RISP Data Bytes

Background

Today, the most common funding source for services for people with intellectual and developmental disabilities (IDD) is Medicaid Home and Community-Based Services (HCBS) Waivers. Before HCBS Waiver funding became available in 1982, Medicaid only paid for services provided in institutions. Now people can get Medicaid funded services in their own homes, family members’ homes, group homes, or other community settings.

Key Findings

In 2021, there were 953,571 people with IDD receiving Medicaid HCBS waiver funded services with average annual per person expenditures of $51,835. The averages were $19,738 for children aged 21 and younger and $62,998 for adults aged 22 and older. Expenditures are lower for children since they usually live with family and receive school-based services. Since many adults live in non-family homes, their waiver expenditures are higher because paid staff cover all service hours needed.

Bar chart titled “2021 Annual Medicaid HCBS Expenditures Per Person by Age.” Children ages 0 to 21 received an average of $19,738 each. Adults received an average of $62,998. All HCBS recipients received an average of $51,835. — LTSS Recipients with IDD Living with Family, Select Years 1998 to 2021

Recommendations

When states set Medicaid Waiver allocations, they must account for cost differences by age and living arrangement. When child recipients age out of school their allocation may need to be adjusted to account for the loss of school services. Allocations will also often need to be adjusted for individuals who move away from the home of a family member.

Data Source

Larson, S.A., Neidorf, J., Pettingell, S., & Nye-Lengerman, K. (2025). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2021. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

Authors

Sheryl A. Larson, Jon Neidorf, and Brian C. Begin. The authors acknowledge the contributions by Jerry Smith, Sarah Curtner and John Smith to this product.

Data Byte Authors: Sheryl A. Larson and Jon Neidorf. The RISP project is funded through a cooperative agreement from the Administration on Community Living, U.S. Department of Health and Human Services, Cooperative Agreement #90DNPA0006 with supplemental funding from the National Institutes on Disability, Independent Living and Rehabilitation Research Grant #90RTP0011.