Adults With Disabilities Should Have a Voice in Their Care
It’s been nearly a year since Congress passed House Resolution 1, a budget bill that included federal cuts to Medicaid that states must now address.
Because Medicaid is a partnership between the federal government and the state government, states must make a choice: increase their share of Medicaid funding or reduce services to make up for the cut in federal funding. Mosaic is advocating to protect services for people with intellectual and developmental disabilities (IDD) who need them, including the 5,000 individuals we support.
I have a mantra that I often share with our workforce: When we succeed, the people we support live great lives. It’s a reminder we all need to hear because, far too often, it’s the people most affected by decisions made in Washington, D.C., and statehouses across the country who get lost in the rhetoric.
Questions about whether Medicaid should pay for home- and community-based services (HCBS) remain part of the debate. States are required to provide certain services, but HCBS, like those Mosaic provides, are considered optional and historically among the first to be reduced when budgets are tightened.
Recently, the debate expanded, with some federal officials going so far as to say that families should step up to care for their loved ones and not rely on the government or Medicaid for assistance.
My response to that is they already are.
A recent AARP report shared that in 2024, 59 million family caregivers provided 49.5 billion hours of care, representing a total economic value of $1.01 trillion (exceeding Medicaid spending at $932 billion).
People are pushing themselves to their limits—physically, financially, and emotionally—trying to do it all.
Many people with disabilities require long-term care. Unlike acute care, which treats short-term conditions such as infections or broken bones, long-term care focuses on supporting and improving the lives of people with conditions that cannot be cured. For most people, long-term care is too expensive for an individual or a family to afford, even with full-time employment.
Imagine you’re a single mom of three—two teenagers and an adult son with a disability. Even working full-time, your paycheck isn’t enough to cover the specialized care that your adult son requires. But if you stay home to provide that care yourself, you lose the ability to provide the basics: food, water, electricity, and a roof over your family’s heads.
That’s where Medicaid comes in.
With Medicaid funding, they can continue to work full-time or even become a professional home provider to earn a paycheck and provide care for their loved one.
Additionally, suggesting that Medicaid funding not cover HCBS because their families should step up is not considering what the individual with disabilities wants their adult life to look like. They may want the opportunity to move out, hold a job, and integrate into their community. That is where HCBS are critical.
Financially, HCBS makes sense, costing a fraction of the cost of institutional alternatives. But equally important is that they are highly personal. As Mosaic’s President and CEO, I love seeing how people are living their best lives in their communities, thanks to the support they receive in home- and community-based settings.
Mosaic will continue to advocate for the investment in these services for everyone who needs them. After all, it is not just people who win when Mosaic succeeds, it is our country.
To join our efforts, visit Mosaic Allied Voices and become an advocate.