RISP Data Bytes

Background

The most common way people with intellectual and developmental disabilities (IDD) receive services is through Medicaid Home and Community-Based Services (HCBS) waivers. Before waiver services began in 1982, people with IDD could only receive services in large institutions. People can receive waiver services in their own homes, family members’ homes, group homes, or other settings in the community.

Key Finding

In 2020, there were 954,314 people with IDD receiving HCBS waiver services with average per person expenditures of $49,787. The average expenditure per person for children aged 21 and younger was $17,814. For adults aged 22 and older, they averaged $60,172 per person. Expenditures are lower for children since they usually live with family and receive services through their school. Since more adults live in non-family homes, their waiver expenditures are higher because paid staff cover all needed hours of service.

A bar graph compares average per person expenditures by age in 2020. For people with IDD of all ages, an average of $49,787 was spent on waiver services. Children ages 0 to 21 received $17,814 per person. Adults ages 22 and up received $60,172 per person. — LTSS Recipients with IDD Living with Family, Select Years 1998 to 2020

Recommendations

When states set Waiver allocation structures they must account for cost differences by age. When child recipients age out of school their allocation may need to be adjusted to account for the loss of school services.

Data Source

Larson, S.A., Neidorf, J., Pettingell, S., & Sowers, M. (2024). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2020. 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.

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.

Abbreviations used: IDD Intellectual or Developmental Disabilities; HCBS Home and Community Based Services