Management of respite and personal assistance services in a consumer-directed family support programme.
When families control respite hiring and schedules, satisfaction and community life go up.
01Research in Context
What this study did
The researchers asked families who used a consumer-directed respite program. Families could hire, train, and fire their own workers. They could even pay relatives to give respite or personal care.
The team sent out surveys. They wanted to know if more family control made life better for the child and the parents.
What they found
Families who ran their own respite were happier with the help. Their kids joined more clubs, sports, and errands in town. Moms were also more likely to keep or find paid work.
Letting families pick their own staff beat using an agency that chooses for them.
How this fits with other research
Eskow et al. (2019) extends this idea. They studied autism waivers and found choice plus daily control boosts both child progress and family quality of life.
Leung et al. (2011) looks like a contradiction. That study says some families give up care when respite fails. The key difference is amount, not design. Madden et al. (2003) gave enough hours and let families hire who they wanted. K et al. saw families fail when respite was too scarce or rigid.
Norton et al. (2016) adds that simply giving more respite hours lowers stress and helps marriages in Down-syndrome families. Quantity and control both matter.
Why it matters
If you write or monitor respite plans, add a line that lets parents pick, train, and schedule their own workers. Even letting them hire a cousin can raise satisfaction and keep the child active in the community. Check that the authorized hours truly meet the family’s weekly needs so the support does not fade.
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02At a glance
03Original abstract
BACKGROUND: The present study explores the management of respite and personal assistance services by families with relatives with developmental disability (DD). It focuses on the control of families over recruiting, hiring, training, scheduling, directing and negotiating wages of the staff they hire to provide services. METHODS: Surveys from 97 families using paid respite or personal assistance services were used to test associations between: 1) level of control of services and outcome variables; 2) hiring relatives to provide services and outcome variables. RESULTS: More control by families in the management of their respite/personal assistance services was associated with increased service satisfaction, increased community involvement of individuals with DD and increased employment of mothers. Families tended to hire friends, neighbours, and to a great extent, other family members. Hiring of other relatives to provide services was associated with the increased community involvement of individuals with DD. CONCLUSIONS: The present study supports the idea that there are benefits for both caregivers and individuals with DD with increased control of respite and personal assistance services. The study also supports benefits associated with hiring relatives and recommends additional research in this area to guide policies.
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00496.x