Policy Research Brief, Vol. 30, No. 2
Institutional Bias in Long-Term Services and Supports for People with IDD
The Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) program is Medicaid’s institutional option for people with IDD who need long-term services and support (LTSS). The Medicaid Home and Community-Based Services (HCBS) Waiver option allows people to get services at home or in their preferred community setting rather than in an institution. The 2014 HCBS Settings Rule ensures that people receiving HCBS programs have full access to the benefits of community living and are able to receive services in the most integrated setting. While ICF/IID services are guaranteed, HCBS Waiver-funded services are not. States are not allowed to have waiting lists for ICF/IID services, but they can have waiting lists for HCBS Waiver-funded services. This results in an institutional bias in long-term supports and services for people with IDD.
The Residential Information Systems Project (RISP.umn.edu) at the University of Minnesota has tracked the size and type of living arrangements for people with IDD who get Medicaid or state-funded LTSS since 1977. This brief is based on Fiscal Year 2019 RISP survey results. It also cites findings from the National Core Indicators In-Person Survey.
Continue to reduce use of expensive ICF/IID settings.
Eliminate Medicaid’s institutional bias by making HCBS an entitlement.
Continue to promote the use of HCBS that support person-centered services, full community inclusion and individual choice.
Enforce all provisions of the 2014 Medicaid HCBS Rule to promote person-centered services, full community inclusion and individual choice.
This graphic has a hand interacting with a menu that offers many choices next to a hand interacting with a menu that offers few choices.
This Policy Forum for this issue of Policy Research Brief will be on Tuesday, October 3rd, 2023 at 1:00 p.m. Central on Zoom. Register here.
The Policy Forum is a bi-monthly web-based presentation and facilitated discussion exploring research published in the most recent Policy Research Brief. Please visit the website for details and to view previous forums.
Published September 2023
Editor: Agnes Cole, Brian Begin, and Sheryl Larson
Graphic design: Connie Burkhart
Larson, S.A., Neidorf, J., Pettingell, S., Sowers, M. (2022). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2019. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. DOI: 10.13140/RG.2.2.23116.08320.
Ticha, R., Hewitt, A., Nord, D. & Larson, S.A. (2013). System and individual outcomes and their predictors in services and support for people with IDD. Intellectual and Developmental Disabilities, 51, 316-332.
Development of this PRB was supported by Cooperative Agreement #90DNPA0001-01 and Grant #90RT5019 from the Administration on Community Living to the University of Minnesota. Points of view do not necessarily represent official ACL policy.
Policy Research Brief: z.umn.edu/rtcprb
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