The Unseen Heroes: A Call to Action for America's Caregivers
In the shadows of our bustling cities and quiet suburbs, a silent crisis is unfolding. It's a crisis that affects not just the individuals it serves, but the very fabric of our communities. I'm talking about the caregivers you've never heard of, the unsung heroes who toil day in and day out to ensure the well-being of those with intellectual and developmental disabilities, older adults, and people with disabilities. These caregivers, often referred to as direct support professionals, are the backbone of our home and community-based care system, a system that's under severe strain.
What makes this situation particularly fascinating is the paradox it presents. These caregivers are not just providing essential services; they're enabling families to stay in the workforce, employers to retain valued workers, and communities to remain strong and stable. Yet, their very existence is being called into question due to misguided administrative and congressional actions aimed at targeting waste, fraud, and abuse in Medicaid. This is a critical issue that demands our attention and action.
From my perspective, the crisis lies in the fact that these caregivers are being painted with a broad brush, their integrity questioned, and their services at risk. Every dollar lost to fraud is a dollar taken from a family that genuinely needs care, but the collateral damage extends far beyond that. It puts everyone who relies on such care at risk, including older adults and people with disabilities or other long-term care needs. This is because most Medicaid home care is delivered through optional service categories that states are generally not required to provide.
One thing that immediately stands out is the timing of this crisis. The home and community-based care system is already under strain, with 88% of community-based providers reporting moderate or severe staffing challenges in 2025. More than six in 10 were forced to turn away new referrals, and over 550,000 people with intellectual and developmental disabilities were already on states' waiting lists, often for years or even decades. Now, new threats stand to make everything worse as care providers brace for the impacts of federal funding cuts on states' funding for home and community-based programs.
What many people don't realize is that cutting these services does not save money. In fact, supporting a person with an intellectual or developmental disability in their home or community costs an average of $70,000 per year, while in a large, state-run institution, that cost rises to over $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.
If you take a step back and think about it, the broader economic stakes are just as clear. 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, meaning for every $1.00 of state and federal funding invested, the broader economy generated an additional $1.50. This is a powerful reminder of the ripple effect that these caregivers have on our economy and society.
In my opinion, the answer to this problem isn't to weaken these supports, but 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 will only exacerbate the problems Congress has sought to solve in a bipartisan manner. This is a critical juncture, and we must act now to protect the caregivers and the services they provide.
Personally, I think it's time for Congress and states to reject proposals that would further reduce Medicaid funding. Instead, we should invest in community-based services and the workforce that supports them. This is not just a moral imperative, but an economic one as well. The caregivers you've never heard of are not just providing essential services; they're enabling families to stay in the workforce, employers to retain valued workers, and communities to remain strong and stable. It's time we recognize and support them for the heroes they are.
