How many people with IDD get paid supports?

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Stacked bar graph showing the number of people who did and did not receive paid supports in 2020. Of children ages 0 to 21, 644,948 received paid supports and 5,457,876 did not receive paid supports. Of adults ages 22 and older, 1,005,401 received paid supports and 1,270,150 did not receive paid supports.

Details

  • Among children birth to 21 years, 12% (644,948 children) got services through state IDD agencies in 2020.
  • Of the 5.5 million children who did not receive LTSS through state IDD agencies, most got services from schools. Some got services from other state agencies.
  • Among adults 22 years or older, 44% (1 million adults) got services through state IDD agencies in 2020.
  • Nearly 1.3 million adults did not get services through state IDD agencies.
  • Most adults are supported informally by families.
  • An unknown number of adults with IDD got other government benefits such as supplemental security income, public housing, or food assistance.

How many people with IDD are waiting for Medicaid Waiver funded Supports?

Stacked bar chart showing the proportion of people who received long-term supports and services (LTSS) versus those waiting for Medicaid Home and Community-Based Services (HCBS). Next to each bar is the percentage by which the LTSS system would need to grow to serve everyone waiting for HCBS. The first year in the chart is 2016 when the LTSS system would have had to grow 22% to serve everyone. Each year, the bars get larger showing more people receiving LTSS as well as more people waiting for HCBS. The last year shown is 2020 when the LTSS system would have had to grow 18% to serve everyone waiting for HCBS.

Details

In 2020, 985,888 people received long-term supports and services (LTSS) through state IDD agencies. There were 174,785 people living in their own homes or with family members waiting for and not yet receiving Home and Community-Based Services (HCBS) Waiver funding. To serve everone who was waiting, states would have had to grow the number of LTSS receipients by 18%.

Full list of Key Questions about Support for People with IDD