How have the places people with IDD live changed?

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Double bar chart comparing the number of ICF/IID recipients and the number of Medicaid HCBS waiver recipients in the United States each year between 1982 and 2020. In 1982, there were 1,381 HCBS waiver recipients with IDD and 140,752 1CF/IID recipients. By 2020, the number of HCBS Waiver recipients had increased to 954,314 and the number of people living in ICF/IID settings had declined to only 64,902 people.

Details

  • In 1982, 140,752 people with IDD lived in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) while only 1,381 got services in Home or Community-Based Services (HCBS) settings.
  • By 1995, more people with IDD got services funded by Medicaid HCBS Waiver than were living in an ICF/IID.
  • By 2020, 94% of people getting Medicaid HCBS or ICF/IID services got services in home or community-based settings.
  • People getting services in HCBS settings have more choices and better outcomes. However, there are long waiting lists for Medicaid HCBS-funded supports in many states.

How has access to HCBS Waiver services changed for people living with family members?

Bar graph showing the growth in the number of people with IDD living with family who received HCBS Waiver services from 1998 to 2020 for every other year. In 1998, 80,799 people living with family received HCBS Waiver services. In 2020, 521,426 people living with family received HCBS Waiver services.

Details

  • In 1998, 325,650 people with IDD living with a family member were getting publicly funded long-term supports and services (LTSS). Of those, 80,799 got Medicaid-funded HCBS and 244,851 got supports funded by other public entities such as states or counties.
  • By 2020, 878,080 people with IDD living with a family were getting publicly funded LTSS. Of those, 521,426 got Medicaid-funded HCBS and 356,654 got supports funded by other public entities such as states or counties.

How has access to small individualized non-family settings changed?

Stacked bar graph showing the number of people living in individualized non-family homes from 1999 to 2020 for every three years. Each bar shows the proportion of people in their own homes, host/foster family homes, and group homes of one to three people. Each section of the bar grows nearly every year. In 1999, there were 130,972 people with IDD in these settings. In 2020, there were 303, 263 people with IDD in these settings. Each year, the total people in these settings increased except from 2017 to 2020 since there were 309,711 people in these settings in 2017.

Details

  • The number of people with IDD getting LTSS while living in individualized settings shared by three or fewer people increased from 130,972 in 1999 to 303,263 in 2020.
  • The number in their own homes increased from 65,006 to 154,634.
  • The number in host or foster family settings increased from 31,884 to 66,042.
  • The number in provider-operated settings of one to three people (IDD 1 to 3) increased from 34,082 to 82,587.
  • Research shows that people living in smaller settings have more choices about where they live, who their roommates are, and how they spend their time each day.

How has the number of people living in large state-run institutions changed?

This area graph shows the decreasing number of people with IDD living in state-run institutions of 16 or more people each year from 1967 to 2020. In 1967, 194,650 people with IDD lived in large, state-run institutions. By 2020, the number had decreased to 15,937.

Details

  • The number of people living in state-run IDD institutions of 16 or more people increased from 2,429 in 1880 to 194,650 in 1967. It then declined to 15,937 in 2020.
  • An additional 25,749 people with IDD lived in nursing homes. At least 2,254 lived in psychiatric facilities.

Full list of Key Questions about Support for People with IDD