Family-Centered Practices for Young Children with Visual Impairment Early Intervention Training Center for Infants and Toddlers With Visual Impairments

Family-Centered Practices for Young Children with Visual Impairment

Early Intervention Training Center for Infants and Toddlers With Visual ImpairmentsFPG Child Development Institute

Produced in collaboration with R. A. McWilliam and P.J. Winton (2002)

The University of North Carolina at Chapel Hill

Deborah D. Hatton, Ph.D.

July 5, 2007Toronto, Ontario

Best StartOntario Ministry of Children and Youth Services

Early Intervention Training Center forInfants and Toddlers With Visual ImpairmentsFPG Child Development InstituteUniversity of North Carolina at Chapel Hill

ObjectivesAfter completing this session, participants will

1. describe and implement strategies that can be used to build reliable alliances with families and other professionals and to implement family-centered practices.

2.describe and implement strategies to effectively communicate and collaborate with families and other professionals.

3.describe the three types of support that are important for families of young children with visual impairments and explain the advantages of developing an ecomap (a graphic representation of a family’s existing supports).



4. identify three key child outcomes and five key family outcomes that should be considered when providing intervention to young children with visual impairments and their families.

5. complete an ecomap to identify key features of the family ecology that might influence intervention/education.



6. complete a routines based assessment to identify family concerns, priorities, and resources that describe the strategies that members of teams use to effectively communicate and collaborate with families and other professionals.

7. identify functional outcomes for intervention that are tied to sensory assessments, ecomaps, and routines based assessment.

8. describe and implement strategies for successful home visits and consultative visits to child care settings.


Family-Centered Support

• reflects a method of coordinating and delivering assistance, support, and servicesto the families of children with disabilities that enhances their capacity to care for their children.

• is based upon an understanding of the complexity that exists within families and that decisions and services will influence each member of the family and the unit as a whole.


Central Values of Family-Centered Approach

• Emphasizing families’ strengths rather than deficits

• Promoting family choice and control over desired resources

• Developing collaborative relationships between professionals and parents

• Viewing family from a holistic perspective


Establishing Reliable Alliances

The term reliable alliance has been used

by Turnbull and Turnbull (2001) to

describe a dynamic relationship between

families and professionals in which they

experience individual and collective

empowerment by sharing their resources

to make joint decisions.Turnbull & Turnbull, 2001


Eight Obligations Involved in Establishing Reliable AlliancesReliable alliances involve the following eight obligations (Turnbull & Turnbull, 2001, p. 58):

1. Knowing yourself2. Knowing families3. Honoring diversity4. Affirming and building on family strengths5. Promoting family choices6. Affirming appropriate choices7. Communicating positively8. Warranting trust and respect


Responses to Grief

• Early models of the grieving process included sequential stages of shock, denial, anger, depression, and acceptance.

• Today a broader understanding of responses to grief exists. Individuals may sporadically, randomly, or predictably experience sadness, guilt, regret, longing, disbelief, fear, irritability, hopelessness, and powerlessness.


DiversityDiversity refers to differences in individuals and familiesacross a variety of dimensions, including

• culture, language, race, class, disability, age, and gender.

• personal affiliations to religious and political groups or beliefs.

• sexual orientation.

Family culture can affect

• treatment of medical issues.

• primary language spoken within the home.

• literacy activities.

• interactive play (social skills).

• daily routines.Milian & Erin, 2001


Consider Variations Within Cultures

Families vary in their adherence to culturalnorms based on• primary language in home and community.• educational level.• religious affiliation.• country of origin, length of time in U.S.,

degree of acculturation, or current residence.

• income. Santos & Reese, 1999


Cultural Diversity and Visual Impairment

Some cultures• believe that caring for the child is more

important than teaching independence.

• expect adults with blindness/VI to hold only certain jobs or not work at all.

• value oral communication over the written word.

• vary in their gender expectations.

• ascribe special meaning to particular types of visual impairment.

Erin, 2002


Religious Diversity and Visual Impairment

• Some individuals may think that having a visual impairment is retribution for sin.

• For some families, a religious leader or

the head of the family may be the critical

decision maker.

• Some families visit religious healers duringtheir child’s early years.

Erin, 2002

Importance of Collaborating with Families

• Almost all child-level intervention occurs between home visit sessions.

• Almost all interventions can be implemented in the context of family routines and daily activities.

• Infants and toddlers cannot generalize skills that early interventionists model from one visit to the next.

Early Intervention Training Center forInfants and Toddlers With Visual ImpairmentsFPG Child Development InstituteUniversity of North Carolina at Chapel HillR.A. McWilliam August 2004


Components of Collaboration

• Empowering caregivers to meet children’s needs

• Treating caregivers with respect and as full members of the team

• Conferring with specialists and other service providers to develop and implement an integrated and comprehensive intervention plan that can be used across settings in daily routines and activities


Coordinating Services for Young Children with Visual Impairment

1. Coordinating performance of evaluations and assessments

2. Facilitating and participating in development, review, and evaluation of intervention plans

3. Assisting families in identifying available service providers

4. Coordinating and monitoring delivery of available services


Coordinating Services for Young Children with Visual Impairment

5. Informing families of availability of advocacy services

6. Coordinating with medical and health providers

7. Facilitating development of a transition plan to other programs, if appropriate


Four Collaborative Roles for TVIs

1. Supportive - demonstrating concern and caring for others during new and difficult situations

2. Facilitative - assisting the professional development of other team members

3. Informative - providing information and support to other team members

4. Prescriptive - suggesting strategies or resources in response to a request for assistance

Topor, Holbrook, & Koenig, 2000


Support-Based InterventionAn overarching feature of early intervention is

the provision of supports, rather than the

provision of services.

McWilliam and Scott (2001) identified three

primary types of support provided by early

interventionists:

• Emotional support

• Informational support

• Material support


Emotional Support

Emotionally supportive, family-centered practitioners have the following characteristics:• Positiveness

• Responsiveness

• Orientation to the whole family

• Friendliness

• Sensitivity

• Competence with and about children

• Competence with and about communities

McWilliam, Tocci, & Harbin, 1998


Material Support• Families cannot carry out interventions if their

needs for food, shelter, and security are not met.

• Children with VI may require specialized materials, such as low-vision devices, to enhance participation in daily routines.

Examples of Material Support Equipment and supplies Information about resources,

including financial resources


Informational Support

Families with children with visual impairments

may report concerns about the future and

express a need for information about

• child development,

• the child’s visual condition,

• services and resources, and

• specific strategies and skills.

Leyser & Heinze, 2001


Child and Family Outcomes

http://www.fpg.unc.edu/~ECO/


Child OutcomesOverall goal is to enable children to be active

and successful participants in their early

childhood years and in the future.

Three outcomes that reflect achievement of this

goal are:

1. Children have positive social relationships.

2. Children acquire and use knowledge and skills.

3. Children take appropriate action to meet their needs.

ECO Center, 2005


Family Outcomes1. Families understand their children’s

strengths, abilities, and special needs.2. Families know their rights and advocate

effectively.3. Families help their children develop and

learn.4. Families have support systems.5. Families access desired services, programs,

and activities in their communities.

ECO Center, 2005


Responsibilities of Professionals who Provide Specialized Services

for Young Children with VI

• Functional sensory assessments

• Adaptations/accommodations to assure accessibility

• Functional and meaningful intervention that is tied to assessment results, family priorities, and standards and that can be continuously monitored


Collaboration Between Professionals and Families

PowerPoint 7

• Families provide essential information about the assessment of their children.

• Families who are involved in assessment are more likely to understand the process and the results.

• Respect for family values, cultures, and priorities is essential in planning and implementing assessments and intervention.

Smith & Levack, 1996Hatton, McWilliam, & Winton, 2004


Family EcologyFamily ecology refers to the system of informal

supports available to the family that are

depicted graphically by an ecomap.

An ecomap is used to

• identify existing supports, how duplication of efforts might be avoided, and possible gaps that need to be addressed, and

• assist in identifying resources that will be required to achieve functional outcomes.



Routines-Based Assessment

The RBA is a process whereby families

• share their concerns.

• identify priorities for early intervention

within the context of everyday activities

and routines, thereby assuring that

early intervention occurs within natural

environments.


Benefits of the RBA

The routines-based assessment

• emphasizes that intervention is family-centered.

• provides a structure for families to have a

meaningful role in planning.

• generates a list of functional intervention outcomes.

• aids in developing a positive relationship with the family.


Role of the Professional Providing Specialized Services for Children

with Visual Impairment

• Organize an RBA and conduct the interview, if this hasn't already been done

• Participate but not be the primary interviewer

• Train other team members to do RBAs

• Receive the information after the fact


Components of Individual Child and Family Service Plans

1. Statement of current levels of functioning

2. Statement of the family’s resources, priorities, and concerns

3. Statement of the long term and short term goals, criteria, procedures, and timelines

4. Statement of early intervention services, including the frequency, intensity, and method of delivering services


5. Statement of the natural environments in which services will be provided

6. Statement of the projected dates for the initiation and duration of services

7. Identification of the service coordinator

8. Description of the plan for transition to preschool services

Components of Individual Child and Family Service Plans


Key Components of Intervention Plans

• Family’s strengths, concerns, and priorities as derived from the RBA

• Child’s current level of functioning, as determined by sensory assessments, routines based assessment, and transdisciplinary assessment of child


Linking Assessment to Outcomes and Services

• Services on the intervention plan should be related to needs identified during child and family assessment.

• The team should decide on services based upon outcomes—not upon the diagnosis.

• Children may have the same diagnosis, but their unique strengths and needs may prompt different outcomes, based on priorities of the family and

team.


Developing Intervention Plans Should be a Team Effort

• Families are integral members of all teams.• The team agrees upon functional outcomes and the strategies needed to achieve them.• The team identifies the services and service providers that can provide the support needed to achieve the functional outcomes and to implement strategies.• The team determines the timelines for achieving the outcomes. • The team identifies the primary home visitor (and possibly the service coordinator).


Functional Outcomes

For very young children, functionality means

•having meaningful social relationships

•acquiring and using knowledge and skills (engagement),

• taking appropriate action to meet their needs (independence)


Social Relationships

Social development involves

• forming relationships (attachment),

• communicating,

• interacting appropriately,

• adapting to new situations,

• social interactions (parallel, associative, cooperative play), and

• forming friendships.

Social relationships provide motivation and serve as the foundation for learning and competence.


EngagementEngagement refersto the child’s developmentally and contextually appropriate interactions with the environment. To maintainappropriate engagement, children must continuously acquire and use knowledge and skills.


Independence

Independence in• communicating • moving• solving problems• routines• playing• getting along with others• looking after oneselfIndependence promotes confidence and self-esteem.

Independence refers to children’s ability to function with as little assistance from others as possible and requires children to take appropriate actions to meet their needs.


Natural Environments and Children with Visual ImpairmentAlthough provision of services within a child’s natural

environments is the goal, children with visual impairment and their families may also benefit from specialized environments because

• children with visual impairment have unique developmental needs (AER & AFB, 2003).

• the presence of visual impairment can prevent an infant or toddler from accessing the same visual information available to sighted peers; therefore the environment may need to be adapted in order to meet specific needs (Chen, 1999).


Support for Transitions• Identify the possible future settings

• Identify the skills of all people involved in the transition

• Provide the primary interventionist in the new setting with information about the child

• Key personnel who worked with the child before the transition should maintain contact with the new professionals


Major Goal of Home Visits

Provide support that promotes functional outcomes for family and child. Support can be

• informational,

• material, or

• emotional.


Recommended Practicefor Home Visits

• Collaborate with families and with other specialists and service providers.

• Use routines-based intervention to achieve functional outcomes.

• Assure that a team approach with close collaboration is used to support families and children.


Role of Specialists in VI Primary Home Visitor

• Responsible for regular weekly home visits

• Responsible for securing information from specialists and incorporating into integrated strategies for functional outcomes

• Responsible for intervention plan development, implementation, monitoring

• Responsible for transition planning

Consultant

• Identifies priorities from primary home visitor while formulating recommendations related to visual impairment

• Makes joint visits with primary home visitor

• Provides technical assistance to primary

home visitor and direct service to child and family through joint home visits


Additional Resources

For hundreds of resources on family-centered

practices for young children with visual

impairment, go to

http://www.fpg.unc.edu/~edin/Resources/modules/index.cfm

or see Resources section of the website for the

Early Intervention Training Center for Infants

and Toddlers with Visual Impairments at

www.fpg.unc.edu/~edin




http://www.fpg.unc.edu/~edin

Documents

Family-Centered Practices for Young Children with Visual Impairment Early Intervention Training Center for Infants and Toddlers With Visual Impairments