Across the country, thousands of professional caregivers that make up the home and community-based care workforce help Americans with intellectual and developmental disabilities, older adults and people with disabilities receive support in their homes and communities rather than in more expensive institutions.
These caregivers provide critical emotionally and physically demanding care to people, allowing them to live life with dignity and self-determination. They support our neighbors across the country with bathing, dressing and eating. They help them build friendships and stay connected with their families and engage in our communities.
This community-based model is central to Medicaid’s home and community-based services, which serves as a lifeline for families and the fabric that helps keep communities strong and thriving. These caregivers are the reason why an estimated 94 percent of Americans with an intellectual and developmental disability can live in their homes and communities, rather than in institutions.
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Their impact extends well beyond the people they directly support. These caregivers — often known as direct support professionals — make it possible for family caregivers to stay in the workforce, for employers to retain valued workers and for communities to remain stronger and more stable.
But right now, this workforce and the home and community-based care system that supports them is in crisis. Administration and congressional actions purportedly aimed at targeting waste, fraud and abuse in Medicaid — goals we fully support — have been so broadly construed that the integrity of all home and community-based care is being called into question.
Every dollar lost to fraud is a dollar taken from a family that genuinely needs care, but failing to take an approach that is targeted and precise makes people who need support, and the caregivers that support them, collateral damage. It puts everyone who relies on such care at risk — including older adults and people with disabilities or other long-term care needs — because most Medicaid home care is delivered through optional service categories that states are generally not required to provide.
And the timing could not be worse, because the home and community-based care system is already under strain. In 2025, 88 percent of community-based providers reported moderate or severe staffing challenges. More than six in 10 were forced to turn away new referrals. Meanwhile, more than 550,000 people with intellectual and developmental disabilities were already on states’ waiting lists to receive services, often for years or even decades.
New threats now stand to make everything worse as care providers are now bracing for the impacts of federal funding cuts on states’ funding for home and community-based programs. When this workforce shrinks, the impact reaches into the broader labor market, as family members leave jobs to fill gaps and employers lose workers they depend on.
The cruelest irony is that cutting these services does not save money. For example, supporting a person with an intellectual or developmental disability in their home or community costs an average of $70,000 per year. In a large, state-run institution, that cost rises to more than $395,000 per year.
Reducing access to home and community-based services simply shifts care to hospitals, public institutions and other more restrictive settings, all of which are far costlier. It also runs counter to the longstanding principle that people with disabilities should receive services in the most integrated setting appropriate to their needs.
The broader economic stakes are just as clear. As another example, in 2023, federal and state governments invested a combined $67 billion in Medicaid-funded home and community-based services for people with intellectual and developmental disabilities. That investment generated more than $169 billion in economic output. Said another way, for every $1.00 of state and federal funding invested, the broader economy generated an additional $1.50.
The answer to this problem isn’t to weaken these supports, it’s to strengthen them. If policymakers want to ensure Medicaid dollars reach the right people, our organizations are ready partners in that work. But broadly cutting off funding to entire categories of services in ways that harm the very people they are meant to serve — creating further instability in the caregiving workforce — will only exaggerate problems which Congress has sought to solve in a bipartisan manner.
We call on Congress and states to reject proposals that would further reduce Medicaid funding and instead invest in community-based services and the workforce that supports them.
Barbara Merrill is CEO of ANCOR. Kendra Davenport is president and CEO of Easterseals. Diane Wilush is interim president and CEO of United Cerebral Palsy.
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