University of Minnesota
1977 to present
Mode of Collection
Administrative data are submitted by State IDD agencies via an online survey or a word document that mirrors the online survey.
RISP is an Administration on Intellectual and Developmental Disabilities (AIDD) Project of National Significance that maintains longitudinal records of long-term supports and services (LTSS) for people with intellectual and developmental disabilities (IDD). RISP collects and reports on national and state level data on the history of institutionalization, deinstitutionalization, and the development of community-based LTSS for people with IDD in the 50 states and the District of Columbia. The RISP project is housed at the University of Minnesota's Institute on Community Integration and advised by the National Association of State Directors of Developmental Disabilities Services Research Committee and a National Advisory Board. The RISP project, operating under a variety of names and funding sources, has collected and reported data of LTSS for people with IDD since 1977 and references historical records dating back to the 1880 U.S. Census.
Type of entity providing long-term services (state or nonstate); living arrangement (own home, family home, foster or host family, group homes, institutions); setting size (number of service recipients sharing a home); recipient age (21 or younger, 22 or older); funding authority (Medicaid, State, other); time (state fiscal year - July 1 to June 30).
Medicaid and state-funded LTSS managed by, or under the auspices of, state IDD agencies.
The RISP project uses administrative data from state developmental disabilities agencies to estimate the number of people with IDD who receive publicly funded long-term supports and services through or under the auspices of those agencies. RISP surveys are distributed electronically to state IDD Directors and designated data staff, annually. RISP project staff review prior year study findings and provide instructions for completing the survey. The staff team also reviews incoming surveys to identify missing data and inconsistencies and works with states to ensure the published data are as accurate as possible.
Response Rates and Sample Size
In 2016, administrators from 50 states and the District of Columbia were sampled; all 51 responded.
US totals include imputations for missing state data.
Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Bourne, M.L. (2018). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2016. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.