Children and Youth Services Review 31 (2009) 40–46

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Children with disabilities: Problems faced by foster parents☆

Jason D. Brown ⁎, Susan RodgerFaculty of Education, University of Western Ontario, Canada

☆ The authors would like to acknowledge the financialgrant from the Winnipeg Regional Health Authority, anMoraes, L. Bednar, and J. Mayhew. The authors also wishFamily Research Advisory Committee for their guidanceAdvisory Committee included: H. Gammon, T. Mullen, D.Park, E. Peel, B. Ridd, & B. Wiebe. We would also like toshared their time and expertise.⁎ Corresponding author. Faculty of Education, Unive

Western Road, London, Canada N6G 1G7. Tel.: +1 519 663833.

E-mail address: jbrow97@uwo.ca (J.D. Brown).

0190-7409/$ – see front matter © 2008 Elsevier Ltd. Aldoi:10.1016/j.childyouth.2008.05.007

A B S T R A C T

A R T I C L E I N F O

Article history:

A random sample of license Received 21 December 2007Received in revised form 17 April 2008Accepted 11 May 2008Available online 20 May 2008

Keywords:Concept mapFoster careCanadaProblems

d foster parents caring for children with disabilities in a major Canadian city wasasked “what are the problems you encounter fostering a child with a disability?” A total of 85 uniqueresponses were obtained. These responses were grouped together by the foster parents. The groupings byfoster parents were subjected to two statistical analyses, resulting in seven concepts. The concepts includedthe problems associated with obtaining specialized professional services, costs associated with fostering achild with a disability, arranging and maintaining appropriate educational placements and services, dealingwith child's behavioral challenges, having opportunities to engage in self-care, managing multiple roles, anddealing with the health care system. The results were generally consistent with the available literature.However, some differences were noted and suggest relevant topics for future research with foster parents.

© 2008 Elsevier Ltd. All rights reserved.

1. Introduction

Foster parents provide the majority of out-of-home placements forchildren in care. Childrenwith disabilities are overrepresented in childwelfare caseloads (Bruhn, 2003), often remain in care longer, are lesslikely to return to their birth parents, experience more placementdisruptions (Rosenberg & Robinson, 2004), and are at risk forsecondary mental health challenges during adulthood (Anctil,McCubbin, O'Brien, & Pecora, 2007). Tracking outcomes for childrenwith disabilities as they become young adults, compared to their non-disabled counterparts, shows a reduced likelihood of independentliving (Blomquist, 2006), successful social relationships (Batchelor &Taylor, 2005), and employment (Blackorby & Wagner, 1996). Support-ing childrenwith disabilities to attain at least somemeasure of successin these and other outcomes is a responsibility taken on by partner-ships between parents, health, education and child welfare systems.

Parenting a child with disabilities bring with it both rewards andchallenges. Parents have described the positive experiences such aslearning about the children, seeing their strengths and being part oftheir successes (Andersson, 2001; Goetting & Goetting, 1993). Parentshave also described considerable stress in terms of the child's

support of this study through ad the research assistance of S.to thankmembers of the Fosteron this project. Members of theKendel, R. Leoppky, T. Moore, J.thank the foster parents who

rsity of Western Ontario, 11371 2111x88617; fax: +1 519 661

l rights reserved.

behaviour, feelings of incompetence, and frustration with the caresystems (Roach & Orsmond,1999) which requires a special set of skillsand knowledge in addition to those required for parenting in general.For example, parents of children with disabilities see themselvesadvocates; indeed, such advocacy predicts later life success for youngadults with disabilities (Yssel, Engelbrecht, Oswald, Eloff, & Swart,2007), a conclusion supported by results of a study that examinedsuccessful school engagement for adolescents with FASD, whereresearchers reported that parents (a combination of adoptive andfoster parents) identified that the key role for their adolescents inpublicly funded schools was one of advocacy, in order to obtain themost appropriate programs for their children (Duquette, Stodel,Fullarton, & Hagglund, 2006).

It has been noted that the role of a foster parent for a child with adisability can be demanding (Goetting & Goetting, 1993), but there isevidence that children with disabilities also have successful experi-ences in foster care (Laan, Loots, Janssen, & Stolk, 2001). In spite ofsuch evidence, research shows that foster parents are rarelyconsidered as ‘formalized interventionists’ for children with disabil-ities (Leslie et al., 2007). There is very little data on the perspectives ofthe foster parents who care for children with disabilities, and theproblems they themselves face.

Literature on the challenges of foster and adoptive parents whocare for children with disabilities relies heavily on the use ofresearcher-defined constructs to determine the most salient issues.These issues include children's behavioral challenges, dealing withsystems and professionals, preparation and training, opportunities forself-care and respite, social support, and financial support. In thisstudy, we compare the problems identified by foster parentsthemselves, to the available literature. Foster parents in a large,central Canadian city who had cared for a child with a disability in thepast year were asked:What are the problems you face fostering a child

41J.D. Brown, S. Rodger / Children and Youth Services Review 31 (2009) 40–46

with a disability? These data were analyzed using a method calledconcept mapping. Similarities and differences between the fosterparents' experiences and the available literature are discussed.

1.1. Children's behavior

Children with disabilities in foster care may present challenges totheir caregivers due to complex needs (Puddy & Jackson, 2003). Therehas been emphasis placed on the mental health needs of children, andin particular on areas highly represented among samples of children incare such as: internalizing and externalizing behavior (Stein, Evans,Mazumdar, & Roe-Grant, 1996), attachment-related challenges,anxiety and dissociative responses, age-inappropriate sexual behavior,and self-harm (Tarren-Sweeney, 2007). Foster parents report ofbehavioral concerns among children in their care have been associatedwith self-reported stress level (Paley, O'Connor, Frankel, & Marquardt,2006). It has been noted that child conduct and parental capacity areequally important factors to take into account (Pithouse, Hill-Tout, &Lowe, 2002).

1.2. Systems and professionals

High caseloads and caseworker burnout present significantconcerns for families fostering children with disabilities (Jivanjee,1999). Additionally, caregivers experience frustration due to lack ofpost-placement services (Avery, 1999), and fragmented communica-tion between the foster care agency, medical, and education systems(Cain & Barth, 1991; Wells & D'Angelo, 1994). Coordination of thesesystems is needed (Farmer, Dorsey, & Mustillo, 2004). It has beenreported that parents view their own advocacy with the varioussystems as necessary (Gibson, 2003) and draining (Buelow, 2007), inpart because of the insensitivity of systems to the realities for familieswith children who have disabilities (Craven & Lee, 2006; Palladino,2006). Despite these stress points, research with foster parents showsthat when agency social workers providing information and positivefeedback on a job well done, foster parent retention increases (Denby,Rindfeisch, & Bean, 1999).

1.3. Preparation and training

When childrenwith disabilities are placed with foster parents whoare not aware of their particular needs, there is an increased risk fornegative placement outcome (Burry & Noble, 2001). This risk forbreakdown can be related to caregiver perception of needs for a childthat are beyond what they are prepared for (Burry, 1999). When thechild's disabilities are known, an appropriate match to caregivers withparticular strengths – i.e. related education and experience (Hanley,2002) – can be sought (Simms, 1991).

1.4. Self-care and respite

Families fostering children with disabilities report a lack of respite(Mason & Linsk, 2002). Lack of respite, particularly in the case ofchildren with specialized needs, is associated with higher levels ofstress, caregiver burnout and placement breakdown (Burry, 1999;Hazel, 1990). The need for attention to, and involvement in specificself-care activities among foster parents caring for children withdisabilities is high (Banyard, Rozelle, & Englund, 2001).

1.5. Financial and social support

The financial cost of caring for a child with a disability is higherthan the cost of raising a child who does not have a disability (Reilly &Platz, 2004). Children with disabilities may require specializedmedical, educational or psychological services (Reilly & Platz, 2003;Vig & Kaminer, 2002). The cost of these services, transportation, and

the time invested by foster parents require significant financialcommitment when fostering a child with a disability. A lack ofadequate financial reimbursement is a disincentive to fostering(Appathurai, Lowery, & Sullivan, 1986a,b).

It has been noted that foster parents appreciate informal supportfrom other caregivers (Reilly & Platz, 2004). However, the identifica-tion/coordination of (Ray, 2005) and access to informal community-based activities for themselves and their children with disabilities hasbeen reported as a challenge (Buelow, 2007). There is support in theliterature for the need to support parents to support the child(Schorman, Coniega, & Renwick, 2006).

1.6. Concept mapping

Concept mapping blends qualitative and quantitative methodolo-gies. Developed by Bill Trochim (1989a), the method has been appliedto many topics in the area of social services, such as practice modeldevelopment (Donnelly, Huff, Lindsey, McMahon, & Schumacher,2005), assessment procedures (Ryan, Wiles, Cash, & Siebert, 2005),and the identification or policy priorities (Johnsen, Biegel, & Shafran,2000). Concept maps have been used to describe the counsellingalliance (Bedi, 2006), youth development challenges and opportu-nities (Borden et al., 2006), neighborhood factors in intimate partnerviolence (Burke et al., 2005), stress and coping strategies of homelessyouth (Chun & Springer, 2005), residents' sense of community(Herman, Onaga, Pernice-Duca, Oh, & Ferguson, 2005), programparticipation contributors (Perkins et al., 2007), and elements ofgood community care for individuals experiencing mental healthchallenges (van Weeghel et al., 2005).

2. Method

The concept mapping process included six steps (Trochim, 1989b).The first step was to ask an identified group of participants the samequestion. The second step was to remove redundant responses to thequestion, and edit the remainder for clarity. Participants then groupedthe responses together into concepts in the third step. In the fourth stepstatistical analyses were applied to the grouping data, and the re-searchers selected the optimal numberof concepts for thefinalmap. Thefifth step was to label the concepts based on the responses containedwithin each. Finally, in the sixth step, the map was used for its intendedpurpose: a visual representation of the conceptualization process.

2.1. Response generation

The researchers obtained a list of potential participants from theprovincial department of child and family services. This list con-tained the names and telephone numbers of all 2312 licensed (thoseevaluated and approved by the department of child protection)foster parents in a central Canadian province. Only those with a cityexchange (the largest, and capital city with population of approxi-mately 600,000) were retained leaving a total of 954. The list wasrandomized. Participants were contacted by telephone and providedwith a verbal description of the study. Those who consented to par-ticipate in a telephone interview were asked one screening question“have you fostered a child with a disability in the past year?”.

Interviews continued until a point of redundancy, whereessentially the same responses were obtained across five consecu-tive interviews. Foster parents who indicated that they had cared fora child with a disability were interviewed. Each was asked if therewas another parent in the home, and if so, arrangements were madefor follow-up to request participation. Each participant was askedthe open-ended question “What are the problems you encounterfostering a child with a disability?” Each was sent an honorarium forparticipating, and also asked if s/he was willing to group allresponses.

Table 1Family type

One parent 17Two parent 27Total 44

Table 2Parents history fostering children with medical diagnosis

Medical diagnosis Number of parents

Autism 4Fetal alcohol syndrome 35Blind/deaf/medically fragile 12Physical 14Intellectual 22

Table 4Cluster items and bridging values for concept map

Cluster and statement Bridgingindex

Cluster #1 — professionals 0.2230 Fight for counseling services 0.0825 Social workers and professionals want to label children 0.1137 Dealing with social worker burnout and turnover 0.1212 Funding pulled for a particular service 0.1432 Breakdown school placements 0.1727 The daycare wouldn't accept high needs child 0.1845 Not enough help from the social workers 0.1926 Drive across town to take child to school 0.2333 Don't know how to access help 0.241 Less services when became school age 0.2543 School keeps calling 0.2529 Getting basic foster parent rate even though children have medical probs 0.2646 Other parents don't want the child in the classroom 0.285 Can't find respite workers 0.3541 Social workers make decisions for children they hardly know 0.39

Cluster #2 — money 0.4739 Fighting for money for housekeeping 0.3074 Building an extra room on my house for child 0.3675 Can't afford nice clothes, school supplies or music lessons 0.4011 Social workers don't return calls 0.84

Cluster #3 — school 0.3263 Schools don't consider the child's social needs 0.2573 Lack of crisis support 0.2567 No integrated classes for the child in school 0.2754 Advocate with the schools and teachers 0.2957 Juggling work and advocating for the child with the school 0.3134 School and social workers don't listen to foster parents 0.4923 Children are not disabled enough to access special education services 0.84

Cluster #4 — child's behavior 0.204 Foster child doesn't understand the word “no” 0.0028 Holding child all day long 0.0156 Smashed holes in the walls 0.0269 Fighting with siblings 0.0549 Can't give the child too many tasks at a time 0.0642 Attention is very short 0.0662 I want to work outside the home and foster 0.0683 His seizures are scary 0.0772 Hurting other children in the home 0.0879 I can't take all of my children out together 0.0919 Constantly reminding child 0.118 Attending to the child all day 0.1210 Climbing furniture and breaking toys 0.1331 Aggressive towards me and others 0.1481 People abuse them or take their money 0.1568 Can't comfort upset child 0.1521 Child doesn't understand time 0.1684 Mood swings 0.1759 Bad eating habits 0.1913 Child doesn't sleep at night 0.2077 Sexual acting out 0.2085 Embarrassment over public behavior 0.2138 Needs constant help with self care 0.222 Child cries over everything 0.2455 Falls often because of toe walking 0.243 Child runs away in public 0.2514 Child brought head lice into my house 0.3064 Always have to be on them 0.3153 Fire setting 0.3218 Have to leave store because child gets kicked out 0.35

42 J.D. Brown, S. Rodger / Children and Youth Services Review 31 (2009) 40–46

The majority (86%) of participants were female, and about one-thirdwere fosteringwithout another caregiver in the home (see Table 1). Thetype of disabilities present among the children fostered by theparticipants included those with autism, fetal alcohol syndrome,blindness, deafness, or complex health concerns, as well as physical orintellectual disabilities (see Table 2). The parents had been fostering forless thanone to 40 years, and at the time of interviewwere fostering 0 to4 children (see Table 3).

2.2. Response grouping

Following the interviews, participants who had indicated theirwillingness to group responses together (42 of the 44 who wereinterviewed)were contacted. All remainedwilling to participate in thegrouping exercise, and were sent an information package. Eachresponse was printed separately on a slip of paper. A complete set ofresponses, in random order, was provided to each participant.Participants were asked to read through all responses and groupthem together into piles in whatever way made sense to them. Theycould have any number of groups between 2 (more than one) and 84(one less than the total number of responses). Twenty-two groupingswere returned.

2.3. Analysis of groupings

Two statistical procedures were applied to the grouping data. Theresponses were placed on a point map using multidimensionalscaling, and cluster analysis organized the points into concepts.These analyses were performed by the Concept System softwareprogram (Trochim, 1987).

Multidimensional scaling placed each of the responses on a pointmap. Distances between responses on the point map indicated thefrequency with which they were grouped together by participants.Those closer in proximity on the map were more often groupedtogether by participants, and those further away from each other onthe map were less often grouped together by participants. A bridgingindex was calculated for each response, to indicate the degree towhich the response “bridged” or was grouped together withresponses in other areas of the map. Responses with high bridging

Table 3Parents fostering experience

Yearsfostering

Current number of children in44 households

Total numberof children

Total 564 95 2000+Range 0–40 0–4 1–500+Average 12.8 2

71 Stealing at school and in the community 0.3680 Child needs a lot of attention 0.3835 You need to totally plan your life 0.3848 Lack of child's cognitive skills 0.396 Heavy lifting 0.429 Continual losing of items 0.59

Cluster #5 — self care 0.0517 Getting to my own appointments 0.0124 Confined to my home because child is so difficult to lift and transport 0.0347 Finding time to meet several different children's needs 0.05

Table 4 (continued)

Cluster and statement Bridgingindex

Cluster #5 — self care52 Social stigma of an invisible disability 0.0744 Other family members don't understand 0.09

Cluster #6 — multiple roles 0.7840 Your whole life changes 0.6366 Finding time to go to all the medical appointment 0.697 Finding time for myself 0.7270 Keeping track of the medications 0.7882 Consistent discipline and routines all the time 0.8060 Dealing with the biological family 0.8165 I get attached to the children and I find it hard to let them go 1.00

Cluster #7 — medical system 0.4661 Child can't budget or count change 0.1558 Waiting for medical treatments 0.1978 I can't work because of all the appointments 0.3015 Getting information about the child after becoming attached 0.3720 Watch for signs of severe medical problems 0.4022 Not understanding the child's cognitive limitations 0.4076 Wrong diagnosis 0.5150 Back and forth to the hospital several times a week 0.5851 Difficult to find a family doctor because of complicated medications 0.6236 Lack of information about the child's medical history or future plans 0.7316 Fighting to get special equipment 0.76

Table 4 (continued)

43J.D. Brown, S. Rodger / Children and Youth Services Review 31 (2009) 40–46

indices (over 0.75) were often grouped together by participants withresponses appearing in other areas of the map, while responses withlow bridging indices (less than 0.25) were infrequently groupedtogether by participants with responses appearing in other areas ofthe map.

Cluster analysis of the multidimensional scaling data representedthe conceptual domain. Hierarchical cluster analysis (Anderberg,1973; Everitt, 1980) was used to group responses on the map intoclusters, representing concepts. Initially in the analysis, each responseis treated as its own cluster. Clusters are combined, one by one, untilall responses end up in one cluster. Researchers made the decisionabout the most appropriate number of concepts based on conceptualfit of the responses in various cluster solutions, and labeled thembased on the responses contributing most to the uniqueness of eachcluster.

Fig. 1. Conce

3. Results

Therewere 84 unique responses to this question. The responses areshown in Table 4 as sorted by 22 foster parents. The group data wereanalyzed using the Concept System (Trochim, 1987). Concept mapswith 5 to 11 concepts were examined. The decision to select the sevencluster solution, was based on what was the best conceptual andstatistical fit between the statements and the concepts (see Fig. 1).

3.1. Cluster 1: professionals

Statements in this cluster focused on dealing with the providers ofprofessional services to their children. Foster parents described theirchallenges in relation to receiving diagnosis, such as “socialworkers andprofessionals want to label children”, and “social workers makedecisions for children they hardly know”, as well as external barriersto obtaining services such as “the daycare wouldn't accept high needschild”, “less serviceswhenbecameschool age”, the “drive across town totake child to school” and having “funding pulled for a particular service”or “getting basic foster parent rate even though children have medicalproblems”. In addition, parents described several issues related toexperiences with school staff that caused problems, including dealingwith a “school (that) keeps calling”, a “breakdown (of) schoolplacements”, and “other parents don't want the child in the classroom”.Their challenges when dealing with the social services system includedsystemic issues such as “dealing with social worker burnout andturnover”, those related to the workers themselves, including “notenough help from the social workers”, and a lack of resources which leftthem feeling like there was a need to “fight for counseling services”, orlittle chance of taking a break because they “can't find respite workers”.Foster parents also reported that they “don't know how to access help”,and do not know where to start to find it when needed.

3.2. Cluster 2: money

In this cluster, the statements concerned issues related to money.Parents reported that they felt a lack of financial support for fostering,and “can't afford nice clothes, school supplies or music lessons”. Theywere spending time “fighting for money for housekeeping” anddealingwith “social workers don't return calls”. In order to address theneed for more space, parents were taking on the expense of “buildingan extra room on my house for child”.

pt map.

44 J.D. Brown, S. Rodger / Children and Youth Services Review 31 (2009) 40–46

3.3. Cluster 3: school

In this cluster, the statements concerned theproblems facedby fosterparents in having their children's needs met within the educationsystemgenerally, aswell aswithin the local school. Parents reported thatthe “schools don't consider the child's social needs”, and there were “nointegrated classes for the child in school”. They also saw that theirchildren fell through gaps in service when they had “children (who) arenot disabled enough to access special education services”, or thatservices were simply missing, such as a “lack of crisis support”. Therewas a considerable amount of time and effort required by parents to“advocate with the schools and teachers”, which for many meant,“juggling work and advocating for the child with the school”. They alsofelt that the “school and social workers don't listen to foster parents”.

3.4. Cluster 4: child's behavior

Parents reported different problems related to behavioral issues ofthe children they fostered. They described the need to be watchful offoster children and found themselves sometimes “holding child all daylong” or at least “attending to the child all day”, because s/he “needsconstant help with self care”, or because “his seizures are scary”, thepotential for “hurting other children in the home”, physically andemotionally (“sexual acting out”). It was noted that “I can't take all ofmy children out together” because the “child runs away in public”.Parents also reported that they feel “embarrassment over publicbehavior” at times because they “have to leave store because child getskicked out”. Other challenging behaviors included “climbing onfurniture and breaking toys” as well as those resulting in damage tothe home such as “smashed holes in the walls”. Parents also reportedbehavior that was “aggressive towards me and others”, such as“fighting with siblings”.

It was noted that related to “lack of child's cognitive skills”, parentsnoted their “attention is very short” and they “can't give the child toomany tasks at a time”. Related to “mood swings”, they found that“child cries over everything”, and at times they “can't comfort upsetchild”. Although “I want to work outside the home and foster”, theyfelt as through they “always have to be on them”, found themselves“constantly reminding child”, and noticed a “continual losing ofitems”. They also noted that their “foster child doesn't understand theword ‘no’” and the “child doesn't understand time”, so the “childneeds a lot of attention”.

Foster parents indicated that their children have “bad eatinghabits” and disrupted sleep patterns (“child doesn't sleep at night”). Itwas also noted that the children are at risk of injury. For example, achild who “falls often because of toe walking”. Additionally, the carefor children with limited mobility necessitated “heavy lifting”. Fosterparents reported that “you need to totally plan your life” when caringfor a child with a disability. They were also concerned about thechildren's behavior unsupervised outside of the foster home, andproblems such as “fire setting” or “stealing at school and in thecommunity”. Foster parents also mentioned that the children were atrisk of harm from others (“people abuse them or take their money”).

3.5. Cluster 5: self care

In this cluster, the statements focused on foster parents' challengesto getting their own self-care needs met. Parents reported personalchallenges, such as how others viewed their own disabilities and howthey themselves experienced the “social stigma of an invisibledisability”. They found that “other family members don't understand”their particular assets and limitations or how those impact on theirparenting abilities. Foster parents reported that it was also difficult“finding time to meet several different children's needs”, and “gettingto my own appointments”. They also reported being “confined to myhome because child is so difficult to lift and transport”.

3.6. Cluster 6: multiple roles

Statements in this cluster focused on the problems associated withmanaging different roles. Parents reported that “your whole lifechanges” when you foster a child with a disability, and that theystruggle at times “finding time to go to all the medical appointments”for the children, “keeping track of the medications” the children aretaking, maintaining “consistent discipline and routines all the time”,as well as “dealing with the biological family”. In between all of thesedemands, it was difficult “finding time for myself”. It was also notedthat “I get attached to the children and I find it hard to let them go”.

3.7. Cluster 7: medical system

In this cluster, statements focused on challenges of dealing with thehealth care system. Parents indicated that they had a “lack ofinformation about the child's medical history or future plans”, werefirst “getting information about the child after becoming attached” tothe child and before they realized “I can't work because of all theappointments”. It was noted that children had received the “wrongdiagnosis” because health care professionals were “not understandingthe child's cognitive limitations”, nor recognizing that the “child can'tbudget or count change”, and instead instructed parents to “watch forsigns of severe medical problems” and spent time “waiting for medicaltreatments”. It was noted that foster parents found it “difficult to find afamily doctor because of complicated medications”, and instead had togo “back and forth to thehospital several times aweek”. In addition, theyspent time “fighting to get special equipment” for their foster child.

4. Discussion

In this section, the perspectives of foster parents interviewed inthis study are compared to the literature. Similarities and differencesare noted.

4.1. Cluster 1: professionals

In this cluster, the statements emphasized the challenges of findingand dealing with professionals and local services for their fosterchildren. The foster parents described difficulties obtaining anappropriate diagnosis. The diagnoses received left the child with alabel that was of limited accuracy and modest utility for obtainingneeded services from professionals in the social services system. Theyfound that these professionals were too busy, not particularlyknowledgeable about their child, and could provide only limitedaccess to needed services such as counselling. There is a great deal ofsimilarity between the problems identified by foster parents in thisstudy and the literature in the area of relationships and services byprofessionals. It has been noted that professionals in the socialservices system have been seen by foster parents as burned out, andchanging frequently (Jivanjee, 1999). Advocacy emerges as a theme interms the literature review on parenting children with disabilities foradoptive parents (Duquette et al., 2006). Additionally, the need forfoster parents to become advocates on behalf of their foster childrenwas identified in the literature (Gibson, 2003) as well as byparticipants in this study.

4.2. Cluster 2: money

Foster parents in the study identified several issues related tomoney.Themoney, it should benoted,was to cover costs of home renovations toaccommodate the needs of the children, aswell as basic supplies such asschool supplies and music lessons, and not payment for fostering“service”. There was also evidence in the literature for the need toaddress the costs of basic needs, such as clothing and communityactivities (Vig & Kaminer, 2002), but far less attention to the physical

45J.D. Brown, S. Rodger / Children and Youth Services Review 31 (2009) 40–46

accommodations to a building necessary to appropriately house a childwho's appropriate care necessitates, for example, accessible doorwaysand hallways, storage space for equipment, and a bedroom that isproperly equipped. The costs of fostering a child with a disability caneasily be higher than the costs of fostering a child without a disability(Reilly & Platz, 2004), yet there is very little attention in the literature onthe nature of those differential costs and what adequate versusinadequate coverage of them means for foster parents.

4.3. Cluster 3: school

Foster parents who participated in the study noted problemsdealing with the local school district. They found that their childrendid not have access to the appropriate level of support oropportunities to learn in a regular classroom. It required a great dealof effort on their part to advocate for their child, and this was clearlyapparent in the literature (Buelow, 2007; Duquette et al., 2006). Fosterparents in our study did, consistent with the literature (Farmer et al.,2004), identify problems associated with navigating between thevarious systems – child welfare, education, and health care – theirchildren were involved in.

4.4. Cluster 4: child's behavior

Foster parents in our study described many problems theyexperienced in relation to behavioral issues of the children in theircare. These included issues related to aggression, sexual acting out,rapidly changing moods, as well as disrupted eating and sleepingpatterns. Theyworried not just about physical and emotional damage totheir homes and families, but thedifficulties associatedwith seeing theirfoster children develop patterns of behavior that contributed to theirvictimization, segregation or isolation in the broader community. Thereis a great deal of literature on the types and frequencies of behavioralproblemsamong childrenwithdisabilities (e.g. Roach&Orsmond,1999),children in care (Puddy & Jackson, 2003; Tarren-Sweeny, 2007), and theconcerns parents have about the effects on themselves and othermembers of the family (Pithouse et al., 2002). However, there has beenvery little emphasis in the literature on the concerns that foster parentshave for their children in the community – as potential victims of crime,or as aggressors – that leads to a heightened potential for isolation andmarginalization of children with disabilities.

4.5. Cluster 5: self care

Foster parents described several problems associated with takingcare of themselves, from finding the time and being able to get away.Foster parents also indicated that they themselves faced the stigmaassociated with a disability that did not have physical component, andhow they dealt with a lack of understanding by others about their ownstrengths and challenges. There is a substantial literature on the self-careneeds of foster parents in general (Mason & Linsk, 2002), including theneeds for in-home and out of home supports, both informal and formal(Banyard et al., 2001; Burry, 1999). However, there is no literature thatwewere able to find on the needs of foster parents who themselves haddisabilities and their particular self-care needs.

4.6. Cluster 6: multiple roles

Foster parents in the study described a variety of roles that weredifficult to balance. The reported spending considerable time travelingto appointments, managing schedules of appointments, obtaining anddispensing medications, providing consistency (and vigilance over)behavioral expectations, and working with the birth family, as well asthe attachment to the children that they found themselves developing.There is evidence in the literature about the diverse roles that fosterparents find themselves in, including attention to the issues of loss and

grieving that foster parents deal with after a child has died (Schormans,2004) who experienced a similar process to the loss of a birth child, butfelt the legitimacy of their need was questioned by others.

4.7. Cluster 7: medical system

Foster parents described several challenges related to interactionswith the health care system. They reported a general lack ofinformation about the child, her or his medical conditions inparticular, and difficulty finding a health care provider who wouldtake their child's case. It was also noted that the day to day realities forthe children including their abilities and limitations, as perceived byfoster parents, were not taken into account when they received adiagnosis, and very little follow up occurred after the diagnosis. Therehas been attention in the literature to health care related challenges offoster parents with children who have disabilities, and the insensitiv-ity of the system to their needs (Craven & Lee, 2006; Palladino, 2006).

5. Conclusion

In general, therewas consistency between the perceptions of fosterparents caring for childrenwith disabilities and the problems reportedin the literature. However, there were four differences which suggestareas worthy of additional research, including the monetary costsassociated with fostering a child with a disability, the role of thecommunity – social networks, and physical neighborhood character-istics – in the care of foster children with disabilities, the circle of careof children with disabilities, as well as the particular needs andchallenges of foster parents who themselves have disabilities.

The financial needs of foster parents have been explored in theliterature in relation to recruitment and retention and whetherincreased stipends make a difference. The foster parents in this studydid not suggest that a simple relationship exists between their abilityto care for a child and the financial support they receive. Indeed, thecosts of caring for a child with a disability that necessitates substantialup-front expenses – such as structural changes to a home, particularpieces of equipment for mobility, communication or learning – are notconsistent across children or foster parents. The realities that parentsdescribe are unique and specific to a particular child in a particularcontext, and the support costs (for the children, not the foster parents)should be determined on the basis of those factors. The calculationformula employed to determine eligibility for financial support didnot fit well with the special circumstances and real out-of-pocketcosts borne by foster parents in the study. It may be worthwhile toexplore the real costs, from the perspectives of foster parents, as wellas potential funding methods for foster families with children whohave disabilities that are commensurate with their realities.

Foster parents in the study also described their concerns about thewelfare of the children in the broader community where they facehigh risk for victimization. The definitions of social support typicallyemployed within the literature include formal support to fosterparents. The results of our study suggest that informal support tofoster parents includes support extended to foster children by othersin a community, where the children are accepted and included, caredfor and respected by others. Although this is an indirect form ofsupport to foster parents, it may be worthy of study as a way for fosterparents of children with disabilities to be informally supported byothers, and reduce the energy consumed by concerns and efforts to bevigilant and protective of their children outside the home. Indeed, astudy of the neighborhood and community factors that contribute tofoster placement success may be worthwhile.

One strategy that has been reported in the literature to care for andnurture a personwith disability is the circle of care.While it is generallyrecognized that each child is born into an adult circle of care (parents,extended family, community resources), this circle becomes even moreimportant when a child and their families live with challenges. The use

46 J.D. Brown, S. Rodger / Children and Youth Services Review 31 (2009) 40–46

of ‘caring circles’ usually involves gathering a group of people that mayor may not be related to the child, to share responsibilities and careactivities, and research shows that such circles can have a positiveimpact on both the person with the disability and their family (Gold,1994). We could find research evidence for the utility and outcomes ofthis strategywith foster parents. Such researchmaymake an importantcontribution to the fostering literature.

A final issue that has received little attention in the literatureconcerns the experiences of foster parents who themselves havedisabilities. Although the reference in our study was to the presence or“invisible disability” and the perception of how that was understood byothers in the lives of foster parents, the experiences – needs, challenges,resources, rewards – of foster parents with any disability seems worthyof exploration andwouldmake a contribution to the fostering literature.

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