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More than a million Americans with intellectual and developmental disabilities (IDD) receive publically-funded support services. The majority (58%) live in the home of a family member, while 31% live in residential facilities or with host/foster families and 9% live in homes of their own. With the continuing shift toward community living, there’s a need for federal and state agencies to better understand the current status and emerging trends in supporting individuals with IDD who are living in their own home or with family members, as well as supports targeting the family members rather than the individual. These are the areas that will be explored in a new collaborative project housed at the Institute’s Research and Training Center on Community Living (RTC) titled the Supporting Individuals and Families Information Systems Project.
Over the next five years the RTC, collaborating with the National Association of State Directors of Developmental Disabilities Services and the Human Services Research Institute, will establish and refine a comprehensive program of annual data collection and longitudinal data analysis, policy studies, and broad-based dissemination to better understand and promote effective supports for families and for individuals who direct their own support. Funded by the Administration for Children and Families, U.S. Department of Health and Human Services, the project is directed by Sherri Larson and Amy Hewitt at the RTC and builds on its Residential Information Systems Project that has tracked the status and trends in residential supports for people with IDD since 1977.
“We need reliable annual national information about the supports families need and get. This project gives us a chance to develop a system to collect, analyze, and report that information,” says Sherri. Specific activities of the new project will include developing and implementing a data collection process and instrumentation to gather national and state-by-state data about in-home supports for families and individuals with IDD; conducting annual supplemental studies of existing data sets, including the National Core Indicators, or special surveys on service outcomes, trends, and innovations; and sharing findings nationwide. A national advisory team will help identify the actual data elements that the researchers collect. They will begin by gathering ages of people with disabilities living with family members, the funding sources for programs providing support to families, and the number of families receiving family-directed dollars. Project data will compare and contrast the cost and nature of services that target the person with IDD versus those targeting the family members with whom they live, and the cost and nature of services for children versus services for adults with IDD. “This project will provide a stable source of information to federal and state policymakers on supports and services for families who live with adults and children with IDD,” Sherri concludes.
FFI, contact Sherri at firstname.lastname@example.org or 612-624-6024.