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

Author(s): Caldwell, J. and Heller, T.

Published In: Journal of Intellectual Disability Research. 47 (4/5): 252-366

Study Aim/Purpose: The study had two main objectives. First, it sought to explore associations between the amount of family control in the management of paid respite/personal assistance services for families of individuals with developmental disabilities (DD) and five outcomes: caregiving burden, caregiving satisfaction, caregiving self-efficacy, satisfaction with the service, hours of weekly employment of the mother, and community involvement of the individual with DD. Second, the study sought to compare outcomes for families who hired relatives to provide respite/personal assistance to those who hired non-relatives. 

Summary of Methods: This study used a cross-sectional design with data collected through a survey completed by 97 families receiving paid respite or personal assistance from the Illinois Home Based Support Services Program. The researchers defined level of family control in the management of respite/personal assistance services by rating caregiver responses to survey questions in six areas: recruitment of individuals providing the service; hiring and firing of individuals; training of individuals; deciding what activities are performed; deciding the days/time services are provided; and determining the wages of individuals providing services. 

Summary of Key Results: Statistical associations were found between more control by families in the management of their respite/personal assistance services and 1) increased service satisfaction; 2) increased community involvement of individuals with DD; and 3) increased employment of mothers. The majority of families in the study hired other relatives to provide services and there was a significant positive association between hiring relatives and increased community involvement of individuals with DD. 

Study Limitations (as cited by the authors): The authors suggest that some of the measures they used may have been weak and specifically note the low reliability of their measures of caregiving self-efficacy and community involvement. 

Authors’ Discussion/Conclusions: “While there are individual considerations in the amount of control desired by people with disabilities and families, the present study suggests that policies should allow flexibility and consumer direction when desired.” The authors make recommendations for future research including studies to better explore the preferences and outcomes surrounding community inclusion of persons with DD, health outcomes of respite, and outcomes associated with hiring other family members to provide services. They also recommend that future research include the perspectives of persons with DD and explore how much control these individuals have in hiring and directing staff and how they feel about hiring other relatives.