RISP Data Bytes
People with IDD waiting for HCBS Waiver-Funded Supports in 2020
Background
Both the Residential Information Systems Project (RISP) and KFF report on Medicaid Home and Community-Based Services (HCBS) Waiver waiting lists for people with IDD. However, they ask different state agencies for information and have different rules for who to include in their reports. RISP reports data from state IDD agencies. KFF reports data from state Medicaid agencies. RISP does not count people who already get residential services in a Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) or who are already getting HCBS Waiver-funded services. It only includes people who live in their own home or with a family member who are waiting for but not yet getting HCBS Waiver-funded supports. The KFF report includes people in some states who already receive Waiver-funded services who are waiting for additional services. KFF also includes people on interest or referral lists who may or may not be eligible for HCBS-funded services.
Key Finding
For 2020, RISP reported 174,785 people with IDD waiting for but not yet getting Waiver-funded supports in 36 states. KFF (n.d.) reported 464,398 people with IDD waiting for HCBS Waiver services in 32 states. The KFF number for 2020 includes 311,532 people in Texas who were on an interest list. Texas did not respond to the RISP waiting list questions.
People with IDD Waiting for HCBS Waiver-funded Services in 2020
Recommendations
The Centers for Medicare and Medicaid Services (CMS) issued its Medicaid HCBS Access Rule in 2024. The rule requires states to report on the number of people waiting for services. States also have to report the average time people wait for services after they are approved to receive them. CMS still has to give more guidance about the Access Rule. CMS should tell states specifically how to provide waiting list information. This will make it easier for advocates to compare their state’s waiting list to other states.
Data Source
KFF. (n.d.). Medicaid HCBS Waiver Waiting List Enrollment, by Target Population and Whether States Screen for Eligibility. KFF. https://www.kff.org/medicaid/state-indicator/medicaid-hcbs-waiver-waiting-list-enrollment-by-target-population-and-whether-states-screen-for-eligibility
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 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.
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