How have the places people with IDD getting Medicaid funded supports 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 2021. In 1982, there were 1,381 HCBS waiver recipients with IDD and 140,752 1CF/IID recipients. By 2021, the number of HCBS Waiver recipients had increased to 953,571 and the number of people living in ICF/IID settings had declined to only 63,085 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 2021, 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 funded 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 2021 for every other year. In 1998, 82,264 people living with family received HCBS Waiver services. In 2021, 526,326 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 2021, 872,422 people with IDD living with a family were getting publicly funded LTSS.
  • Of those, 526,326 got Medicaid HCBS Waiver-funded services and 346,096 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 2021 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.

Details

  • The number of people with IDD getting LTSS while living in individualized settings shared by three or fewer people increased from 166,805 in 2001 to 298,448 in 2021.
  • The number in their own home increased from 80,242 to 145,779.
  • The number in host or foster family settings increased from 40,688 to 66,948.
  • The number in provider-operated settings of one to three people (IDD 1 to 3) increased from 45,875 to 85,721.
  • Research shows that people living in smaller settings have more choice about where they live who their roommates are, and how they spend their time each day.

How has the number of people with IDD living in large state-run IDD 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 2021. In 1967, 194,650 people with IDD lived in large, state-run institutions. By 2021, the number had decreased to 15,049.

Details

  • In 1967, the average daily population of large state-run IDD facilities peaked at 194,650.
  • By 2021, the average daily population had declined to 15,049.

Full list of Key Questions about Support for People with IDD