More Funding Is Needed for HCBS in America

As a new Congress takes office, federal lawmakers are reviving attempts to strengthen the nation’s beleaguered home and community-based care system.

Last week, a bill was proposed that would enhance Medicaid funding to reduce the length of time that individuals with disabilities must wait for services and to solve staffing shortages. Last year, lawmakers failed to implement a proposal to spend $400 billion on home and community-based services.

If passed, The Better Care Better Jobs Act will give states a permanent 10% boost in federal Medicaid matching funds for home and community-based services if they fulfill specific conditions, including requiring personal care services coverage, providing expanded support for family caregivers, enhancing access to behavioral health treatment, and better coordination of housing, transportation, and employment supports.

The bill also includes a provision requiring wages for home and community-based services providers to increase regularly. Low wages make it difficult to find staff for direct care positions.

A study of disability service providers conducted last October indicated that 83% were refusing new referrals, 63% had ceased programs and services, and more than half were exploring further closures.

Across the country, disability advocates have urged state governments to reduce or eliminate waitlists for HCBS services. Many people are stuck on waiting lists for years. This leaves families desperate for any services at all.

Rick Elskamp’s 21-year-old daughter Sheridan has been on the waiting list in Kansas for nine years. 18-year-old JJ Holmes of Florida has been on his state’s waiting list for 16 years. 22-year-old Haley Smith, who lives in Virginia, became eligible for a waiver last year after 14 years.

The system has been underfunded for decades. There are 820,000 disabled people on waiting lists for home and community-based services across the country, but demand for such programs could be much higher.

Medicaid is a lifeline for those like me. Millions of Americans rely on Medicaid-funded home and community-based services, including me. My PCA helps me with daily tasks like toileting, showering, and dressing. Without my PCA, I might have to live in a long-term care facility. In other words, if Medicaid did not exist, life as I know it would end instantly.

Medicaid must be expanded, and waiting lists must be removed. Without Medicaid’s services, people are frequently forced into dangerous situations, which can have disastrous consequences.


Diament, Michelle. “Lawmakers Revive Effort to Prop up Disability Services.” Disability Scoop, Disability Scoop, 27 Jan. 2023,

Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022,

DeFusco, Jackie. “Youngkin Vows to Shrink Wait List for Developmental Disability Services.” WRIC ABC 8News, 29 Dec. 2022,

Griffin, Nicole. “Thousands of Disabled Floridians Spending Years on Medicaid Waiver Waitlist.” Spectrum News 13, Spectrum News, 31 Oct. 2022,

Mipro, Rachel. “Kansas Disability Waitlist Study Could Take Two Years as Needs Mount.” Kansas Reflector, States Newsroom , 21 Oct. 2022,

Mipro, Rachel. “Parents of Disabled Kids Urge Kansas Lawmakers to Expand Aid and Fix Issues with Health Care System.” Kansas Reflector, States Newsroom , 27 Sept. 2022,

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