Policy Research Brief, Vol. 32, No. 1

Research Issue

The number of people with intellectual or developmental disabilities (IDD) living in IDD institutions of 16 or more people declined from 207,356 in 1977 to 36,251 in 2020. The number of people with IDD living in home and community-based settings increased from 1,381 in 1982 to 954,314 in 2020.

Medicaid home and community-based services started in 1981. This program has helped people with IDD have more choices about where they live. It gives them the support they need to live in places like their own home, with family, or with a host or foster family. The program is funded with federal and state dollars, and each state runs its own programs. From one state to another, programs may look very different.

This Policy Research Brief looks at where adults with IDD live. It describes how choices are different in each state, especially in Minnesota.

Study Background

The Residential Information Systems Project (RISP) at the University of Minnesota has tracked the size and type of settings where people with IDD who get Medicaid or state-funded long-term services and supports are living since 1977. This brief is based on the fiscal year 2020 RISP survey results.

Policy Recommendations

• States should offer a variety of individualized small housing options to better support individual choice.
• Continued investments in home and community-based services is essential for community living.
• To help people with IDD live more independently or with family, policies must address the direct support workforce shortage by increasing wages and improving benefits.

Key Findings

Many people with IDD prefer to live with a family member throughout their lives.

The percent of people getting services who live with a family member.

Bar chart with three bars biggest to smallest. The maroon bar 62% of children and adults combined. The gold bar 57% of adults nationally, and the teal bar 33% of adults in Minnesota

However, worker shortages have caused families to go without help, even though they had approved Medicaid funding. For example, 68% of family caregivers said worker shortages meant their family members received less support. Forty-one percent had said they had to leave their jobs to care for their family member, and 54% felt very or extremely stressed (Anderson, et al., 2023).

The number of people with IDD living in group homes per 10,000 of the population.

U.S. map showing group home information. Alabama 6.7, Alaska 19.6, Arizona 4.9, Arkansas 7.1, California 7.7, Colorado 5.9, Connecticut 13.4, Delaware 11.6, District of Columbia 19.2, Florida 6.3, Georgia 3.9, Hawaii 2.4, Idaho 9.2, Illinois 12.2, Indiana 12.6, Iowa 19.5, Kansas 11.3, Kentucky 6.3, Louisiana 9.6, Maine 17.9, Maryland 10.4, Massachusetts 15.7, Michigan 9.7, Minnesota 27.4, Mississippi 10.4, Missouri 3.3, Montana 8.4, Nebraska 9.4, Nevada 0.4, New Hampshire 14.8, New Jersey 10.3, New Mexico 5.9, New York 17.4, North Carolina 9.0, North Dakota 11.0, Ohio 7.6, Oklahoma 8.1, Oregon 7.6, Pennsylvania 12.5, Rhode Island 10.6, South Carolina 8.2, South Dakota 24.6, Tennessee 8.9, Texas 5.8, Utah 8.5, Vermont 2.4, Virginia 6.2, Washington 5.5, West Virginia 10.3, Wisconsin 6.7, Wyoming 12.2.

Minnesota has the highest percentage of adults with IDD receiving long-term services and supports living in group homes – 60% compared to the national average of 32%. Nevada has the lowest.

For more than a decade, Minnesota’s reliance on group homes has drawn attention. In 2009, the state put a moratorium on licenses for new corporate foster homes (group homes). In 2023, a legal settlement required Minnesota to better support people to move from group homes to more individualized living options.

The problem isn’t the existence of group homes, but that some people living in group homes would prefer living in their own home or with a host or foster family.

Annual costs vary greatly depending on where a person lives.

Bar chart with 4 bars shortest to longest. Yellow bar $29,243 for a person living with a family member, green bar $85,189 for a person living in another setting, teal bar $150,112 for a person in an ICF/IID, and maroon bar, $313,188 for large state run IDD facilities (16 or more people)

Living with a family member costs less because families often provide unpaid support. For those who cannot live or choose not to live with family, having a range of individualized options ensures they can live in settings that best meet their needs.