Policy Research Brief, Vol. 30, No. 2

Institutional Bias in Long-Term Services and Supports for People with IDD

policy research brief, institute on community integration, university of minnesota

Research Issue

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.

Study Background

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.

Policy Recommendations

  • 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.

Key Findings

This graphic is a bar graph with two bars. One bar is gold and represents the average annual expenditure, $140,210, for people living in ICF/IIDs. The second bar is maroon and represents the average annual expenditure, $48,458, for people living in the community receiving HCBS Waiver-funded supports.

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 graphic is a line graph that has two lines. There is a maroon line that is rising up indicating the increase in HCBS waiver recipients from 562,067 in 2009 to 930,356 in 2019. There is a yellow line that is slightly going down indicating a decrease in people living in ICF/IIDs from 87,373 in 2009 to 67,498 in 2019.
This maroon colored graphic shows two groups of people, one is large and one is small. The large group of people represent the 930,356 individuals that were receiving HCBS Waiver-funded supports in 2019. The small group of people represents the 194,983 people on the waitlist to receive HCBS Waiver-funded supports in 2019.

Policy Forum

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

Research cited:

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.

Download a 2-page PDF of this issue of Policy Research Brief

Policy Research Brief: z.umn.edu/rtcprb

The University of Minnesota is an equal opportunity educator and employer. This document is available in alternative formats upon request.

The Institute on Community Integration (ICI), collectively acknowledges that Minnesota is located on the traditional, ancestral, and contemporary lands of the Anishinaabe, Chippewa, Ojibwe, Dakota, Cheyenne, and other Native peoples. This land holds great historical, spiritual, and personal significance for its original stewards, the Native nations and peoples of this region. We affirm tribal sovereignty and will work to hold ourselves and affiliations accountable to American Indian peoples and Nations.

Ongoing oppression and discrimination in the United States has led to significant trauma for many people of color, immigrants, people with disabilities, and other oppressed persons. At ICI, we affirm our commitment to address systemic racism, ableism, and all other inequalities and forms of oppression to ensure inclusive communities.