Shifting Tides in Medicaid Supports for People with IDD

Abstract

The Residential Information Systems Project (RISP) has studied residential settings and deinstitutionalization trends for people with intellectual and developmental disabilities (IDD) for more than 40 years. Of the estimated 7.43 million people with IDD in the US, 18% get publicly funded supports. Most people with IDD live with family members throughout their lives, including 59% of the people getting funded supports. The number of people getting supports increased from 174,823 in 1988 to 949,108 in 2018, and spending increased from $6.3 billion to $51.9 billion. However, expenditures for people with IDD as a proportion of total Medicaid spending declined. Today, more than 200,000 people with IDD are waiting for publicly funded supports. Chances of getting supports vary by state. Adults with IDD in some states are 10 times more likely to get supports than adults in other states. The proportion of service recipients living with family members ranges from less than 10% to 88%. In 1977, more than 80% of people with IDD who did not live with family members lived in institutions. Today, 83% live in settings of six or fewer people. Only 115 of the 376 state-run IDD institutions in operation since 1960 remain open.