5. How have the places people with IDD live changed?

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This bar chart compares the number of ICF/IID recipients and the number of Medicaid HCBS waiver recipients in the United States each year between 1982 and 2019. In 1982, there 140,752 1CF/IID recipients and 1,381 HCBS waiver recipients. From 1982 through 1993, there were more ICF/IID recipients than HCBS waiver recipients. From 1994 through 2019, there were more HCBS waiver recipients than ICF/IID recipients. In 2019, There were 930,356 HCBS waiver recipients and 67,498 ICF/IID recipients.
  • In 1982, 140,752 people with IDD lived in institutions called 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 2019, 9 of 10 getting 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?

This bar chart has one bar for every third year between 1998 and 2019. The total height of each bar represents the total number of people with IDD living with a family member getting publicly funded supports. The lower section of each bar represents the number of people living with a family member whose publicly funded supports were funded by a source other than Medicaid (usually state or local tax dollars). The upper section shows the number of living with a family member whose supports were funded by a Medicaid Waiver.

Of the 325,650 people with IDD getting publicly funded support while living with a family member in 1998, 80,799 were supported by Medicaid Waiver funds while 244,851 were supported by other public money. By 2019, 849,104 people with IDD living with a family member got publicly funded supports. Of those, 499,139 got Medicaid Waiver funded supports, and 349,965 got support funded by other public sources.

  • 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 2019, 849,104 people with IDD living with a family were getting publicly funded LTSS. Of those, 499,139 got Medicaid funded HCBS and 349,965 got supports funded by other public entities such as states or counties.

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

  • The number of people with IDD getting LTSS while living in individualized settings shared by three or fewer people increased from 125,948 in 1998 to 301,684 in 2019.
  • The number in their own home increased from 62,669 to 153,079.
  • The number in host or foster family settings increased from 28,122 to 64,869.
  • The number in provider operated settings of one to three people (IDD 1 to 3) increased from 35,157 to 83,736.
  • 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.

This stacked bar chart shows the number of people with IDD not living with a family member who received services while living in small, individualized settings every three years from 1998 to 2019. Each bar has three sections. The lowest section shows people living in group homes with three or fewer people. The middle section shows people living with a host or foster family. The top section shows people living in homes of their own.

Overall, the number of people with IDD living in small, individualized settings increased from 125,948 in 1998 to 301,684 in 2019. The number in their own home increased from 62,669 to 153,079. The number in host or foster family settings increased from 28,122 to 64,869. The number in provider-operated group settings of one to three people increased from 35,157 to 83,736.

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 2019. In 1967, 194,650 people with IDD lived in large, state-run institutions. By 2019, the number had decreased to 16,287.
  • The number of people living in large state-run IDD institutions declined from 194,650 in 1967 to 16,287 in 2019.
  • An additional 26,869 people with IDD lived in nursing homes, at least 1,311 lived in psychiatric facilities, and 52,979 people lived in large group homes of 7 to 15 people.

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