2. How many people with IDD get paid supports?

A bar chart with four bars compares children and adults who did or did not receive IDD services. The first bar shows 631,200 children received IDD services in 2019. The second bar shows 4,628,800 children with IDD who did not receive services in 2019. The third bar shows 1,002,800 adults who received IDD services in 2019. The fourth bar shows 1,177,200 adults with IDD who did not receive services in 2019.
  • Among children birth to 21 years 12 percent (631,000 children) get services through state IDD agencies.
    • Of the 4.6 million children who do not get LTSS through state IDD agencies most get services from schools, and some get services from other state agencies.
  • One million adults 22 years or older (46 percent) get services through state IDD agencies.
  • Nearly 1.2 million adults with IDD do not get services through state IDD systems.
    • Most adults are supported informally by families.
    • An unknown number of adults with IDD get 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?

This stacked bar chart has a row for each year from 2013 to 2019 and sections showing the number of ICF/IID recipients, Medicaid HCBS waiver recipients with IDD, and people with IDD waiting for Medicaid waiver funded services.

For 2013, the first dark gray section shows 83,262 ICF/IID recipients. The second light blue section shows 709,870 Medicaid HCBS waiver recipients. The third red section shows 232,204 people waiting for waiver services in 2013. The Medicaid ICF/IID and waiver systems would have to serve 33% more people in 2013 to serve all of those waiting for waiver services.

For 2019, the first gray section was shorter than it was for 2013 showing 67,498 ICF/IID recipients. The second light blue section was longer in 2019 than in 2013 with 930,356 waiver recipients. The third red section was shorter than in 2013 194,983 people waiting for waiver services. The ICF/IID and waiver systems would have had to grow 21% to serve all of those waiting for waiver services in 2019.

Values for 2014 were 80,567, 740,032, and 216,328. Values for 2015 were 78,035, 774,964, and 199,641. Values for 2016 were 74,035, 807,964, and 193,828. Values for 2017 were 71,018, 846,878, and 182,430. Values for 2018 were 70,260, 878,842 and 208, 889.

In 2019, there were 67,498 people with IDD living in an Intermediate Care Facility for Individuals with Intellectual Disabilities, 930,356 people getting Medicaid Home and Community Based Long-Term Services and Supports, and 194,983 people living with family members waiting for HCBS Waiver funding. To serve everyone who is waiting, states would need to expand the number of Medicaid ICF/IID and HCBS system by 21%.