1 Family Community Participation The Results of a New Survey and Implications for Practice Poster...

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Family Community ParticipationThe Results of a New Survey and

Implications for Practice

Poster Session Presented at AFP 2005 Beach Center on Disability

University of Kansaswww.beachcenter.org

Denise Poston and Nina Zuna

With assistance from

Kandace Fleming, George Gotto, Janet Marquis,

and Jean Ann Summers

2© Beach Center on Disability

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


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?


Developing the Survey

Literature review – participation, integration, isolationLiterature on the ability of people with disabilities to access community servicesConceptualizing family community participation Activities Barriers Overall community participation Sense of belonging

Focus groups with familiesInitial survey with telephone interviews – revised survey


Sample332 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%


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


Family Community Activities (CFA)MoviesGoing out to eatReligious activitiesWatching sporting eventsParksSwimming poolShoppingGetting together with family and friendsQuiet, indoor things (museums)Active, outdoor things (camping)Working outside the homeJoining hobby club or class


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.


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 scale1= Not much; 2 = Somewhat; 3 = Big problem


Challenges to Community Participation (CCP)Unfriendly peoplePhysical accessibilityChild’s behaviorNoisy or crowded environmentTransportationToo busy caring for childCommunity too smallCommunity not safeNo childcare for children without disabilitiesNo special childcare or respite for child with disabilityPeople don’t speak our languageNot enough money**Child’s health**Not adequate cognitive accommodations for my child


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


Overall Community SatisfactionHow 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


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)


Relationships with FQOL

The lower the scores on challenges (CCP), the higher the scores on family quality of life domains. Family Interaction r = -.265 Parenting r = -.227 Emotional Well-being r = -.376 Physical / Material Well-being r = -.422 Disability-Related Support r = -.390


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)


Disability Levels 3 levels - Mild/unknown – moderate – severe/very severeThere 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


Disability Types 3 types - Emotional/Behavioral – Cognitive – Physical / SensoryThere 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) = 11.21 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)


Family Education Level7 Levels – ranging from no HS graduation to graduate degreeThere 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)


Family Income Level3 levels – <25k – 25-60k - > 60kThere 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


Applications for the Family Community Integration Survey

Planning supports for individual familiesEvaluating agencies or programs Community needs assessmentConducting researchHow could you use the FCI survey and other Beach Center tools in your agency?Just ask us! E-mail [email protected]


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?


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.

1 Family Community Participation The Results of a New Survey and Implications for Practice Poster...

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