Management of respite and personal assistance services in a consumer-directed family support programme

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.