The Past and Future of Home- and Community-Based Services for Children and Youth with Special Health Care Needs

Full Description: Home and community-based services (HCBS) provide opportunities for Medicaid beneficiaries, including children and youth with special health care needs (CYSHCN), to receive services at home or in the community rather than in institutional settings. Unlike most Medicaid-covered services, however, states use waivers to cover most HCBS. Waivers allow states to select and limit the number of people that can receive HCBS, often resulting in long waiting lists for needed services and possibly unnecessary institutionalization. While clear data on the number of CYSHCN on waiting lists for HCBS is not available, a 2019 report from the Kaiser Family Foundation estimates that over 700,000 people are on HCBS waiting lists, two-thirds of whom are individuals with intellectual and developmental disabilities.
A provision of the American Rescue Plan Act (ARPA) signed in March 2021, offered enhanced federal support to state HCBS programs through a 10-percentage point increase in the Federal Medicaid Assistance Percentage (FMAP). States submitted requests to CMS to use the funds to enhance, expand, or strengthen HCBS for Medicaid beneficiaries.
The Catalyst Center reviewed the state plans that were submitted to Medicaid and found that 11 states proposed using the enhanced funds to address HCBS waiting lists. Four states, Texas, North Carolina, Rhode Island, and West Virginia, specifically mentioned plans to address waiting lists for CYSHCN.
The proposed presentation will describe the state strategies and policies to address HCBS waiting lists for CYSHCN in Rhode Island and West Virginia. State Title V staff from each state will describe the HCBS waiver program serving CYSHCN, explain how strategies are being implemented, describe the collaborations and partnerships involved in implementation, and reflect on the impact of this policy change for families raising CYSHCN.
West Virginia has an HCBS waiver program for children enrolled in Medicaid with serious emotional disorders. This program enables children ages 3 through 20 years who would otherwise require institutionalization to remain in their homes and communities. In addition to using the enhanced matching funds to reduce the waitlist for this program, West Virginia intends to expand the eligibility criteria for the waiver program so it aligns with the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982.
Rhode Island plans to utilize enhanced matching funds to address waiting lists by expanding waiver slots for Intensive Home and Community Based Services, increasing support to families receiving Home-Based Therapeutic Services, Personal Assistance Services and Supports or Respite Services, and opening services to all families served by the Family Community Care Partnerships. Rhode Island also intends to use matching funds to reduce waitlists for children boarding at medical settings waiting for psychiatric care.

Abbreviated Description: Home and community-based services (HCBS) provide opportunities for CYSHCN to receive services at home or in the community rather than in institutional settings. A provision of the American Rescue Plan Act (ARPA) signed in March 2021, offered enhanced federal support to state HCBS programs through an increase in the Federal Medicaid Assistance Percentage (FMAP). States submitted requests to Medicaid outlining the use of funds to enhance, expand, or strengthen HCBS for CYSHCN This presentation from the Catalyst Center features Title V staff from West Virginia and Rhode Island describing the strategies they are using to improve HCBS programs, describing the cross-sector partnerships involved in implementation, and reflecting on the impact of the strategies for families raising CYSHCN.