Tamar Heller, Katie Arnold, Lieke van Heumen Elizabeth McBride, & Alan Factor Growing Older with a Disability Toronto, June 6, 2011 Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Lifespan Health and Function Department of Disability and Human Development University of Illinois at Chicago Website:

Most adults with I/DD in US live with families Growth of funding for those living at home or independently Growing movement of consumer directed supports The National Core Indicators indicate that over 45% of family caregivers make less than $25, % of these are age and 10% are over 75. Most states allow families to be paid, including parents

Increased community participation and employment for people with I/DD (Caldwell & Heller, 2007) Decreased institutional placements (Heller & Caldwell, 2006) Less unmet needs, out-of-pocket expenses for disability services, and stress and burden for families (Caldwell & Heller, 2003; Heller, Miller, & Hsieh, 1999) Among lower income families, better caregiver mental health and self-determination of people with I/DD (Caldwell & Heller, 2003)

Examine differential experiences and outcomes for adults with I/DD and family caregivers who receive services based on type of personal support worker (PSW) hired Parents, siblings, other family, friends, and agency staff

Survey of families receiving Home Based Support Services (adult Medicaid waiver) Survey of family experience with personal assistance services National Core Indicators Family Survey Interviews with adults with I/DD

Workforce characteristics Caregiver Self-efficacy in managing PSWs Satisfaction with PSW Caregiving Appraisal (satisfaction, burden, self- efficacy) Mental health and Physical health Community Participation of adult with I/DD Daily Choice Making of adults with I/DD

N=522 families (27% response rate) in the Illinois Adult Home Based Support Services Program Analysis includes 369 families who hired PSWs

Mean age: 58, range from % female 60% married 58% employed Relationship to person with I/DD: Parent (91%), sibling (8%), other family member (3%)

Mean age 31 from % males, 42% females 72% White, 27% Minority Level of ID: mild (14%), moderate (33%), severe (22%), profound (12%), don’t know (14%)

Parent 170 Sibling 52 Other Family 42 Friends 56 Agency staff 49

Mean hours weekly =27 Mean number of PSWs in past year=2 Mean number of PSWs who stopped working=.30 Mean number of months with same PSW=74.75

Satisfaction with PSW Highest satisfaction with family members with siblings being the highest Lowest for agency staff Self-efficacy with managing PSW Highest with siblings Lowest for agency staff Mental health Highest with siblings Lowest for agency staff

Physical Health Highest with sibling Lowest with friends Daily Choice Highest with agency staff Lowest for friends and parents

“I never had any luck at hiring a PSW so I just continue on caring for my son myself; no one will take better care of him than me.” It enables me to stay home and provide the help my son needs. If I didn’t receive this money I would have to work outside the home and my son would probably have to live in a group home.” “I feel good about my older son getting paid to help with my younger son, I would rather have family whom I know…. and I don’t have to worry about mistreatment.” “Since we hired our own-it gives us more flexibility with hours-when we used an agency, hours were very limited and workers were very transient.”

Only significant differences in employment status—less satisfaction with employment status if parents were PSW Currently expanding sample

Training Intervention to help persons with I/DD and families better direct their supports with following goals: Involvement of both the family and person with I/DD in planning and setting goals Higher satisfaction with PA services Greater community participation and choice making of person with I/DD Attainment of goals set by persons with I/DD and their families

Training Intervention to help persons with I/DD and families better direct their supports with following goals: Involvement of both the family and person with I/DD in planning and setting goals Higher satisfaction with PA services Greater community participation and choice making of person with I/DD Attainment of goals set by persons with I/DD and their families