1 Family Community Participation The Results of a New Survey and Implications for Practice Poster Session Presented at AFP 2005 Beach Center on Disability University of Kansas Denise Poston and Nina Zuna With assistance from Kandace Fleming, George Gotto, Janet Marquis, and Jean Ann Summers

© Beach Center on Disability 2 Families of children with disabilities feel isolated. Communities provide supports, services, social connections, a sense of belonging, recreation, employment, and education. However, many families of children with disabilities can’t access all their community has to offer due to the barriers they face. But, we don’t know what exactly the barriers are and what families want to do, but can’t. What We Know About Families’ Ability to Participate in Their Community

© Beach Center on Disability 3 Research Questions Survey development as part of a larger research program – what are the impact of policies on families? How satisfied are families with their ability to participate in community activities? What challenges do families experience? What are the relationships between activities, barriers, and overall community participation? What are the relationships between family community participation and family quality of life?

© Beach Center on Disability 4 Developing the Survey Literature review – participation, integration, isolation Literature on the ability of people with disabilities to access community services Conceptualizing family community participation Activities Barriers Overall community participation Sense of belonging Focus groups with families Initial survey with telephone interviews – revised survey

© Beach Center on Disability 5 Sample 332 families of children with disabilities Recruited from 11 DD agencies and 34 schools in 8 states (CA, HI, IN, LA, NM, TX, VA), and an information fair for families in CO The families 91% female 53% employed full or part time 53% earned <25k, 30% 25-60k, 17% 60k 62% non-white The children Autism – 23% Mental retardation – 23% Developmental delay – 9%

© Beach Center on Disability 6 Family Community Activities (FCA) Families rated their satisfaction with their ability to participate in community activities Activities included recreation, leisure, employment, social, spiritual 3-point scale; tied directly to child’s disability “We can’t do this as much as we want because of our child’s disability” 1= Dissatisfied; 2 = Somewhat satisfied; 3 = Very satisfied

© Beach Center on Disability 7 Family Community Activities (CFA) Movies Going out to eat Religious activities Watching sporting events Parks Swimming pool Shopping Getting together with family and friends Quiet, indoor things (museums) Active, outdoor things (camping) Working outside the home Joining hobby club or class

© Beach Center on Disability 8 Family Community Activities (FCA) Overall results Mean = 2.36 Standard Deviation =.487 Generally, satisfaction with participation in community activities was slightly above somewhat satisfied. Generally, families are more satisfied with their participation in outdoor, active, less structured activities than indoor, quiet, structured activities 1 = Dissatisfied; 2 = Somewhat satisfied; 3 = Very satisfied.

© Beach Center on Disability 9 Challenges to Community Participation (CCP) Families rate the extent to which statements are a problem for their family in that it prevents them from participating in their community Problems are related to the child’s disability, family resources, community acceptance, and accessibility 3-point scale 1= Not much; 2 = Somewhat; 3 = Big problem

© Beach Center on Disability 10 Challenges to Community Participation (CCP) Unfriendly people Physical accessibility Child’s behavior Noisy or crowded environment Transportation Too busy caring for child Community too small Community not safe No childcare for children without disabilities No special childcare or respite for child with disability People don’t speak our language Not enough money **Child’s health **Not adequate cognitive accommodations for my child

© Beach Center on Disability 11 Challenges to Community Participation (CCP) Overall results Mean = 1.60 Standard deviation =.42 Generally, families rated challenges as slightly below “Somewhat of a problem.” 1 = Not much; 2 = Somewhat; 3= A big problem Lack of money, child’s behavior, and overly stimulating environment were biggest problems

© Beach Center on Disability 12 Overall Community Satisfaction How satisfied are families that their community makes them feel that they belong? Mean = 3.53 Standard deviation = 1.16 with their level of participation in their community? Mean = 3.48 Standard deviation = 1.12 Scale: On a continuum from 1= Very Dissatisfied to 5 = Very Satisfied

© Beach Center on Disability 13 Relationships (Correlations) The lower the scores on challenges (CCP) (least problematic), the higher the scores on activities (FCA) (the more satisfied families were with their ability to participate in specific activities). (r = -.345) The lower the scores on challenges, the higher the scores on overall satisfaction with belonging in the community. (r = -.432) The lower the scores on challenges, the higher the scores on overall satisfaction with their ability to participate in the community. (r = -.413)

© Beach Center on Disability 14 Relationships with FQOL The lower the scores on challenges (CCP), the higher the scores on family quality of life domains. Family Interactionr = Parentingr = Emotional Well-beingr = Physical / Material Well-beingr = Disability-Related Supportr = -.390

© Beach Center on Disability 15 Group Differences - Employment 2 groups - employed - unemployed No significant differences were found for employment status on activities (FCA) Mean = 2.4, 2.3, respectively F(1,275) =.149 p =.699 There was a significant difference in mean scores for employment status on challenges (CCP) Mean = 1.6, 1.7, respectively F(1,305) = 4.34 p <.05  2 =.014 (small effect size)

© Beach Center on Disability 16 Disability Levels 3 levels - Mild/unknown – moderate – severe/very severe There are differences among the disability levels The omnibus ANOVA was significant for group differences on FCA for three disability levels Mean = 2.5, 2.4, 2.2 respectively F(2,267) = 6.47 p <.01  2 =.047 (Small-medium effect size) The omnibus ANOVA was not significant for group differences on CCP for three disability levels Mean = 1.7, 1.6, 1.6 respectively F(2, 299) = 1.78 p =.17

© Beach Center on Disability 17 Disability Types 3 types - Emotional/Behavioral – Cognitive – Physical / Sensory There are differences among the disability types The omnibus ANOVA was significant for group differences on FCA for three disability types Mean = 2.2, 2.5, 2.3 respectively F(2,230) = p <.001  2 =.09 (Medium effect size) The omnibus ANOVA was significant for group differences on CCP for three disability types Mean = 1.7, 1.5, 1.6 respectively F(2,255) = 4.01 p <.05  2 =.031 (Small effect size)

© Beach Center on Disability 18 Family Education Level 7 Levels – ranging from no HS graduation to graduate degree There are differences among the education levels related to challenges– generally more challenges are associated with less education The omnibus ANOVA was not significant for group differences on FCA for 7 education levels F(6,272) =.975 p =.443 The omnibus ANOVA was significant for group differences on CCP for 7 education levels F(6,303) = 3.31 p <.01  2 =.063 (Medium effect size)

© Beach Center on Disability 19 Family Income Level 3 levels – 60k There are differences among the income levels related to activities The omnibus ANOVA was significant for group differences on FCA for 3 income levels Mean = 2.3, 2.5, 2.2 respectively F(2,261) = 6.30 p <.01  2 =.047 (Small-medium effect size) The omnibus ANOVA was not significant for group differences on CCP for 3 income levels Mean = 1.6, 1.6, 1.6 respectively F(2,293) =.727 p =.484

© Beach Center on Disability 20 Applications for the Family Community Integration Survey Planning supports for individual families Evaluating agencies or programs Community needs assessment Conducting research How could you use the FCI survey and other Beach Center tools in your agency? Just ask us!

© Beach Center on Disability 21 Implications for Practice Consider how IFSP/IEP goals might support a family’s ability to participate in their community. How can you be a “door opener” for a family of a child with a disability? Can you provide training to community organizations on how to integrate children with disabilities and their families?

© Beach Center on Disability 22 Next Steps in this Line of Research Asking more detailed questions Which community integration factors best predict a high family quality of life? Are some families more likely to be more integrated than others? Are some communities more likely to be more “welcoming” than others? What types of policies, services, and supports facilitate integration of both individuals and families? Based on the answers to these questions, building a data base of “what works” in terms of integrating families of children with disabilities in our communities is a future goal.