RISP Data Bytes

Background

In 1982, almost all long-term supports and services (LTSS) for people with intellectual and developmental disabilities (IDD) were provided in institutions licensed as Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID). Beginning in 1982, Medicaid began offering LTSS in Home and Community-Based Services (HCBS) settings. These services allow people with IDD to receive services while living in their own homes, with family members, or in group homes or other community settings such as with a host or foster family.

Key Finding

In 1982, 140,752 people with IDD lived in ICF/IIDs. That year HCBS began and 1,381 people with IDD received HCBS. The number of people in ICF/IIDs peaked in 1993 at 147,729. The number of people receiving HCBS increased every year and 954,314 people with IDD received HCBS in 2020. Just 64,902 people lived in ICF/IIDs in 2020.

Recommendations

Congress recently passed major cuts to Medicaid funding. Optional Medicaid services like HCBS are at risk as states decide how to spend fewer Medicaid dollars. This may force families to choose between institutional services or going without needed supports. Institutional services in ICF/IIDs are very expensive and have inherent barriers to participation in community life. We recommend you talk to your state lawmakers about protecting Medicaid HCBS funding. To serve people with IDD with dignity, continued investments in HCBS are critical.