A Place to Call Your Own

A Place to Call Your Own: Housing for People with Intellectual or Developmental Disabilities

By Sheryl A Larson, Ph.D.

Everyone needs a safe place to live that they can afford. People with intellectual or developmental disabilities (IDD) are no exception. The University of Minnesota’s Residential Information Systems Project (RISP) has collected and shared information about the places people with IDD live since 1977. This article highlights key findings from the most recent RISP report (https://risp.umn.edwu/).

There are an estimated 7.43 million people with IDD in the United States, including 27,000 in NH. Most live with a family member throughout their lives. About half (46%) of adults with IDD receive publicly funded supports through state IDD agencies. Among people who get supports, about 59% live with a family member, 11% live in a home they own or lease, 5% live with a host or foster family, and 16% live in a group home shared by six or fewer people. The remaining 9% live in a facility shared by 7 or more people with IDD, or they live in nursing homes or in other institutions.

In the 1960s and 1970s, people with IDD who needed a place to live other than with family members lived in institutions. By 1967, 194,650 people with IDD lived in state-run IDD institutions, often with hundreds of other people. Almost half of those people were children. Most institutions were away from big cities and family support and offered very basic care. They were miserable places to live, which is why families and advocates asked Congress to make things better.

At first, the government tried to fix the institutions. However, by 1981, it was clear that a different approach was needed. People with IDD could not get paid supports while living with a family member, even if it was less expensive than living in an institution. To address this, Congress passed an amendment to the Social Security Act to provide Medicaid funds to support people with disabilities to live with family members or in other community homes. By 2018, 1.3 million people with IDD were getting publicly funded supports.

In 1987, nine out of every ten people with IDD getting Medicaid-funded supports lived in institutions. By 2018, nine out of ten people getting these supports were living in community homes. However, Medicaid funds for ongoing supports were, and continue to be, limited. Overall, 2.5 people with IDD per 1,000 of the population get Medicaid-funded supports. In 2018, for every five people getting supports, another person was on a waiting list. To increase these challenges, there are wide disparities by state on how many people with IDD get funded supports.

Although some state-run IDD institutions still operate, 17 states including New Hampshire have closed all large state-operated IDD institutions. While this is progress, many people with IDD struggle to find housing they can afford. Even though there are many group homes, some adults prefer to live on their own or with a roommate. It is especially hard for those who use wheelchairs and other mobility devices to find accessible housing. Government programs that provide housing assistance, such as the Section 8 Voucher Program, often have long waitlists. New Hampshire law allows landlords to refuse to rent to tenants with Section 8 vouchers. Everyone deserves a safe place to live that they can afford, and people with IDD are no exception.