Studying Home- and Community-Based Services (HCBS) Recipients

Opportunity

With project partners at National Association of State Directors of Developmental Disabilities Services, we assisted staff at the Institute on Community Integration at the University of Minnesota on annual data collection and analysis to help federal and state agencies understand state efforts and trends in supporting families and individuals with IDD living in homes of their own or with family members.

Approach

Examining services and populations by state

Funded by the Administration on Community Living, the Supporting Individuals and Families Information Systems Project (FISP) is a national data collection initiative that documents the number of people who receive state-funded developmental disability services while living at home with family; their ages; the types of services they receive; and the dollars spent. The results are used to better understand and promote effective supports for families and individuals with IDD who direct their own support.

The results

In addition to presenting an annual “Status and Trends” report with the findings, the FISP team also produced longitudinal data analyses, conducted policy studies, and disseminated findings.

The FISP team presented results in a variety of formats, and used interactive, online tools to display data on topics of interest to researchers, policymakers, and others. The longitudinal nature of FISP data collection made it possible to examine trends over time, and online tools allowed researchers to examine the national picture or drill down to specific states.

Impact

In addition to helping states gain a better understanding of service populations and the types of family supports provided, the data are used to compare and contrast services and expenditures targeting the person with IDD versus those targeting the family members with whom they reside, and to compare services for children with IDD to services for adults with IDD.