RISP Data Bytes
Waitlists for Medicaid HCBS Waiver Funded Long-Term Services and Supports
Background
Home and Community-Based Services (HCBS) help people with intellectual and developmental disabilities (IDD) to live and work in the community. They take the money that used to be spent for people to live in institutions and use it to pay for services that help them live in the community.
Key Finding
In 2013, there were about 710,000 people who used these HCBS, and about 232,000 people who were on the waiting list. In 2019, there were 14 states with no waiting lists to receive HCBS, but the number of people who want HCBS continues to grow. In 2019 there were 930,000 people receiving HCBS and 195,000 people waiting to get these services. There are now more people with IDD who want HCBS than there is money to support them. There are still many people with IDD who live by themselves or with their family and do not receive any HCBS at all.
Total Medicaid ICF/IID and Waiver Recipients; People in Own or Family Home Waiting for Waiver Funding on June 30 of 2013 to 2019; and Percent Growth Needed to Serve Those Waiting
The bar graph shows Medicaid HCBS Waiver recipients with IDD; people in own or family home waiting for HCBS Waiver funding on June 30 of 2013 to 2019; and percent growth needed to serve those waiting.
- In 2013 there were 709,870 individuals receiving Medicaid HCBS Waiver and 232,204 individuals waiting to receive these services. Services would need to grow by 33% to serve everyone waiting.
- In 2014 there were 740,032 individuals receiving Medicaid HCBS Waiver and 216,328 individuals waiting to receive these services. Services would need to grow by 29% to serve everyone waiting.
- In 2015 there were 774,964 individuals receiving Medicaid HCBS Waiver and 199,641 individuals waiting to receive these services. Services would need to grow by 26% to serve everyone waiting.
- In 2016 there were 807,462 individuals receiving Medicaid HCBS Waiver and 193,828 individuals waiting to receive these services. Services would need to grow by 24% to serve everyone waiting.
- In 2017 there were 846,878 individuals receiving Medicaid HCBS Waiver and 182,340 individuals waiting to receive these services. Services would need to grow by 22% to serve everyone waiting.
- In 2018 there were 878,842 individuals receiving Medicaid HCBS Waiver and 208,889 individuals waiting to receive these services. Services would need to grow by 24% to serve everyone waiting.
- In 2019 there were 930,356 individuals receiving Medicaid HCBS Waiver and 194,983 individuals waiting to receive these services. Services would need to grow by 21% to serve everyone waiting.
Recommendations
There are now more people with IDDs who want HCBS than there are funds or staff to support them. There are still many people with IDDs who live by themselves or with their family and do not receive any HCBS at all. Our recommendations are for additional investments in HCBS as this is the preferred option for most people, addressing the workforce crisis to increase staffing that provide these services, and making HCBS an entitlement program guaranteeing those who are eligible can receive the service.
Data Source
- Larson, S. A., Neidorf, J., Pettingell, S., & Sowers, M. (2023). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2019. 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 gets funds 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 #90RTCP0011.
Abbreviations used: IDD Intellectual or Developmental Disabilities; HCBS Home and Community Based Services