or physical therapy services are not provided? (p. 34) 70 If a child is not eligible for special education, he or she

may be eligible for related services under Section 504 of the Rehabilitation Act. The need for related services must be based on the individual needs of the child. Some school districts have attempted to develop generalized exclusionary criteria such as performance discrepancy criteria, also called cognitive referencing . Performance discrepancy criteria limit services to children whose cognitive development is below their motor development (p. 506). 18 This assumes a positive correlation between the development of cognition and motor skills. Under this interpretation, the child most appro-priate for physical therapy has normal intellectual skills but a delay in motor skills. Children whose cognitive and motor skills are similar would not be eligible for services. Aside from the legal 100 and ethical questions, research does not support cognitive referencing. 9,22

EVALUATION

Results of the evaluation are used to make decisions about the need for school-based physical therapy services, IEP goals, frequency and duration of services, and ESY services. The elements of patient/client management in the Guide to Physical Therapist Practice 2 differ somewhat from those of federal education laws. In the school setting, evaluations are conducted to “ assist in determining whether the child is a child with a disability ” [PL 108-446, 118 Stat. 27045, § 614(b)(2)]; they are also used to determine the educational needs of the child. The process of evaluation, therefore, is compa-rable with examination and evaluation in the Guide .

A comprehensive team evaluation should be conducted “ at least every 3 years, unless the parent and the local edu-cational agency agree that a re-evaluation is unnecessary ” [PL 108-446, 118 Stat. 2704, § 614 (a)(2)]. It may be per-formed no more often than once a year, unless both parent and educational agency agree to more frequent evaluations. Physical therapy evaluation may need to be done more fre-quently according to the requirements of individual state practice acts and best practice guidelines. All therapists should be familiar with their state ’ s requirements.

Physical therapy evaluation in the educational environ-ment should be consistent with the framework of the World Health Organization ’ s International Classifi cation of Func-tioning, Disability and Health (ICF), which focuses on both enablement and disablement. 111,131 Although the 2001 edition

PROGRAM DEVELOPMENT

ELIGIBILITY FOR PHYSICAL THERAPY

As was noted previously, for school-age children, a motor delay or disability does not necessarily qualify a student for special education and related services. The child must have an educational need for special education in one of the cat-egories listed in Box 30-1 . Once a child meets the criteria for special education in one of these categories, the related service needs are determined as “ required to assist a child with a disability to benefi t from special education ” [PL 108-446, 118 Stat. 2657, § 602 (26)]. Within the requirements of federal law, state and local regulations may include addi-tional elements related to eligibility.

Many states have developed lengthy guidelines for school practice that can assist therapists in their decisions regarding both a student ’ s need for physical therapy and service delivery. These guidelines generally can be found on the website of the state ’ s Department of Education, the state ’ s Physical Therapy Association, or both. For example, the document developed in Maryland ( Occupational and Physical Therapy Early Intervention and School-Based Services in Maryland: A Guide to Practice ), published in December 2008, describes the process for determining the need for school-based occupational and physical therapy services as follows:

“ Once the IEP team agrees on the present levels of the student ’ s performance and IEP goals/objectives, the team then determines whether the unique expertise of an OT or PT is required for the student to be able to access, participate, and progress in the learning environment in preparation for success in his/her postsecondary life. Based on the individual needs of the student, the PLs [present levels], goals and objectives, the IEP team with recommendations from the OT or PT team member(s) determines necessary related services ” (p. 28). 80

The 2006 Kentucky guidelines ( Resource Manual for Educationally Related Occupational Therapy and Physical Therapy in Kentucky Public Schools ) remind therapists to ask a fundamental question: “ Is an occupational therapist ’ s or a physical therapist ’ s knowledge and expertise a necessary component of the student ’ s educational program in order for him/her to achieve identifi ed outcomes? ” (p. 2). 70 Further key questions regarding service determination listed in the Kentucky guidelines include the following: • Does the challenge signifi cantly interfere with the stu-

dent ’ s ability to access the general education curriculum and prepare for employment and independent living?

• Does the challenge in an identifi ed area appear to be caused by limitations in a motor or sensory area?

• Will the student receive appropriate modifi cations and accommodations and make progress on the IEP goals with

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Coster and co-workers, 23 is a standardized measure of par-ticipation in all aspects of the educational program for stu-dents in kindergarten through sixth grade. Findings may be used to identify IEP goals and develop the intervention plan, including frequency and duration of services. The SFA mea-sures skills that promote participation in the natural envi-ronmental settings of regular or special education, addressing both individual and contextual factors. It is a judgment-based, criterion-referenced measure that is both discrimina-tive (identifi es functional limitations) and evaluative (measures change over time). It assesses the student ’ s levels of activity, required support, and performance in daily school routines; by contrast, other standardized assessments measure the student ’ s capacity (optimal abilities under controlled conditions). Function is defi ned by the outcome of performance, not by the methods used. The SFA com-prises three major categories of student performance — Participation, Task Supports, and Activity Performance — and includes 21 domains (12 physical tasks and 9 cognitive/behavioral tasks), including the required level of assistance and adaptations. Criterion cut-off scores are provided for children in grades K through 3 and grades 4 through 6, as are item maps that provide a visual (graphic) representation of scores. The SFA can be completed by all members of the school team who are familiar with the student ’ s levels of activity and performance in school-related tasks and envi-ronments. It has high internal consistency (ranging from .92 to .98), high test-retest reliability (Pearson r ranging from .80 to .99, and intraclass coeffi cients[ICC] ranging from .80 to .99); it is a valid instrument for use in school settings. 62

For the student presented in the accompanying case study, the fi ve mobility domains of the SFA were completed col-laboratively by the school physical therapist and the class-room teacher, both of whom are well acquainted with the student and her levels of performance. That process took about 30 minutes. Although the test is intended to be con-ducted in its entirety by staff members representing several disciplines, other staff members chose not to do so; it is not uncommon for some to be reluctant to participate in the full assessment, claiming that it is too time-consuming. Perhaps, in time, the school physical therapist may be successful in persuading other members of the team to appreciate the value of information derived through the SFA.

Another assessment developed specifi cally for the educa-tion setting is the School Outcomes Measure (SOM). 6 The SOM is a minimal data set designed to measure outcomes of students who receive school-based occupational therapy and physical therapy. 6 The SOM includes 30 functional status items that cover fi ve general student ability areas tradition-ally addressed in school-based practice: self-care, mobility, assuming a student ’ s role, expressing learning, and behavior. Data are recorded on student and therapist demographics, as are details on information from the student ’ s IEP, therapy services provided, and therapeutic procedures used. 6 The SOM focuses on the measure of student functional status to

of the Guide incorporates the Nagi disablement model (pathophysiology, impairment, functional limitations, dis-abilities), 2 the edition that is under revision at the time of this writing will be based on the ICF model. 4 Evaluation should describe the student ’ s participation (engagement in life situations), activities (tasks), and body functions (physi-ology) and structures (anatomy), with consideration of per-sonal and environmental factors. These elements are reported from the perspective of access, participation, and progress in the educational program. Although the emphasis is on enablement, rather than disablement, the evaluation should incorporate participation restrictions (with required adapta-tions and assistance), activity limitations, and impairments in body functions and structures. 84 Evaluation should also make the distinction between capacity (what the student can do in controlled conditions) and performance (what the student actually does in the natural settings of daily life). Intervention strategies to reduce impairments of body func-tions and structures may be necessary to meet the student ’ s educational needs. Examination should also include a review of body systems from the perspective of school function: musculoskeletal, neuromuscular, cardiopulmonary, and integumentary.

IDEA 2004 mandates that goals and interventions be based on academic demands and functional performance within the educational setting. However, many of the assess-ments currently used by occupational and physical therapists in school-based settings to create these goals and objectives focus on developmental skills as compared with those of same-age and/or same-grade peers. 29 These developmental assessments provide little information about the student ’ s ability to participate in school-related tasks and refl ect a confl ict with the principles of IDEA 2004. 29 In addition, these measures do not provide information about perfor-mance in context and therefore are not appropriate outcome measures. Based on a model of inclusion for students with disabilities, assessments used in the educational setting should instead focus on participation and functional perfor-mance. They should identify to what extent the student requires assistance from an individual, accommodations, and/or modifi cation of the environment to participate in the educational process.

Tests and measures should be technically sound and should be administered by trained and knowledgeable per-sonnel, in accordance with instructions and in the child ’ s native language without racial or cultural bias [PL 108-446, 118 Stat. 2705, § 614(b)(3)]. Selection of standardized tests should be based on professional judgment and dictated by the characteristics of the individual child. Therapists should collaborate with school personnel to identify appropriate tests and measures that gather relevant functional and devel-opmental information. The child ’ s abilities should be assessed in the natural environment when possible: in the classroom, hallway, playground, stairs, and other school set-tings. The School Function Assessment (SFA), developed by

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involving the child ’ s parents; at least one regular educator (if the child is or will be participating in the regular education environment); not less than one special education teacher; a representative of the local educational agency who is quali-fi ed to provide or supervise specially designed instruction and is knowledgeable about the general education curricu-lum and resources; an individual who can interpret the instructional implications of the evaluation; and “ at the dis-cretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate; and whenever appropriate, the child ” [PL 108-446, 118 Stat. 2709, § 614(d)(1)(B)]. The physical therapist has a profes-sional obligation to participate when decisions regarding physical therapy are being made. The physical therapy con-tribution to the IEP must relate to the educational needs of the child. Individualized measurable annual academic and functional goals are developed at the IEP meeting. Short-term objectives are no longer required under IDEA 2004, except for those children who take alternate assessments; however, they are essential under “ best practice ” guidelines, and many school districts continue to expect them. Even if the educational system does not require them, therapists should still develop short-term objectives to monitor and report intervention outcomes as required for the plan of care. Physical therapists must adhere to their state physical therapy practice acts, which may demand more documenta-tion than the educational system requires, including a detailed plan of care. Table 30-2 describes the different ele-ments of outcomes measures.

Attendance at IEP meetings may not be mandatory for all members of the team “ if the parent of a child with a disability and the local educational agency agree that the attendance of such a member is not necessary because the member ’ s area of curriculum or related services is not being modifi ed or discussed … . … A member of the IEP team may be excused … … if the parent and the local educational agency consent to the excusal; and the member submits, in writing

enhance participation in the natural environments of school, home, and community. It allows teachers, parents, and others with knowledge of the student to provide information for any areas for which the therapist is not certain of the stu-dent ’ s abilities.

Research supports content validity, interrater reliability, 85 and test-retest reliability of the SOM for students who receive occupational and physical therapy. 6 The minimal data set was more responsive to children with mild/moderate func-tional limitations but less responsive to changes in children with severe disabilities. Arnold and McEwen 6 reported that use of the SOM is suitable on an annual basis in conjunction with IEP goals to evaluate outcomes for students, and that it is an appropriate tool for use in research to address outcomes.

The SOM provides several advantages to the school-based therapist. The tool takes about 10 to 15 minutes to admin-ister once a therapist is familiar with the student; this is clearly an asset for therapists attempting to balance caseload and essential evaluation/outcome data. Another asset is that the SOM requires no manipulatives or supplies — only the test form.

The Pediatric Evaluation of Disability Inventory (PEDI) 54 is a judgment-based, criterion-referenced measure that pre-ceded the SFA, is sometimes used in schools, and provides a more global assessment of self-care, mobility, social func-tion, and the need for caregiver assistance. Other standard-ized tests and measures, as discussed throughout this text, may assist in determining the level of a child ’ s physical functioning.

INDIVIDUALIZED EDUCATIONAL PROGRAM

The IEP is the document that guides the program of special education and related services for the school-age child, 5 to 21 years of age. It is also the document used in most states for the educational program of children ages 3 to 5 years attending preschool. The IEP is developed at a meeting

TABLE 30-2 Elements of Outcome Measures

Measure Part of IEP Measurable Time Frame Dimension Discipline Specifi c

Annual goal Yes Yes School year Activity/participation NoLong-term objective Yes Yes School year Activity/participation NoShort-term Not required by federal

law except for students who take alternate assessments *

Yes Months, a grading period

Body functions and structures Activity/participation

Varies, some objectives might be within the domain of one discipline

Benchmark Yes, but not always Yes School year or months Activity/participation No, although objectives might be within the domain of one discipline

* Might be required by local school system or state physical therapist practice act as part of plan of care.

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(VI) (aa) a statement of any individual accommodations that are necessary to measure the academic achieve-ment and functional performance of the child on State and district wide assessments; … … (bb) if the IEP Team determines that the child shall

take an alternate assessment … … a statement of why the child cannot participate in the regular assessment … …

(VII) the projected date for the beginning of services and modifi cations … … and the anticipated frequency, location, and duration of those services and modifi -cations; and

(VIII) beginning not later than the fi rst IEP to be in effect when the child is 16, and updated annually thereafter — (aa) appropriate measurable postsecondary goals

based upon age appropriate transition assess-ments related to training, education, employ-ment, and, where appropriate, independent living skills;

(bb) transition services (including courses of study) needed to assist the child in reaching these goals; and

(cc) beginning not later than 1 year before the age of majority under State law, a statement that the child has been informed of the child ’ s rights under this title ” [PL 108-446, 118 Stat. 2707-2709, § 614(d)(1)(A)].

The IEP is a written commitment by the educational agency of the resources that will be provided to enable a child with a disability to receive necessary special education and related services. The IEP also serves as a management, com-pliance, and monitoring tool and is used to evaluate a child ’ s progress toward achievement of goals and objectives. IDEA does not require that teachers or other school personnel be held accountable if a child with a disability does not achieve the goals set forth in the IEP; however, calls for greater accountability are increasing.

In the past, the IEP could not be changed without initiat-ing another IEP meeting; however, in IDEA 2004 there are provisions for making changes. The parent “ and the local educational agency may agree not to convene an IEP meeting for the purposes of making such changes, and instead may develop a written document to amend or modify the child ’ s current IEP ” [PL 108-446, 118 Stat. 2712, § 614(d)(3)(D)]. This change could result in problems for both the child and service providers. For example, therapy services might be added or deleted without input from the therapist. Ongoing team communication and collaboration are essential to ensure that fl exibility in modifying the IEP results in positive outcomes.

DEVELOPING GOALS AND OBJECTIVES

The physical therapist, as part of the collaborative team, assists in developing appropriate measurable annual goals,

to the parent and the IEP team, input into the development of the IEP prior to the meeting ” [PL 108-460, 118 Stat. 2710, § 614(d)(1)(C)]. Therapists who are providing services for a child are now required to either attend the IEP meeting or receive approval not to attend and then submit their recom-mendations in writing. This new requirement of written input might encourage greater participation by therapists at IEP meetings.

Under IDEA 2004, the IEP document must include the following: “ (I) a statement of the child ’ s present levels of academic

achievement and functional performance, including — (aa) how the child ’ s disability affects the child ’ s

involvement and progress in the general curriculum;

(bb) for preschool children, as appropriate, how the disability affects the child ’ s participation in appropriate activities; and

(cc) for children with disabilities who take alternate assessments aligned to alternate achievement standards, a description of benchmarks or short-term objectives;

(II) a statement of measurable annual goals, including academic and functional goals, designed to — (aa) meet the child ’ s needs that result from the

child ’ s disability to enable the child to be involved in and make progress in the general curriculum; and

(bb) meet each of the child ’ s other educational needs that result from the child ’ s disability;

(III) description of how the child ’ s progress toward meeting the annual goals … … will be measured and when periodic reports on the progress the child is making toward meeting the annual goals (such as through the use of quarterly or other periodic reports, concurrent with the issuance of report cards) will be provided;

(IV) a statement of the special education and related ser-vices and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifi cations or supports for school personnel that will be provided for the child — (aa) to advance appropriately toward attaining the

annual goals; (bb) to be involved and progress in the general cur-

riculum … … and to participate in extracurric-ular and other nonacademic activities; and

(cc) to be educated and participate with other children with disabilities and nondisabled children;

(V) an explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular class; … …

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To explain the relationships among impairment, activity limitation, and participation restriction, a therapist might use reading as an analogy. Reading is a very important goal of education, and few teachers would negate the importance of the child ’ s fi rst learning the prerequisite alphabet. The alphabet in itself has little value, just as complete knee range of motion has little value as an objective by itself. But knowing the alphabet is critical for reading and writing, and knee range of motion is critical for walking and stair climb-ing. The ability to walk or climb stairs expands the child ’ s ability to explore his environment, learn, and, most impor-tant, achieve the goal of IDEA of “ independent living, and economic self-suffi ciency for individuals with disabilities ” [PL 108-446, 118 Stat. 2649, Part A, § 601(c)(1)]. Eliminating short-term objectives in the IEP is unfortunate, because they offer an excellent way of monitoring outcomes for progress reports, and they are often better indicators of the services required than are annual goals. Therapists still might have to include short-term goals or objectives in their plans of care, depending on their state practice act requirements.

The physical therapist should participate in the IEP meeting to assist in determining the child ’ s measurable annual goals for the next year. Consensus among experts in pediatric occupational and physical therapy indicate that outcomes should (1) relate to functional skills and activities, (2) enhance the child ’ s performance in school, (3) be easily understood, (4) be free of professional jargon, and (5) be realistic and achievable within the time frame of the IEP. 32 These experts suggested that if a skill or activity cannot be observed or measured during the student ’ s typical school day, then it might not be relevant to the student ’ s educational needs and, therefore, may not be appropriate to include as an IEP goal. The therapists surveyed did not reach consensus on whether generalization of skills across settings is important.

An example of a desired outcome and the objectives involving independent stair climbing is illustrated in Box 30-4 . To climb stairs at school independently, a child should have 90 degrees of knee fl exion and good strength in the quadriceps muscles. Educationally relevant objectives are included in the child ’ s IEP, and the other short-term objec-tives, which may or may not be considered educationally relevant, are included in the therapist ’ s plan of care. Docu-mentation of progress toward achievement of each objective is important to share with the child and family. Attainment of short-term objectives should be recognized and rewarded in lieu of waiting, perhaps a long time, for achievement of the long-term goal.

Measurable annual goals and objectives should contain a statement of the behavior to be achieved, under what condi-tions, and the criteria to be used to determine achieve-ment. 37,75 When performing a task analysis and developing the short-term objectives, several variables should be consid-ered: (1) changes in the behavior itself, (2) changes in the conditions under which the behavior is performed, and (3)

including academic and functional goals. For children requiring alternate assessment, short-term objectives must also be developed. Short-term objectives serve to break down more global, comprehensive goals into manageable elements. They assist in determining whether the child is progressing in reasonable periods of time and help defi ne criteria for the required progress reports. Short-term objectives also assist in clearly identifying when related services might be indi-cated. For example, instruction by a general or special educa-tion teacher might be considered suffi cient for an annual goal regarding independently using the cafeteria or the library. A child who is just learning to use a walker around the school, however, may need the services of a physical therapist. General and special education teachers may not have the expertise to teach the child to use a walker and perform the task of opening the library and cafeteria doors, then entering and picking up a book or tray. Achieve-ment of the annual goal might require a physical therapist to teach mobility activities and transfers, an occupational therapist to instruct in feeding activities, and a speech-language pathologist to work on communication in the food line or library.

For establishment of goals and objectives, the desired out-comes must fi rst be identifi ed. Determining desired out-comes might be as simple as merely asking the child, or it might require several team meetings. Outcome statements do not need to be measurable, but they should be functional. Once the desired outcomes are selected, the IEP team must defi ne the goals that are necessary for the student to achieve them. Goals should be context specifi c, defi ned by relevant life skills or academic tasks in a school setting. 83 Educational goals should also be discipline-free; that is, they are goals for the student, rather than goals for physical therapy or occu-pational therapy. 84 They must be measurable, refl ecting best practice 2,75,83,105 and the requirements of IDEA 2004 (Public Law 108-446). In an educational setting, goals are written to be achieved within the school year.

For students requiring alternate assessment and others, depending on state law, measurable short-term objectives are developed after desired outcomes and annual goals are iden-tifi ed. “ Objectives are developed based on a logical break-down of the major components of the annual goals, and can serve as milestones for measuring progress towards meeting the goals ” (p. 44838). 43 Objectives must relate to the educa-tional program of the child, are based on a task analysis of the annual goal, and are not discipline specifi c (see Table 30-2 ). They should be functional and educationally relevant and might be written into the IEP. In some situations, a short-term objective for reduction of impairment is relevant because that step is limiting the child ’ s achievement of the annual goal. Short-term objectives for reducing impairments may be important to document progress toward achieve-ment of the annual goal, but because they are not directly relevant to the educational program, they should not be part of the IEP.

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or 80% of the time, should be considered carefully for their practicability. Successfully crossing the street only 80% of the time can be fatal! Selection of the behavior, conditions, and criteria for judging attainment of each objective for each individual child must be based on sound professional judg-ment. Books, computer programs, and other materials that provide lists of potential objectives should not replace pro-fessional judgment. In addition to the task variables, consid-eration should be given to the hierarchy of response competence. 1 A behavior is acquired and then refi ned as fl uency or profi ciency develops. The skill must then be main-tained and fi nally generalized or transferred to multiple environments, individuals, and equipment. Acquisition, fl uency, maintenance, and generalization of behaviors are the terms used by educators that can be applied to motor learning. The concepts of effi ciency, fl exibility, and consis-tency have also been used to defi ne skill components of goals. 99 Use of this terminology is important when there is a need to convey the rationale for providing services past the acquisition phase.

Therapists are encouraged to consider using a prompting system as a strategy to achieve an objective and as a variable in writing the criteria for judging attainment of the objective ( Figure 30-1 ). Systematic delivery of levels of prompting assistance may be implemented in two ways. One is the “ system of maximum prompts, ” and the other is the “ system of least prompts. ” 1,37 The prompts are usually verbal or visual cues, demonstration or modeling, partial assistance or physi-cal guidance, and maximum assistance. In the system of maximum prompts, the therapist initially provides maximum assistance and then gradually, over successive sessions, reduces the amount of assistance as the child achieves more independence. This is also referred to as fading . This is a common technique used by therapists, and it allows for maximal success during learning. This system is best suited for acquisition, when it is important to avoid unsafe move-ment, and for a complex series of tasks such as some activi-ties of daily living.

In the system of least prompts, the child is initially pro-vided the least amount of assistance, usually a verbal or visual cue, and then progresses as necessary to model, guide, or maximal assistance. This approach allows the child to display his or her best effort before the therapist prematurely provides unnecessary assistance. The system of least prompts is best for tasks in which the child has some ability or is developing fl uency or generalization to new settings, indi-viduals, or equipment.

Therapists should incorporate other principles of motor learning into the development of short-term objectives and intervention sessions. Increasing muscle strength can con-tribute to improved motor control and function, particularly improved walking. 88 Practice of motor skills should be struc-tured in ways to promote learning through consideration of part versus whole practice, use of contextual interference, blocked versus random practice, massed versus distributed

changes in the criteria expected for ultimate performance. 1 Changes in behavior may refl ect a progression from basic skills to more complex skills or to increasing levels of func-tional ability. Changes in conditions may range from simple to complex, such as walking in an empty hallway to walking in a hallway with other students. Criteria for progression may be qualitative or quantitative and might include the qualitative measure of perceived exertion during stair climb-ing or the quantitative measure of walking speed. Use of quantitative criteria, such as judgment by three of four trials,

Box 30-4 Example of Desired Outcome, Annual Goal, and Short-Term Objectives

DESIRED OUTCOME

Jonathan says: “ I want to be able to climb the steps to get into school. ”

ANNUAL GOAL (LONG-TERM OBJECTIVE) THAT IS MEASURABLE AND EDUCATIONALLY RELEVANT

Jonathan will walk up and down the school stairs independently without using the railing.

SHORT-TERM OBJECTIVES THAT ARE MEASURABLE AND EDUCATIONALLY RELEVANT

1. Jonathan will climb up eight stairs at school with standby supervision using a railing.

2. Jonathan will climb up eight stairs at school with standby supervision without using a railing.

3. Jonathan will climb down eight stairs at school with standby supervision using a railing.

4. Jonathan will climb down eight stairs at school with standby supervision without using a railing.

5. Jonathan will climb up eight stairs at school without supervision or using a railing.

6. Jonathan will climb down eight stairs at school without supervision or using a railing.

SHORT-TERM OBJECTIVES THAT ARE MEASURABLE BUT NOT DIRECTLY EDUCATIONALLY RELEVANT

These objectives, which relate to impairments in body structures and functions, are necessary to achieve the educationally relevant short-term and annual goals and would be part of the therapist ’ s plan of care, but not in the IEP. 1. Jonathan will progress from 30 ° to 50 ° of active

right-knee fl exion. 2. Jonathan will progress from a poor (1/5) to a fair (3/5)

muscle-strength grade in his left quadriceps. 3. Jonathan will achieve 90 ° of active right-knee fl exion. 4. Jonathan will achieve a good (4/5) muscle-strength grade

in his left quadriceps.

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making and include potential for improvement; critical period for skill development; amount of training required to carry out an intervention (if anyone can assist with the inter-vention, then less therapist time is required); and signifi -cance of the problem for the child ’ s education. 63 Table 30-3 depicts a matrix of factors to consider when deciding on the extent of physical therapy services required. On this scale, students with several ratings of 4 would probably require more intervention than those with predominant ratings of 1. Physical and occupational therapists from the Cincinnati Children ’ s Hospital used the Iowa guidelines to develop guidelines for frequency of therapy services in a medical setting. They provided guidance on frequency using four modes of service delivery: (1) intensive (3 to 11 times a week), (2) weekly or bimonthly (1 to 2 times a week to every other week), (3) periodic (monthly or less often but at regu-larly scheduled intervals), and (4) consultative (episodic or as needed). 8

Without the use of an accepted clinical reasoning tool or objective measure for establishing educational need, school-based physical therapists have diffi culties making decisions that support the intent of the IDEA while withstanding outside pressures. The Considerations for Educationally Relevant Therapy for Occupational Therapy and Physical Therapy (CERT) and the Determination of Relevant Therapy Tool (DRTT) are two examples of clinical reasoning models that provide objective data for school-based therapy decision making. Over the past 25 years, therapists in Florida have been developing the CERT, a system intended to assist in determining school-based therapy services. The CERT is not an assessment, but rather “ a summary of educational con-siderations based on a review of student records, evaluations,

practice, schedules of feedback, knowledge of performance, and knowledge of results. 113 Breaking down any of these ele-ments into a progression of simpler to more complex skills can lead to effective objectives. In the education literature, this is referred to as scaffolding (see Chapter 4 ).

FREQUENCY AND INTENSITY OF INTERVENTION

At the IEP meeting, the frequency and intensity of all services should be determined by the entire team. The physical thera-pist must collaborate with other team members to determine the appropriate amount of physical therapy intervention, combined with the child ’ s other interventions, educational program, and recreation activities. Competing priorities need to be considered so that other areas of importance are not neglected for the child to receive therapy. Appropriate balance among education, therapy, and leisure (play) is an important issue for discussion with parents, particularly with parents who believe that “ more is better. ” The avail-ability of physical therapists should not be a factor in deter-mining the frequency and intensity of the intervention. However, Kaminker and colleagues 69 found regional differ-ences in frequencies of intervention provided by school-based physical therapists, corresponding to ratios of available therapists to students.

The frequency and duration of the physical therapy ser-vices required to achieve a specifi c goal are neither well understood nor well documented. 8,63 Until suffi cient peer-reviewed evidence is obtained, decisions on how much inter-vention is required to achieve a goal largely depend on professional judgment and consideration of the needs of the individual child. Numerous factors enter into decision

Figure 30-1 Hierarchy of prompting assistance.

Maximum Prompts

Start with

Most intrusive

prompt and fade to

least intrusive

prompt

VISUAL

VERBAL

MODELING

PHYSICAL GUIDANCE

Least Prompts

Start with

Least intrusive

prompt and use

more intrusive only

as absolutely

necessary

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practice, use of the DRTT provides a means to validate deci-sions related to models and delivery of services, beyond the use of clinical judgment alone. Consistent service delivery among therapists in any jurisdiction helps to alleviate the disputes between families and teams that may arise regarding service recommendations, as well as to support administra-tion with appropriate staffi ng ratios to meet IEP needs, while managing therapist costs (S. Cecere, personal communica-tion, December 14, 2009).

INTERVENTION Intervention must be based on the needs of the child, not of the system or professionals. The content, goals, frequency, location, and intensity of intervention are decided collabora-tively by the IEP team at the IEP meeting. Effective com-munication among team members is crucial for the planning, provision, and coordination of services, to avoid overlap of services, missed services, and confl ict. 84 The Guide to Physical Therapist Practice 2 describes three components of intervention, all of which are essential in the educational environment: coordination, communication, and documen-tation; patient/client-related instruction; and procedural

observations, progress notes, parent/teacher information and other data ” (p. 2). 46 The CERT includes a Summary Sheet, a Student Profi le, and a Therapy Profi le completed by the therapist. The Student Profi le rates the student ’ s abilities in personal care, mobility, gross motor skills, fi ne motor/visual motor skills, and sensory processing. The Therapy Profi le indicates the number of years the student has received educationally relevant therapy, potential response to educa-tionally relevant therapy, students ’ learning environment, therapy services provided to the student, and support ser-vices provided to school staff and/or parents. Contrary to the Iowa guidelines, a rating of 1 suggests that the student has relatively adequate abilities, and a rating of 4 indicates that the student requires intensive training or assistance. Detailed information on the CERT is available at http://www.fl doe.org/ESE/cert.asp .

In Maryland, the DRTT 20 has been developed to assist in occupational therapy and physical therapy service recom-mendations to the IEP team. For newer therapists, this method encompasses the range of roles and responsibilities of therapists and requires the user to consider all aspects of therapeutic and educational programming prior to decision making. For those therapists who have experience in school

Adapted from Iowa guidelines for educationally related physical therapy services. (2001). Des Moines, IA: Iowa Department of Education. Reprinted with permission.

TABLE 30-3 Factors to Consider When Determining the Intensity and Frequency of Physical Therapy

Factors 1 * 2 3 4

Potential to benefi t from intervention

Student demonstrates minimal potential for change

Student appears to have potential for change but at a slow rate

Student appears to have a signifi cant potential for change

Student appears to have a very high potential to improve skills

Critical period of skill acquisition or regression related to development or disability

Not a critical period Minimally critical period Critical period Extremely critical period

Amount of motor program that can be safely performed by others

Motor program can be carried out safely by others with periodic intervention by therapist

Many activities from the motor program can be safely performed by others in addition to intervention by therapist

Some activities from the motor program can be safely performed by others in addition to intervention by therapist

A few activities can be safely performed by others but most of the motor program requires the expertise of the therapist

Amount of training provided by therapist to others carrying out the program

Teachers, staff, and parents able to meet student ’ s needs with no additional training required

Teacher, staff, and parents require some training and follow-up

Teacher, staff, and parents could be trained to carry out activities

Teacher, staff, and parents might carry out some activities with extensive training and follow-up

Impact of motor problems and environment on educational program

Environment is accommodating and motor diffi culties are minimal

Environment is accommodating and motor diffi culties moderately interfere with educational program

Environment is accommodating but motor diffi culties are signifi cant and interfere with educational program

Environment is not accommodating; or environment is accommodating but problems are severe

* Numbers are ordered from lowest (1) to highest (4) need for direct services.

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component of all intervention plans. Instruction should begin and continue as needed: at the start of every school year, at the initiation of physical therapy services, when a child enters a new school, and when a new staff member becomes involved in the care of the child.

In the integrated and collaborative service-delivery models, teachers, staff, and parents participate in the delivery of some aspects of the intervention. Their involvement may be as simple as using proper positioning techniques, or as complicated as handling procedures for transfers and mobil-ity. These individuals must be instructed on proper position-ing of the student, safe body mechanics of the caregiver, use of adaptive equipment, and ways to encourage selected motor activities. It is generally prudent for the physical ther-apist to provide the primary instruction at the initial acquisi-tion stage of motor learning, relinquishing care to the classroom staff at fl uency and generalization stages.

Selection of which activities to teach other caregivers is a professional decision that must be based on characteristics of the individual child, the specifi c activity, and the capabili-ties and interest of the other individuals. In a series of single-subject design studies, Prieto 98 found that teachers are more likely to encourage children to perform gross motor activi-ties when they have been properly instructed. Soccio 116 com-pared the frequency of opportunities to practice specifi c gross motor skills during individual physical therapy ses-sions and group early intervention classes. There was no difference in the number of opportunities to practice head control when direct physical therapy was compared with integrated group sessions for a child with severe disabilities. Two children with cerebral palsy, however, had more oppor-tunities to practice standing and ambulation activities during direct, individual physical therapy sessions than during inte-grated group sessions in the classroom. Results suggest that the opportunity to practice motor activities in the classroom varies, based on the type of movement and the class routines. Therapists must carefully select those activities they delegate to others because opportunities for active gross motor move-ment in classrooms may be limited. 95

PROCEDURAL INTERVENTIONS

Procedural interventions in school settings are frequently not as important as the other two components of interven-tion. However, as noted in Table 30-3 , some situations would suggest a need for direct intervention, such as (1) when a child is at a critical period of skill acquisition or regression; (2) when the interventions require the expertise of a physical therapist; and (3) when integrating therapy interferes with the educational program. Best practice, research, and federal law indicate that most, if not all, intervention should occur in the natural environment, with an emphasis on providing multiple opportunities to practice specifi c skills. 5,40,52,56,103,118 When gross motor skills are learned in isolated settings, such as a physical therapy department, there is little generalization

interventions. The amount of time and effort devoted to each will depend on the needs of the child and may vary at different times of the school year.

COORDINATION, COMMUNICATION, AND DOCUMENTATION

Coordination, communication, and documentation are par-ticularly important in schools where the therapist is in the building only occasionally, and direct interaction with other team members is limited. Frequent communication with parents, teachers, and other related service personnel must be established and maintained. This may be accomplished through regularly scheduled meetings, informal conversa-tion, and written progress reports, as well as by telephone and electronic communication.

Documentation must follow local, state, and national requirements for both education and physical therapy. This means that, although the education agencies might dictate that progress reports are provided to the family only at the same frequency as for children who do not have a disability, the state physical therapy practice act might require docu-mentation after each intervention session. The APTA Defen-sible Documentation Resource 3 suggests the following: (1) documentation is required for every visit/encounter; (2) documentation should indicate cancellations; (3) documen-tation must comply with regulatory requirements; (4) entries must be made in ink and properly authenticated; (5) elec-tronic entries should be secure; and (6) documentation in pediatrics should be aligned with family-centered care and should emphasize the functional abilities of the child. Spe-cifi c to school settings, the physical therapist should “ docu-ment all strategies, interventions, staff/student training and education, and communication with the student ’ s parents/guardians or community based services ” (p. 43). 3 In addi-tion, although the IEP team might decide that physical therapy services are no longer required, discontinuation of physical therapy must be documented by the physical thera-pist in a fi nal summary to close that episode of care. Services billed through Medicaid and other insurance providers usually require additional documentation. There is great variation across the country with regard to documentation of school-based physical therapy services; therapists must consult their state practice acts to ensure that they are in full compliance.

CHILD – AND FAMILY – RELATED INSTRUCTION

Child- and family-related instruction, along with instruction to other team members, is a critical area of practice in school settings. Practice is essential for acquisition, fl uency, and generalization of skills 25,127 ; consequently, the family and the IEP team may be largely responsible for assisting the child in carrying out or practicing motor skills. Instruction of parents and appropriate staff members should be a major

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systematic reviews of common interventions used in educa-tional settings. Therapists must learn to search the literature for recent developments in research to support the interven-tions they use. If the appropriate intervention cannot be provided for a school-age child because it is not education-ally relevant and is not related to the objectives in the IEP, the therapist has a professional obligation to inform the parents. Once the parents are aware of the focus of school-based physical therapy, they might obtain additional therapy elsewhere.

Careful monitoring of progress is critical in determining the effectiveness of and the need for continued intervention. David 27 outlined a measurement process that has been devel-oped for use by collaborative educational teams. The system involves (1) defi ning the performance problem; (2) identify-ing the performance expected and outcome criteria; (3) developing a systematic, simple, and time-effi cient measure-ment strategy; (4) having a data-graphing system; (5) pro-viding intervention; (6) monitoring progress; and (7) participating in systematic decision making and intervention changes. David stated that “ monitoring without decision making is a waste of valuable time and effort ” (p. 56). 27 A simple but comprehensive system of data collection using self-graphing data-collection sheets is recommended. 37 The availability of laptop computers has also made data collec-tion and its graphic presentation much easier for many therapists. Extensive documentation is necessary to support the need to increase, decrease, or discontinue intervention. Documentation of the child ’ s status before and after short and long school breaks is important in determining the need for ESY services.

Physical therapy intervention is not a lifelong activity such as learning and fi tness. Both therapists and parents must recognize that, after a period of service delivery with no measurable progress, intervention should be discontin-ued, or the model should be changed to monitoring. A con-tinued desire for walking, for example, is not justifi cation for continued therapy after due diligence in trying to achieve a goal. Therapists report that the most important factor in successful discontinuation of services is the child ’ s achieve-ment of functional goals. 38 Choosing to discontinue direct intervention when goals have not been met continues to be a challenging area of decision making, although tools like the CERT and DRTT should help in the process.

TRANSITION PLANNING Change can be diffi cult for anyone, and the transition from one environment to another can be stressful for both chil-dren and their parents, especially for those students with a limited repertoire of response competence. Because all tran-sitions are important, two critical times were identifi ed in IDEA when attention must be paid to transition and the provision of transition services. These times include: (1) when the child is preparing to move from family-centered

to the more natural environment of the home or recreational settings. 15

Assessment of the school environment and safety consid-erations take precedence initially over direct interventions. The physical therapist should participate in the development of written plans for emergency evacuation from the school building and the school bus, in addition to instructing appropriate personnel on the implementation of these plans. The physical therapist should be present during evacuation drills and might assist in the practice of safe techniques using weighted dummies and different models of wheelchairs.

The physical therapist ’ s assessment of the student ’ s environment should begin with proper positioning on the bus and in classrooms. Safety of the aisles for walking or wheelchair mobility should be considered. Architectural bar-riers must be evaluated and appropriate actions taken to eliminate or lessen them. Teachers and family should be consulted regarding their concerns, and they should be instructed in proper handling, positioning, and use of body mechanics.

Direct intervention, if indicated, should start in the natural environment of the classroom. This is accomplished easily with preschoolers. 52 It is more diffi cult for children whose educational programs consist primarily of academic subjects that occur in the general education classroom. Phys-ical therapy in the algebra class or school library, after the initial consultation, is generally inappropriate. Common sense must prevail. Perhaps therapy can be delivered during gross motor time in a preschool or during physical educa-tion. This is not always appropriate, however, because this might be the only time the child has to engage in free play and physical activity with peers. Taking this opportunity away from the child might affect motivation, cooperation, and the development of important social skills that occurs during these activities.

Merely moving traditional intervention from a special room to a more natural environment is also not in the spirit of best practice. The therapist must adjust intervention to the unique opportunities afforded in the natural environ-ment. Available furniture or classroom items should be used, as opposed to bringing in special equipment. Use of these common objects increases the likelihood that the child might use them to practice and develop motor skills when the therapist is not present and allows the therapist to model their use for the parent or teacher. The specifi c type of inter-vention provided depends on the needs of the individual child and the education, training, and experience of the therapist. IDEA 2004 requires that interventions be provided “ based on peer-reviewed research to the extent practicable ” [PL 108-446, 118 Stat. 2707-2709, § 614(d)(1)(A)(IV)]. Although physical therapy intervention has been advancing toward evidence-based practice, many interventions do not have suffi cient peer-reviewed research. Throughout this text, peer-reviewed research and evidence-based practice are presented when available. Effgen and McEwen 41,42 published

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• Communication with the family and other transition team members regarding daily routines, physical expecta-tions, and demands of the anticipated new environment

• Communication with the student ’ s vocational rehabilita-tion counselor, occupational therapist, and teachers regarding preparation for mobility and functional activi-ties in the new setting

• Onsite evaluation of the new physical environment and intervention to ensure the student ’ s ability to physically maneuver throughout the setting

• Evaluation of the accessibility of required transportation systems and intervention as required

• Onsite consultation and education of the student, family, and staff related to the student ’ s physical functioning in that environment

• Onsite assessment and identifi cation of assistive technol-ogy needs of the student for the new environment

• Assistance in securing assistive technology and instruction in its use

• Attendance at IEP and other meetings as appropriate • Consultation throughout the transition process to ensure

that recommendations are appropriate and that the student is successful 114 Effective transition services can be impeded by issues

related to collaboration and communication among team members. These include lack of shared information across agencies; follow-up data that could improve services; atten-tion to health insurance and transportation; systematic tran-sition planning with the agencies that will have responsibility for post-school services; anticipating the needs of the student post school; and effective management practices. 65 Although the physical therapist is usually not in a leadership role to make major changes in the transition service system, the therapist can provide assistance in several of the problem areas noted. The therapist has the ability to provide informa-tion on health insurance; evaluation of transportation needs; equipment for mobility, positioning, and self-care; and anticipation of the physical demands required of the student post school. A therapist ’ s knowledge of the physical demands of post-school settings, such as college or work environ-ments, would help the team to assist the student in effective transitioning to those environments. In Chapter 32 , Transi-tion to Adulthood for Youth with Disabilities, preparation of youth with disabilities for adult roles is addressed, including transition services provided within the education and health care systems.

MANAGEMENT OF PHYSICAL THERAPY SERVICES

Successful management and service delivery in educational environments depend on an understanding of the impor-tance of the team process. The physical therapist, as a member of the educational team, must collaborate effectively with the child, the family, and professionals of other disciplines to

early intervention services under Part C to preschool services under Part B, 58 and (2) when the student is preparing to transition out of secondary school into the community. 47

Although the transition from family-centered early intervention services to preschool services is supposed to be “ seamless, ” the transition process is often diffi cult for both the child and the family. It is usually accompanied by a change in the state agency providing the services, which typically includes a change in the method of service delivery and in personnel. Family-centered services of early interven-tion are replaced by school system services with reduced family involvement and with service providers focused on educational goals. Communication between parents and providers also becomes more challenging. Physical therapists have not been as engaged as they should be in the transition process for children from early intervention to preschool. They rarely attend transition team meetings and have not received specialized training in transition, but they do report that they work with families during the transition process. 121

Under IDEA 2004, transition services for post-secondary education comprise “ a coordinated set of activities for a child with a disability that … … is designed within a results-oriented process that is focused on improving academic and functional achievement of the child with a disability to facili-tate the child ’ s movement from school to post-school activi-ties, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult ser-vices, independent living, or community participation; is based on the individual child ’ s needs, taking into account the child ’ s strengths, preferences, and interests; and includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation ” [PL 108-446, 118 Stat. 2658, § 602(34)].

Transition assessments and services must begin no later than the fi rst IEP to be in effect when the child is 16 years of age [PL 108-446, 118 Stat. 2709, § 614(d)(1)(A)(VIII)] or younger if determined appropriate by the IEP team. 45 Physi-cal therapists should serve on transition teams for children with physical disabilities who are currently receiving ser-vices, as well as for those for whom services have been dis-continued. A young adult may no longer have a school-related need for physical therapy, but the therapist can assist in evaluating and intervening to facilitate post-school planning and services.

All transition planning should be determined collabora-tively by the school team along with both the student and the family. Emphasis should be placed on self-determination, person-centeredness, and career orientation. 7 The role of the physical therapist in transition planning and in services for students with physical disabilities might include the following:

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developed for obtaining referrals. The referral allows the therapist to examine and evaluate the student, and then to determine and provide appropriate intervention. Depending on the complexity of the child ’ s medical problems and the need for pertinent information, it might be prudent for the therapist to obtain a referral even when not legally required. Collaboration with physicians and all other members of the child ’ s medical and educational team promotes optimal service delivery.

School districts need to develop guidelines to determine therapy workloads and caseloads, as well as for decision making with regard to who should receive intervention and how much intervention should be provided. This can be a diffi cult task. The CERT, DRTT, and Iowa Guidelines for Educationally Related Physical Therapy Services (see Table 30-3 ), 63 as discussed, should help with the decision-making process. Children with critical needs for therapy require more intense intervention than do those with lesser needs. A therapist whose caseload primarily includes children with extensive needs for therapy is able to serve fewer children than a therapist whose caseload mostly comprises children with minimal needs. A clear system of documentation is needed to support the complex, sensitive decisions regarding allocation of physical therapy services.

ISSUES IN SCHOOL-BASED PRACTICE

SHORTAGE OF PEDIATRIC PHYSICAL THERAPISTS

A shortage of pediatric physical therapists with the skill set for serving children in the educational setting has been an ongoing problem. It may be attributed to relatively low pay, professional isolation, benefi ts of other areas of practice, and diffi culty in working with children. Solutions are numerous and sometimes complex, but one of the easiest is often neglected. An effective way to train and then recruit new physical therapists is to offer student clinical affi liations in educational settings.

Physical therapy is not the only school-based profession where shortages exist. In 2005, an organization was estab-lished to address these issues: the National Coalition on Per-sonnel Shortages in Special Education and Related Services (NCPSSERS). The Coalition represents 30 national, state, and local professional organizations from eight different dis-ciplines. Its stated mission is “ to sustain a discussion among all stakeholders on the need for and value of special educa-tion, related services, and early intervention; and to identify, disseminate, and support implementation of national, state, and local strategies to remedy personnel shortages and per-sistent vacancies for the benefi t of all children and youth. ” 92

SERVICE-DELIVERY SYSTEM

A shortage of qualifi ed physical therapists has affected the type of service-delivery system used and the roles assumed

promote the child ’ s total well-being through each phase of the educational process. Just as team leaders or case manag-ers are needed on intervention teams, so too a manager or director of physical therapy is needed in school settings. A majority of directors of physical therapy services in school systems across the nation are not physical therapists or, indeed, any type of related-service personnel. 40 This has serious implications. To understand professional roles and responsibilities and how to nurture a professional, one must understand the profession. Many of the problems encoun-tered in school systems could probably be prevented if an experienced therapist provided supervision. Therapist man-agers understand the profession and are able to appropriately address management issues. States such as Iowa and North Carolina, which have therapists working in the state depart-ment of education, have become national leaders in setting policy for related-service providers. These therapists help to coordinate services throughout the state and educate both therapists and educators regarding the role of physical thera-pists in educational environments.

Therapists, unlike teachers, are educated to work in a wide variety of settings, but very few have the opportunity to learn about school-based practice. Those who are new to practice in educational environments in general and those who are new to a particular school system should receive orientation, mentoring, and in-service education. The roles and responsibilities of the therapist and all support staff should be clearly identifi ed in a detailed job description that complies with federal and state laws. As part of a planned orientation program, therapists should be introduced to the entire team of professionals with whom they will be working at all sites. They need to know whom to ask for equipment, space, and other items necessary for successful intervention. Therapists need to know how referrals are received and handled; how workloads and caseloads are determined; how team meetings are planned and when they are scheduled; the written policies and procedures; how peer review or quality improvement is done; emergency procedures; and the policy for continuing education, to name but a few issues. These are not unusual requests, and they can be addressed easily and cost-effectively in any system.

After the therapist is properly introduced and oriented to the system, administrators and therapists must continue to communicate regularly before problems arise. Frequent areas of discontent include too much travel among school buildings and lack of appropriate continuing education opportunities, peer contact, a place to work, and time allot-ted for administrative tasks and meetings. 40 More time and effort should be spent on retention of physical therapists to reduce the need for recruitment.

Most physical therapy state practice acts in the United States allow a therapist to examine and evaluate without a physician ’ s referral, and 42 states also allow therapists to provide intervention without a referral. In states where physician authorization is required, a system should be

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living and economic self-suffi ciency, which have broad implications for the provision of physical therapy.

Physical therapy is perceived as more educationally rele-vant when goals and objectives are mutually agreed upon by the entire educational team. The educational system was never meant to provide for all the child ’ s therapy needs. Physical therapy may be provided outside of the educational system as appropriate; all therapists serving the child should collaborate and coordinate services. Therapists and parents must remem-ber that therapy takes time away from other educational and social opportunities that are vital to the total well-being of the child. These competing priorities must be considered when making decisions regarding service delivery.


As more children are educated in the least restrictive envi-ronment, therapists must be willing to travel to meet the needs of those students. Unfortunately, travel among many schools is not the most time- and cost-effective method of service delivery. Therapists and administrators must be cre-ative in their approach to serving children in their local schools. Materials have been developed that have successfully encouraged inclusive education, such as Choosing Options and Accommodations for Children: A Guide to Planning Inclu-sive Education (COACH) . 48

REIMBURSEMENT FOR SERVICES

The cost of providing related services in educational envi-ronments is a serious concern of program administrators. IDEA provides some federal funding to states, but it has never been enough to cover the full spectrum of services needed by children in special education. To cover the costs of physical therapy, some school systems are charging third-party payers. This can be problematic because of the lifetime cap on many insurance policies, limited therapy coverage, and the possibility of losing insurance if bills are too high. Parents are not required to have their insurance company pay for these services, and they should not be intimidated into thinking that their child will not receive services without insurance payment. School systems may bill Medicaid directly for physical therapy. A concern regarding using Medicaid is that reimbursement is usually based on direct services, and consultation, team intervention, and group treatments are discouraged. Medicaid rules and regulations are determined by each individual state, and therapists should be active at the state level to make certain that these rules and regulations facilitate and do not hinder appropri-ate school-based intervention.

TRANSPORTATION

Transportation of children receiving special education is a required related service. Ensuring that children are

by school personnel. The literature supports integrated or collaborative service-delivery models. 34,57,104 There are obvious advantages to more frequent practice in natural set-tings with the support of all those who interact with the student. An appropriately administered therapy program in the natural environment might require more, and certainly not fewer, personnel. Training all staff members in a truly integrated or collaborative model requires a great deal of time for instruction and meetings. 49 There are those, however, who incorrectly think that these models can be used to decrease the time required for physical therapy. It should be noted that “ Teams Take Time ” (the three T ’ s). Instead of direct intervention by a therapist, unqualifi ed staff might perform activities without adequate supervised instruction, or a teacher might be forced to provide an intervention for which he or she is not properly trained. Instead of providing the intervention in a room with necessary equipment, a classroom or hallway is used in the name of natural environ-ment. Rarely are empirical data suffi cient to support any service-delivery system. Educators and therapists alike must continually ask themselves if they are truly meeting the needs of each individual child.

PROFESSIONAL ROLES

In school systems with a full staff, professionals can collabo-rate to decide on the role of each team member. Overlap of professional roles is acknowledged, and divisions of respon-sibility are made that are best suited to the needs of the child, system, and professional staff. 128 In general, the overlap in physical therapy, occupational therapy, and education is greatest when professionals from these disciplines are serving young children. For older children, less overlap in profes-sional roles exists. Areas of frequent overlap between occu-pational therapy and physical therapy include programs for strength and endurance, body awareness, classroom posi-tioning and adaptations, enhancement of motor experience, and sensory integration. Areas of overlap between physical therapists and educators might include advanced gross motor skills, endurance training, and transfers. In systems with a critical shortage of physical therapists, the breadth of roles assumed by other staff members increases, based on need and not necessarily on professional skill.

EDUCATIONALLY RELEVANT PHYSICAL THERAPY

McEwen and Shelden 86 summarized a topic of frequent debate: physical therapy that is educationally relevant as compared with that which is not. In school systems that are committed to the comprehensive provision of services to children with disabilities with adequate therapy staff, the defi nition of educationally relevant physical therapy is com-prehensive; it depends on the individual needs of the child, as addressed at the IEP meeting. IDEA clearly indicates that education is intended to prepare students for independent

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therapists will not know that unless they are very familiar with the laws.

School-based therapists need to become effective members of a team, using the various models described in this chapter. Those who have worked in other pediatric set-tings, such as early intervention and pediatric hospitals, may be accustomed to working with a team, as may therapists who have worked in rehabilitation settings. Therapists who have practiced in outpatient physical therapy settings, however, may not be adequately familiar with team func-tioning and the degree of role release and collaboration required in the school setting.

Intervention in educational environments is also some-what different from other settings. As already discussed, goals and objectives must be educationally relevant. Inter-vention is based on the Guide , 2 including coordination, communication, and documentation, as well as patient/client-related instruction. For children who demonstrate high ratings of the factors outlined in Table 30-3 , procedural interventions might be provided. However, many students do not require direct intervention, and this change in focus can be diffi cult for some therapists who are accustomed to providing direct services.

Therapists new to school practice would be wise to seek an experienced mentor, either within or outside the school system. Many school therapists work in isolation, and they do not have access to the guidance and support provided in other clinical settings. They work frequently with teachers, but not necessarily with other therapists who can evaluate their knowledge and skills and with whom they can discuss cases. School administrators need to recognize the effect of this professional isolation for both experienced therapists and those new to the school environment, and they should support the therapist in fi nding a mentor.

Therapists, especially new graduates and those new to educational environments, should strive to achieve the com-petencies for school-based physical therapists as outlined in Box 30-5 . 39 These competencies may also be shared with administrators to help defi ne the role of school-based physi-cal therapy and to identify the resources necessary for effec-tive service delivery. Therapists should continually read, participate in continuing education, take post-professional courses, and engage in dialogue with colleagues. The Section on Pediatrics of the American Physical Therapy Association offers a wide variety of excellent resources for school-based therapists. Employers need to support therapists ’ efforts at ongoing professional development.

transported safely and effi ciently is the responsibility of the school system. Many individuals assist in the transportation process, and the National Highway Traffi c Safety Adminis-tration 93 has numerous resources to assist in understanding the safe transportation of children. A physical therapist might be asked to assess the safe seating of a student with a disability in a school bus seat or wheelchair; safe embarking and debarking from the bus; and emergency evacuation pro-cedures. Therapists must understand what makes a wheel-chair safe for transportation and how to tie down the wheelchair and use occupant-restraint systems. The thera-pist and the team must discuss and plan for evacuation and must discuss issues related to the student ’ s size, weight, and height; implications of different medical diagnoses (e.g., osteogenesis imperfecta); orthopedic concerns; physical lim-itations; ability of the student to assist; whether a student stays in the wheelchair; and who gets off the bus fi rst and last. 132 Competence in transportation issues is important for every therapist.

THERAPISTS NEW TO THE EDUCATIONAL ENVIRONMENT

Many school-based physical therapists begin their careers by working in adult or other pediatric settings. Upon entering the educational environment, those who are parents enjoy the benefi t of having the same school hours and vacation schedules as their children. Therefore, it is not uncommon for experienced therapists to seek employment in school settings with little or no background in pediatrics, and lacking an understanding of the unique requirements of working under IDEA. Therapists who are new to school practice must immediately learn the rules and regulations of IDEA as outlined in this chapter and as available from the suggested websites and references. In addition, they must be aware of individual state education laws, special education laws, and their state physical therapy practice act. It is the therapists ’ responsibility to be knowledgeable of the laws that govern practice in schools, just as they should know the rules for reimbursement and practice in hospital settings. In this era of limited resources, administrators have been known to say that services are not appropriate for a child with a disability because they do not want to pay for such a service. They might also say that because a therapist is not available, therapy cannot be recommended in the IEP. Of course, this is incorrect, but most parents and many

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Box 30-5 Competencies for School-Based Physical Therapists

CONTENT AREA 1: THE CONTEXT OF THERAPY PRACTICE IN SCHOOLS

1. Describe competencies for school-based physical therapists. a. Diagram the functional and supervisory organization of

the education system served by the therapist. b. Identify the goals and outcomes of the educational

curriculum from preschool through high school. c. Demonstrate an understanding of the eventual goals of

independent living and working. d. Apply knowledge of the outcomes-based education

curriculum. 2. Demonstrate knowledge of federal (for example, IDEA,

Rehabilitation Act of 1973, ADA), state, and local laws and regulations that affect the delivery of services to students with disabilities a. Discuss the implications of the laws (national, state and

local). b. Apply the guidelines of federal, state, and local

regulations. c. Identify and use information sources for federal, state,

and local legislation and regulation changes. d. Discuss and demonstrate professional behavior regarding

ethical and legal responsibilities. e. Discuss professional competencies as defi ned by

professional organizations and state regulations. f. Advocate to support services related to educational

entitlements. 3. Apply knowledge of the theoretical and functional

orientation of a variety of professionals serving students within the educational system a. Initiate dialogue with colleagues to exchange professional

perspectives. b. Disseminate information about the availability of therapy

services, criteria for eligibility, and methods of referral. c. Describe evaluations and interventions commonly used

by psychologists, diagnostic educators, classroom teachers, speech and language pathologists, adaptive physical educators, nurses, physical therapists, occupational therapists, and professionals in other education and health-related disciplines.

4. Assist students in accessing community organizations, resources and activities. a. Demonstrate awareness of cultural and social differences

that relate to family and student participation in the education program.

b. In collaboration with the educational team, develop a plan for transition into community activities or adult services.

c. Identify the need to make appropriate student referrals to community therapy and recreational. services when school services are not able to meet all of the child ’ s needs.

d. Include the family in the educational process. e. Serve as a resource to family and other team members

for information and appropriate community resources (medical, educational, fi nancial, social, recreational, and legal).

CONTENT AREA 2: WELLNESS AND PREVENTION IN SCHOOLS

1. Implement school-wide screening program with school nurse, physical education teacher, and teachers. a. Apply knowledge of risk factors affecting growth,

development, and learning. b. Identify the etiology, signs, symptoms, and classifi cations

of common pediatric disabilities. c. Identify established biological and environmental

factors that affect children ’ s development and learning.

d. Select, administer, and interpret a variety of screening instruments and standardized measurement tools.

2. Promote child safety and wellness using knowledge of environmental safety measures. a. Maintain CPR certifi cation. b. Institute an environmental hazards and accident

prevention plan. c. Recognize child neglect and abuse.

CONTENT AREA 3: TEAM COLLABORATION

1. Form partnerships and work collaboratively with other team members, especially the teacher to promote an effective plan of care. a. Demonstrate effective communication and interpersonal

skills. b. Refer and coordinate services among family, school

professionals, medical service providers, and community agencies.

c. Implement strategies for team development and management.

d. Develop mechanism for ongoing team coordination. 2. Function as a consultant.

a. Identify the administrative and interpersonal factors that infl uence the effectiveness of a consultant.

b. Implement effective consultative strategies. c. Provide technical assistance to other school team

members, community agencies, and medical providers.

3. Educate school personnel and family to promote inclusion of the student within the educational experience. a. Assist school administrators with development of policy

and procedures. b. Provide orientation to teachers and classroom aides. c. Conduct in-service sessions. d. Develop informational resources.

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Box 30-5 Competencies for School-Based Physical Therapists—cont’d

4. Supervise personnel and professional students. a. Apply effective strategies of supervision. b. Monitor the implementation of therapy recommendations

by other team members. c. Establish a student clinical affi liation. d. Formally and informally teach or train therapy staff.

5. Serve as an advocate for students, families, and school. a. Attend public hearings. b. Serve on task force or decision-making committees. c. Provide necessary information to support student rights. d. Actively participate in IEP process.

CONTENT AREA 4: EXAMINATION AND EVALUATION IN SCHOOLS

1. Identify strengths and needs of student. a. Interview student, family, teachers, and other relevant

school personnel. b. Gather information from medical personnel and records. c. Observe student in a variety of educational settings.

2. Collaboratively determine examination and evaluation process. a. Designate appropriate professional disciplines. b. Identify environments and student activities and routines. c. Select instruments. d. Establish format for conducting examination. e. Inform and prepare the student.

3. Determine student ’ s ability to participate in meaningful school activities by examining and evaluating: a. Conduct of formal naturalistic observations to determine

level of participation and necessary assistance and adaptations;

b. Functional abilities, including gross motor, fi ne motor, perceptual motor, cognitive, social and emotional, and ADL;

c. Impairments related to functional ability, including musculoskeletal status, neuromotor organization, sensory function, and cardiopulmonary status.

4. Utilize valid, reliable, cost-effective, and nondiscriminatory instruments for: a. Identifi cation and eligibility; b. Diagnostic purposes; c. Individual program planning; d. Documentation of progress.

CONTENT AREA 5: PLANNING

1. Actively participate in the development of the Individualized Education Plan. a. Determine eligibility related to a student ’ s educational

program. b. Accurately interpret and communicate examination

fi ndings collaboratively with family, student, and other team members.

c. Discuss prognosis of student performance related to curricular expectations.

d. Discuss and prioritize outcomes related to student ’ s educational needs based on current and future environmental demands and student and family preferences and goals.

e. Offer appropriate recommendations for student placement and personnel needs in the least restrictive educational setting with intent to serve children in inclusive environments.

f. In collaboration with the team, determine how therapy can contribute to the development of an individualized educational program (IEP), including: i. Meaningful student outcomes; ii. Functional and measurable goals and objectives; iii. Therapy service recommendations; iv. Specifi c intervention methods and strategies; v. Determination of frequency, intensity, and duration.

g. Develop mechanism for ongoing coordination and collaboration regarding: i. Implementation of the IEP; ii. Updates or modifi cations of IEP; iii. Transition planning and implementation of the

transition plan; iv. Interagency activities.

CONTENT AREA 6: INTERVENTION

1. Adapt environments to facilitate student access to and participation in student activities. a. Recommend adaptive equipment, assistive technology,

and environmental adaptations. b. Monitor adaptive equipment, assistive technology, and

environmental adaptations. c. Be able to instruct student and other team members in

the appropriate use of adaptive equipment and assistive technology.

d. Identify sources for obtaining, maintaining, repairing, and fi nancing adaptive equipment, assistive technology, and environmental adaptations.

2. Use various types and methods of service provision for individualized student interventions. a. Employ direct, individual, group, integrated, consultative,

monitoring, and collaborative approaches; b. Develop generic instruction plans and intervention plans

that select and sequence strategies to meet the objectives listed on the student ’ s IEP.

3. Promote skill acquisition, fl uency, and generalization to enhance overall development, learning, and student participation. a. Use creative problem-solving strategies to meet the

student ’ s needs.

Continued

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From Effgen, S. K., Chiarello, L., & Milbourne, S. (2007). Updated competencies for physical therapists working in schools. Pediatric Physical Therapy, 19, 266 – 274.

Box 30-5 Competencies for School-Based Physical Therapists—cont’d

b. Explain the basic motor learning theories, and relate them to therapy education programs.

c. Address neuromuscular, musculoskeletal, sensory processing, and cardiopulmonary functions that support motor, social, emotional, cognitive, and language skills.

4. Embed therapy interventions into the context of student activities and routines. a. Implement appropriate positioning, mobility,

environmental, and ADL strategies into curriculum, classroom schedule, and routines.

b. Develop a matrix integrating objectives, routines and activities, and strategies.

CONTENT AREA 7: DOCUMENTATION

1. Produce useful written documentation by: a. Writing reports in commonly understood and meaningful

terms; b. Maintaining timely and consistent records; c. Concisely summarizing relevant information; d. Sharing records with family and other team members.

2. Collaboratively monitor and modify student ’ s IEP. a. Establish a mechanism for and record ongoing

communication with family and other team members. b. Establish a plan of action for re-evaluation. c. Schedule pre-established team meetings to review

student progress over the course of the school year. 3. Evaluate and document the effectiveness of therapy

education programs. a. Establish baseline of student ’ s level of participation and

functional status. b. Collect ongoing data on the student ’ s progress toward

stated IEP outcomes. c. Summarize data to determine student ’ s progress.

CONTENT AREA 8: ADMINISTRATIVE ISSUES IN SCHOOLS

1. Demonstrate fl exibility, priority setting, and effective time management strategies.

2. Obtain resources and data necessary to justify establishing a new therapy program or altering an existing program.

3. Serve as a leader. a. Integrate knowledge of education, health, and social

trends that affect therapy services. b. Identify and educate others on the overall roles,

responsibilities, and functions of therapy services. c. Identify and differentiate characteristics of alternative

approaches for resolving needs of therapy services.

d. Identify the administrative needs of the therapy service within the school setting.

e. Serve as a role model for other therapists regarding professional responsibilities.

4. Serve as a manager. a. Develop and analyze job descriptions for therapists. b. Implement a recruitment, orientation, mentorship, and

professional development program for therapists and staff.

c. Develop and implement policies and procedures to guide therapy services.

d. Establish therapy caseloads and staffi ng needs. e. Evaluate the performance of therapy personnel. f. Plan and implement a therapy quality assurance plan and

program evaluation. g. Participate in the assessment of school facilities and

educational activities. h. Make recommendations, especially related to ensuring

accessibility and reasonable accommodations to school environments.

i. Identify and use appropriate school, home, community, state, and national resources, especially funding sources.

j. Demonstrate the ability to plan and manage a budget for the therapy component of services.

CONTENT AREA 9: RESEARCH

1. Demonstrate knowledge of current research related to child development, medical care, educational practices, and implications for therapy. a. Conduct a literature review. b. Seek assistance of experienced researchers in interpreting

published research. c. Critically evaluate published research.

2. Apply knowledge of research to the selection of therapy intervention strategies, service delivery systems, and therapeutic procedures. a. Use objective criteria for evaluation. b. Justify rationale for clinical decision-making. c. Expand clinical treatment case reports into single-subject

studies. 3. Partake in program evaluation and clinical research activities

with appropriate supervision a. Identify research topics. b. Secure resources to support clinical research. c. Implement clinical research projects. d. Disseminate research fi ndings.

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CASE STUDY

“ Adrianna ” This case study highlights some of the issues and challenges that are frequently encountered by physical therapists in school-based prac-tice: (1) promotion of the student ’ s participation in the educational program in the least restrictive environment; (2) collaboration with other team members and physicians; and (3) fl exibility in selecting models of service delivery based on the student ’ s goals. Adrianna, a child with cerebral palsy (CP), is presented. The format integrates principles outlined in the Guide to Physical Therapist Practice ( “ The Guide ” ) 2 and the World Health Organization ’ s International Classifi ca-tion of Functioning, Disability and Health (ICF). 131 The Guide provides a framework for physical therapist practice, while the ICF focuses on participation and activities, which are the focus of school-based therapy services, incorporating environmental and personal factors along with body structures and functions. Evaluation includes the elements outlined in the 2001 edition of the Guide , but the order of presentation follows the ICF model, fi rst focusing on participation in the educational program and school activities, before identifying associated impairments in body structures and functions. As noted previously, the revision of the Guide that is currently under way will be based on the ICF model. 4

This case study takes place in a suburban school district with more than 9000 students: seven elementary schools (preschool to grade 5, housed in nine buildings), two middle schools (grades 6 to 8), and one high school (grades 9 to 12). The district employs one full-time physical therapist, two occupational therapists (each works 4 days per week), and four certifi ed occupational therapist assistants (three full time and one who works 2 days per week). The physical and occu-pational therapists report to a supervisor who is a special educator; therefore, the therapists have often needed to inform him about issues related to their disciplines. The physical and occupational therapists have an excellent collaborative relationship.

Adrianna is a young girl with spastic diplegic and ataxic cerebral palsy (CP). She is classifi ed at Level I on the Gross Motor Function Classifi cation System 96 ; she walks independently at home, at school, outdoors, and in the community, and she performs gross motor skills with limitations. Adrianna lives in a two-story house with her biologi-cal parents and her 4-year-old brother, who is developing typically. Her father is the fi tness manager at a large gym, and her mother works part-time. The product of an uneventful 41-week pregnancy and long labor that included the presence of meconium in the amni-otic fl uid, she was delivered by emergency cesarean section for fetal distress. During the birth process, the umbilical cord was wrapped around her neck and arm. Her birth weight was 8 pounds 2 ounces. Apgar scores were 2, 7, and 5 at 1, 5, and 10 minutes after birth. Adrianna was discharged home at 5 days of age.

Motor development was delayed. Her parents reported that Adri-anna began to sit unsupported at about 12 months, crawl at about 15 months, and walk independently at about 28 months. Beginning at 22 months of age, she received home-based physical therapy twice

a week for 60-minute sessions through an early intervention program. At 25 months, Adrianna was diagnosed with cerebral palsy.

On her third birthday, Adrianna entered the district ’ s preschool program for children with disabilities, where she received physical, occupational, and speech-language therapy, each in two 30-minute sessions per week. She also participated in the preschool physical education class with her classmates, in one 30-minute session per week. Physical therapy services were delivered primarily in the context of her preschool program: in her classroom, in the physical education class, on the playground, and in her mobility around the school. Occasionally, the therapist removed her from the usual dis-tractions to work on targeted skills. Adrianna had an extraordinarily diffi cult adjustment to preschool because she was unwilling to sepa-rate from her mother. She cried vigorously on a daily basis for the fi rst 3 months of school and thereafter each time her mother departed. Gradually, Adrianna became a joyful student, except when encounter-ing unfamiliar situations, such as assembly programs with the entire school community and the preschool graduation ceremony.

At 5 years and 6 months of age, Adrianna underwent a compre-hensive team re-evaluation in preparation for entering kindergarten. Contributing to the process were the school psychologist (who served as case manager), learning consultant, social worker, physical thera-pist, occupational therapist, speech-language pathologist, and her parents.

Physical Therapist Re-evaluation for IEP: Transition to Kindergarten

In preparation for the re-evaluation, the physical therapist reviewed existing records and discussed Adrianna ’ s functional strengths and challenges with her mother, her classroom teacher, her physical edu-cation teacher, and her school occupational therapist. Incorporating the elements outlined in the Guide 2 and the ICF model, 131 the evalu-ation included observation in a variety of school settings, clinical examination, and administration of the School Function Assessment (SFA) 23 and the Gross Motor Function Measure (GMFM). 109 Seating, Mobility, and Gross Motor Play at Preschool During circle time in preschool, Adrianna and her classmates sit on preschool-size chairs. When sitting on the fl oor for play, Adrianna assumes a crossed-legged ( “ tailor-sit ” ) position. She transfers from the fl oor to standing by rising from half-kneeling onto her right leg without using her hands for support; she needs to push with one hand on her knee when rising onto her left leg.

Adrianna walks independently and without assistive devices for all preschool activities, for distances of several hundred feet, on level indoor surfaces, uneven outdoor terrain, and ramps without a railing. She falls an average of once or twice per school day. Falls are variably attributable to loss of balance, insuffi cient ankle dorsifl exion for toe clearance, or inattention to obstacles in her way. Adrianna runs for distances of at least 50 feet. She falls occasionally when running,

Continued

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especially on uneven outdoor terrain, and she does not keep pace with her peers when walking around the school, on the playground, or during fi re drills. However, her friends wait patiently for her and are eager to help her when she falls.

Two months ago, Adrianna received new supramalleolar orthoses (SMOs) to replace her previous hinged ones. She wears them at school but rarely at home. The new design is fi xed, with trimlines that are lower than her previous SMOs; the footplate extends only to the base of the metatarsal heads to allow for push-off during gait. With verbal cues, Adrianna can produce a heel-toe gait for distances of about 20 feet, rarely sustaining it for longer distances. She expresses displeasure at having to wear orthoses, stating that she wants to wear shoes like those of her classmates.

This past year, Adrianna required very close supervision and occa-sional minimal assistance to negotiate stairs and bus steps; now she does so with greater safety and confi dence, requiring continued supervision but without physical assistance. Although Adrianna does not need to access stairs during a typical preschool day, the school physical therapist incorporated stair climbing into intervention ses-sions during her fi nal preschool year, in anticipation of her transition to kindergarten, where she will need to use stairs. With one hand on a railing, Adrianna walks both up and down stairs using a reciprocal pattern. She no longer needs reminders to advance her hand on the railing before moving her feet to keep her center of gravity over her feet. Without holding a railing and with close supervision to minimal assistance for balance, Adrianna can walk up four or fi ve steps recip-rocally and the remaining steps nonreciprocally, leading with either foot; she walks down stairs nonreciprocally, usually leading with the left foot. Adrianna progressed this year to walking up and down bus steps reciprocally, with supervision and holding both railings. She is able to negotiate curbs, sometimes holding one railing but often without holding a railing.

Adrianna has learned to jump up independently to a height of about an inch, generally landing on both feet without losing her balance. She can independently jump forward a distance of about 8 inches but cannot jump backward. With supervision, Adrianna can jump off a 6-inch-high step, usually reaching for the railing and needing to take several steps to recover her balance. Adrianna is now able to perform three consecutive jumping jacks slowly, stopping between them to recover her balance and to maintain appropriate sequencing. She has learned this year to hop once on her right foot with both hands held for minimal assistance, but she is unable to hop on her left foot. Standing at about 8 feet from the therapist, Adrianna can accurately throw or kick an 8.5-inch gym ball in about three of fi ve trials. She can catch a ball with both hands and by trapping it with her body, only when focusing on the task and positioning her hands just right, about once in fi ve trials. Home and Community Recreational Activities Adrianna enjoys riding her tricycle at home; she independently climbs on and off and pedals it around her neighborhood, steering

accurately. For the past year, she participated in a class for children with disabilities at a climbing gym. Previously, she took part in hip-potherapy and aquatic therapy. Systems Review Although the focus of a school-based evaluation is on mobility in the educational environment, a systems review can help to identify impairment-level issues that may affect school function. Cardiovascular and Pulmonary. No problems are evident in Adrian-

na ’ s cardiopulmonary endurance during functional activities. Integumentary. Skin integrity is intact, although it should be moni-

tored closely during the fi rst few days of wearing new orthoses. Musculoskeletal. Adrianna demonstrates mild weakness in her trunk

and extremities, with isolated motion at all joints. Range of motion is within functional limits throughout.

Neuromuscular. A moderate degree of spasticity is present in the left biceps and triceps and in the gastrocnemius/soleus of both lower extremities, with minimal spasticity in the right biceps and triceps, as well as in the hamstrings and quadriceps. Hypotonicity is noted in the neck and trunk. Isolated motion is present at all joints, although coordination is impaired. Gross estimation of Adrianna ’ s strength is 4/5 in the upper extremities, 3/5 in the trunk muscu-lature, and 4/5 in the lower extremities.

Body Functions and Structures Qualitative observations of Adrianna ’ s motor performance during the preschool program indicate problems with motor control, including initiation, timing, sequencing, coordination, modulation, reciprocal inhibition, and force generation of movement, as well as diffi culties with anticipatory and reactive postural control. 94,129 The systems review is consistent with these observations regarding range of motion, muscle tone and performance, and orthotic devices. Although Adrianna can accomplish many of the tasks required of her during the school day and can complete many of the test items on some motor assessments, her quality of movement is not refi ned and she tires more easily than her peers. Gross Motor Function Measure The Gross Motor Function Measure (GMFM) 109 was administered by the physical therapist to assess components of motor activities that were described more globally by the SFA. It was designed for children with cerebral palsy and comprises skills that are considered achiev-able by children at 5 years of age who are developing typically. The measure was completed in about 45 minutes. Adrianna earned maximum scores in these dimensions: (A) Lying and Rolling; (B) Sitting; and (C) Crawling and Kneeling. Her diffi culties are in the dimensions of (D) Standing; and (E) Walking, Running, and Jumping. Adrianna ’ s Goal Total Score (dimensions D and E) was 82%, and her Total Score was 93%. Areas of diffi culty included unilateral stance, rising from the fl oor through half-kneeling, hopping, jumping forward, jumping off a step, stepping over a stick at knee level, and negotiating stairs with alternating feet.

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CASE STUDY “ ADRIANNA ”

EXAMINATION DECISIONS

Gross Motor Function Measure The decision to use the Gross Motor Function Measure (GMFM) 109 was supported by a study by Bjornson, Graubert, Buford, and McLaughlin 12 of 37 children with spastic diplegia. The GMFM administered at baseline, 12, and 24 months showed high correlations ( P < .001) with video evaluations for all dimensions except Lying/Rolling. Trahan and Malouin 119 studied 50 children with quadriplegia, hemiplegia, and diplegia at baseline, 4, and 8 months. For the three groups combined, they found changes in GMFM scores ( P < .05) in each dimension and in total scores at both 4 and 8 months, although the magnitude of changes varied among the groups. Both studies concluded that the GMFM is an effective tool for measuring change over time in the gross motor performance of children with CP. School Function Assessment The choice of the School Function Assessment (SFA) 23 was based on research by King et al. 73 that found it to be an appropriate tool for measuring important functional skills in school settings. In a validity study of 64 children, 17 of whom had CP, Hwang, Davies, Taylor, and Gavin 62 measured convergent validity scores that ranged from .56 to .72, when comparing SFA scores with those of the Vineland Adaptive Behavior Scales. Construct validity scores demonstrated signifi cant differences between children with CP and their peers without disabilities.


The decision to recommend a rigorous functional physical training program was supported by a study by Gorter et al. 51 of 13 children with CP (age 8 to 13 years) at Gross Motor Function Classifi cation System GMFCS 96 Levels I and II. The authors found improvements in aerobic endurance, walking distance, and walking velocity after a program of rigorous activity in two 30-minute sessions per week for 9 weeks. Valvano 126,127 promoted activity-focused interventions for children with CP, consisting of structured practice and repetition of functional motor tasks. Damiano 25 advocated comprehensive physical activity programs, citing these

important reasons: “ (1) preventing secondary musculoskeletal impairments and maximizing physical functioning, (2) fostering the cognitive, social, and emotional development of the child, and (3) developing, maintaining, and perhaps restoring neural structures and pathways ” (p. 1535).

Increasing muscle strength can contribute to improved motor control and function, particularly improved gait. 35 Practice of motor skills should be structured to promote learning through consideration of part versus whole practice, blocked versus random practice, massed versus distributed practice, schedules of feedback, knowledge of performance, and knowledge of results. 113 Intervention that is embedded in natural contexts is associated with a higher degree of motivation than activities performed in isolation, resulting in more effective acquisition, retention, and transfer of targeted motor skills. 17 The problem solving of novel skills in natural settings promotes generalization to a variety of real-life situations. 113

PATIENT/FAMILY PREFERENCES

Orthoses, particularly ankle-foot orthoses (AFOs), are commonly accepted as a component of intervention for individuals with CP. 60,94 However, many children and adolescents reject them in their desire to conform to their peers. Sometimes parents express more dissatisfaction with the orthoses than their children do. Intervention that is not acceptable to the child or the parents will not be used and, therefore, will be of no benefi t. 33 Evidence-based practice emphasizes the context of the individual client, including values and personal circumstances. 53 Hence, acceptability of the proposed intervention by the child and caregivers is an essential consideration. Some parents and children opt for less-obtrusive supramalleolar orthoses (SMOs), although their minimal ability to assist in dorsifl exion can result in frequent falls.

Adrianna ’ s parents have an interest in exercise and are motivated to assist her in improving her motor skills. In a systematic review of the evidence, Mattern-Baxter 82 found that body weight – supported treadmill training (BWSTT) may contribute to improvements in gait velocity, gait endurance, and gross motor function among children with CP. However, two other systematic reviews were inconclusive. 26,90 Dieruf and colleagues 31 demonstrated improvements in health-related quality of life indicators following a brief program of intensive BWSTT.

Continued

Diagnosis

Although not typically included in documentation in the school setting, according to the Guide , 2 Adrianna ’ s physical therapy intervention is addressed through Preferred Practice Pattern 5C: Impaired Motor Function and Sensory Integrity Associated With Nonprogressive

Disorders of the Central Nervous System — Congenital Origin or Acquired in Infancy or Childhood. Adrianna exhibits impaired muscle performance (strength, endurance, and tone) and impaired motor control (balance and coordination), resulting in limitations in her ambulation on all surfaces and in her performance of gross motor skills in her physical education class and on the playground.

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Prognosis

Adrianna should continue to demonstrate improvement in her mobil-ity and gross motor skills; however, she will remain challenged by activities that require balance and coordination. Although she works hard to keep pace with her classmates in her physical education class, she may become frustrated as the discrepancy widens between her skill level and that of her peers.

IEP Meeting: Transition to Kindergarten

The IEP meeting was conducted during Adrianna ’ s fi nal month of preschool. In attendance were her parents, her classroom teacher, a regular education teacher, the school psychologist (her case manager), learning consultant, school social worker, physical therapist, occupa-tional therapist, and speech-language pathologist. At her age, it was not considered appropriate for Adrianna to attend the meeting, although older students would be invited.

Adrianna has a specifi c learning disability, and her high level of distractibility impedes her academic achievement. Her speech, like her motor skills, is ataxic; it is slow, dysarthric, and of low volume, with the potential to hinder her social relationships. However, she interacts well with her classmates and has many friends.

Adrianna demonstrates fair coordination in both hands. She is right-hand dominant. To pick up small objects, she often uses a lateral grasp or raking of her fi ngers instead of a pincer grasp. She is able to hold a crayon with a tripod grasp but requires an adaptive grip when using a pencil. Handwriting is slow and laborious, so it takes her much longer than her classmates to complete assignments. In future years, she is likely to rely on computer skills. Adrianna can generally remove her own clothing, orthoses, shoes, and socks but has diffi culty with some areas of dressing, such as opening and closing small buttons and tying shoes. She is working on these skills with her school occupational therapist.

At the IEP meeting, several team members expressed concern about Adrianna ’ s safety on stairs. Her neighborhood school houses kindergarten and some fi rst-grade classes in a two-story building with neither ramps nor elevator. Students generally access both fl oors during the school day. The adjacent “ sister building ” houses grades 1 through 5; it is a modern one-story building with barrier-free design. The case manager suggested assigning Adrianna to one of the district ’ s fi ve accessible elementary schools for kindergarten and returning her to her neighborhood school (the accessible building) for fi rst grade.

The physical therapist advocated for Adrianna to be placed in her neighborhood school for kindergarten, the least restrictive environ-ment, with the accommodation of adult supervision on stairs. This would also provide Adrianna with multiple daily opportunities to negotiate stairs. The therapist ’ s rationale was based on evidence of the importance of a large number of practice trials when learning a motor skill. 71,78,113,126,127

The team agreed to assign Adrianna to a regular-education kin-dergarten class in her neighborhood school with in-class support for

reading and mathematics. Related services specifi ed on the IEP included physical, occupational, and speech-language therapy, each through a combination of integrated and pull-out models of service delivery. She will also participate with her class in two 30-minute sessions per week of physical education, as part of the regular educa-tion program. The IEP team discussed Adrianna ’ s social and emo-tional adjustment to kindergarten, in view of her initial fear of new people and environments. The school physical therapist, who serves students throughout the district, would be the only familiar adult on the fi rst day of kindergarten. For this reason, the physical therapist assured Adrianna, her parents, and the rest of the team that she would be there to greet Adrianna on the fi rst day of school and to assist her in adapting to her new environment.

Goals Contributed by School Physical Therapist

Goals were developed collaboratively by the IEP team. The physical therapist reported that Adrianna stated, “ I want to walk like everybody else and I don ’ t want to fall anymore. ” The following mobility-related goals were identifi ed by the team; the school physical therapist will be among those responsible for assisting Adrianna in achieving them, in one school year. Direct physical therapy services will be provided in two 30-minute sessions per week. (Please note that there is wide variation across the nation regarding the quantity of services provided. Adrianna lives in the northeastern United States, where higher frequencies of service delivery have been reported.) 69 • Adrianna will keep pace with her classmates when walking inde-

pendently without falling for distances of at least 300 feet, on level indoor surfaces and uneven outdoor terrain, either with or without her SMOs, in four of fi ve trials.

• Adrianna will walk independently up and down fi ve steps with one hand on a railing and using a reciprocal pattern, in four of fi ve trials. (In the school she will attend for fi rst grade, there are fi ve steps between the two levels of the building, with an adjacent ramp. When walking independently around the building, she can use the ramp; when supervised, she can practice negotiation of stairs.)

• Adrianna will independently walk through the lunch line, place each food and drink item on her tray, and walk with it to her table — a distance of at least 50 feet — in four of fi ve trials.

• Adrianna will independently perform locomotor skills in her physi-cal education class, including jumping, galloping, hopping, skip-ping, and jumping jacks, in four of fi ve trials.

Kindergarten

At the beginning of Adrianna ’ s kindergarten year, the school physical therapist performed an ecologic assessment through observation in the classroom, on the playground, in the lunchroom, and during physical education class, along with discussions with the classroom teacher and physical education teacher. To promote motor learning,

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the therapist asked the staff to closely supervise her walking up and down stairs, while providing physical guidance only when neces-sary. 113 Adrianna adjusted well to the physical demands of attending a two-story school. After crying frequently during her fi rst several weeks of kindergarten, she has become an enthusiastic participant in the program. Adrianna enjoys climbing on the outdoor playground equipment, where she is remarkably undaunted by her diffi culties with some of the activities, described below. She tries to participate fully in her physical education class, although she is unable to perform the higher-level motor skills. School Function Assessment During her fi rst few weeks of kindergarten, the fi ve mobility-related domains of the School Function Assessment (SFA) were again admin-istered by the school physical therapist in consultation with her class-room teacher. The SFA measures skills that promote participation in the natural settings of the student ’ s educational program. Mobility domains are in the categories of Activity Performance, Physical Tasks: Travel (19 items), Maintaining and Changing Positions (12 items), Recreational Movement (11 items), Manipulation With Movement (16 items), and Up/Down Stairs (6 items). In the Travel domain, Adrianna shows inconsistent performance in the following tasks: moving on uneven surfaces (e.g., lawns, gravel, doorsills); maneuvering around ruts, holes, and other dangerous surfaces; and moving on slippery surfaces. In Recreational Movement, she demonstrates inconsistent performance in catching a playground ball; running without falling, making changes in direction and speed; throwing and catching a small ball; and playing games involving hitting a target. In Manipula-tion With Movement, Adrianna is inconsistent in carrying a tray con-taining more than one item without spilling or dropping things and in safely carrying fragile objects or liquids in open containers. In Up/Down Stairs, she is inconsistent in walking up and down a fl ight of stairs at regular speed, with or without carrying an object. In all other areas, her performance is fairly consistent.

Plan of Care

Coordination, Communication, and Documentation The school physical therapist communicates frequently (in person, by telephone, and by email) with Adrianna ’ s parents, classroom teacher, physical education teacher, occupational therapist, speech-language therapist, and case manager. They discuss her functional strengths, participation restrictions, and activity limitations. Physical therapy progress reports are sent home with each academic report card, twice per school year. Formal parent-therapist conferences occur twice during the school year, during designated conference weeks. Through these modes of communication, the therapist suggests exercises, activities, and accommodations, describes Adrianna ’ s progress toward her goals, refers the family to community recreation programs and other resources, and recommends return visits to the orthotist for modifi cation or fabrication of new orthoses. The physical therapist also sends letters to Adrianna ’ s physiatrist as needed.

Student-Related Instruction During the initial evaluation prior to entry into the district ’ s preschool program, the physical therapist met with Adrianna ’ s parents to discuss her medical history and to check their understanding about CP in general, and Adrianna ’ s condition in particular. Then and sub-sequently, issues related to her function at school are discussed and recommendations provided for home and community physical and recreational activities.

At the annual review, the school physical therapist discussed with Adrianna ’ s parents current evidence for the benefi ts of body weight – supported treadmill training (BWSTT) and provided written materials about this intervention. 31,82 There are no treadmills in any of the dis-trict ’ s elementary schools, but Adrianna has one available to her, because her father works as fi tness manager for a local gym. The family decided to explore the possibility of Adrianna ’ s engaging in a short, intensive treadmill program at her father ’ s gym, supervised by one of her parents and with consultation by the physical therapist. The goal of this intervention would be to promote an increase in the speed of Adrianna ’ s gait over longer distances, to enable her to keep pace with her classmates in her mobility around the school. 82

At the beginning of each school year and thereafter as appropriate, the physical therapist meets with Adrianna ’ s classroom teacher, physical education teacher, and any other school staff member involved in her educational program, to discuss her functional strengths and challenges and to recommend appropriate accommodations. Procedural Interventions School-based direct physical therapy services comprise functional activities, with an emphasis on the particular skills that will enhance Adrianna ’ s participation in her educational program. Muscle strength-ening, balance, and coordination exercises are key components. Some intervention sessions are devoted to reinforcing the skills incor-porated in her physical education class, such as jumping, galloping, hopping, skipping, and ball skills. Others focus on walking and running throughout the school environment with goals of reducing the frequency of falls and improving her negotiation of stairs. Although on rare occasions the therapist works with Adrianna indi-vidually, services are usually conducted with her classmates, in a small group or in the context of her physical education class, outdoor recess, or lunch, or during her mobility around the school. In these natural settings with her peers, she is highly motivated to participate, and they are eager to be chosen, contributing to her positive view of the intervention. Physical Education Class Early in the school year, Adrianna had diffi culty with some of the gross motor activities in her physical education class. The physical therapist met with the physical education teacher periodically, both formally and informally, to discuss accommodations and strategies to promote Adrianna ’ s participation. Physical therapy intervention sessions often focus on the areas identifi ed, such as locomotor (jumping, galloping,

Continued

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hopping, skipping) and ball skills. The physical therapist works with Adrianna on these skills in the context of her physical education class, as well as in smaller groups with one or two of her classmates who are developing typically. She now participates in her physical educa-tion class to a greater extent, with accommodations as needed. Playground Activities Adrianna has made excellent progress in her ability to negotiate the outdoor playground equipment. She is extremely motivated to master increasingly diffi cult skills and then she seeks new challenges. As soon as Adrianna learned to climb independently to the top of the climbing frame and slowly lower herself, she decided that she wanted to learn to climb up and down the mobile rope ladder and slide down the fi re pole, both of which she is now able to do. Adrianna can independently climb on and off a swing and pump her legs to propel it, although she does not swing as high as her peers. She is actively involved in outdoor play with her classmates, although she falls occasionally when running on the wood chips. Classmates include her in their games and are eager to assist her, sometimes even when she is not actually in need of assistance. Rarely do teachers need to intervene.

Transition to First Grade

In preparation for her transition to fi rst grade, the team met to develop Adrianna ’ s IEP. In her neighborhood school, fi rst grade is offered both in the older, two-story building and in the newer one; the team decided to assign her to the barrier-free building. Although she will have fewer opportunities to practice negotiating stairs, she will be able to navigate around the building without adult supervision, promoting her independence. When adult supervision is available, she will work on her stair-climbing goal.

Changes in Episodes of Care and Models of Service Delivery

Adrianna will continue to receive direct school-based physical therapy services for as long as is required to enable her to participate in the educational program. When the team decides that physical education alone is suffi cient, the model of service delivery will be changed to consultation or monitoring. For grades 6 through 12, Adrianna will attend much larger, multistory schools that will present new physical challenges for her, with their stairs, long corridors, outdoor tracks, and multiple playing fi elds. As she prepares to move to the middle school, whether or not she is still receiving direct school-based physi-cal therapy services, it may be appropriate to reassess her mobility within the context of the middle school environment. If endurance and negotiation of stairs remain problematic, the team may decide to resume direct physical therapy. As Adrianna experiences growth spurts, she may present with impairment-level issues, such as reduced range of motion at her knees and ankles, which may adversely affect her mobility and, therefore, may be an indication to resume direct service. At each annual review, or more often if necessary, the IEP team will determine the appropriate level of school-based physical therapy.

The video of Adrianna that accompanies this chapter was fi lmed at the end of her kindergarten year. It shows her engaging with her classmates in physical education, outdoor play, and lunch, as well as negotiating stairs and bus steps. Physical therapy interven-tion has been provided in each of these settings to promote Adrian-na ’ s ability to access, participate, and progress in her educational program.

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In the United States, physical therapy is mandated as part of federally sponsored programs to serve infants, toddlers, children, and youth with disabilities. For preschool- and school-age children, physical therapy is a related service of the IDEA educational program for those children who require special education, or under Section 504 of the Rehabilitation Act. The school setting is not the high-tech, health-focused environment of the modern hospital setting or the therapy-focused environment of the rehabilitation setting. Rather, the educational needs of students are the highest priority. To provide effective services and attain personal satisfaction, therapists must become knowledgeable of the educational milieu, including federal, state, and local laws, and regulations that govern physical therapy in the educational environment.

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