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Catherine Thibedeau is the executive director of Independence Advocates of Maine, a regional nonprofit that supports people with intellectual and developmental disabilities.
As the fight over reconciliation moves to the U.S. Senate, Mainers with intellectual and developmental disabilities and their families are watching with growing alarm as Medicaid funding — and the crucial services it makes possible — is on the chopping block.
Here in Maine, Medicaid funds essential services that support for nearly 6,000 Mainers with intellectual and developmental disabilities to live, work and thrive in their communities through home- and community-based services waivers. These services make possible some of the most basic necessities. These supports enable people with disabilities to find work, live in their own apartment, and carry out the most fundamental activities of daily life.
Meanwhile, investing in these supports make it possible for families of people with intellectual and developmental disabilities to remain in the workforce while ensuring their loved one receives proper care, which in turn prevents them from having to rely on social safety net programs themselves.
Although funding cuts currently under consideration may not explicitly target disability services, they could create enormous pressure on Maine’s state budget. When federal funding shrinks, states must make painful cuts to optional services like those that support people with I/DD.
Unlike the care delivered in institutional settings, the Medicaid HCBS program is considered optional under federal law. This is despite the fact that supporting people in their homes and communities is significantly more cost-effective than institutional alternatives. Spending data shows that supporting someone with I/DD in the community costs an average of just $49,764 annually, compared to $313,188 for institutional care.
For years, we’ve been seeing just how challenging it is to deliver high-quality services to everyone in need with the current levels of funding. Because reimbursement rates in the Medicaid program have failed to keep pace with the cost of delivering care, HCBS providers lack the resources to compete for labor against other hourly wage industries such as fast food and retail. In turn, 90 percent of providers experienced moderate to severe staffing shortages in the past year and another 69 percent were turning away new referrals, according to a 2024 survey conducted by ANCOR.
It’s no wonder, then, that more than a half-million Americans with I/DD are languishing on states’ waiting lists for Medicaid-funded services, including nearly 2,300 people here in Maine. Cuts to Medicaid funding will only exacerbate this existing crisis of access to care.
At my organization, Independence Advocates of Maine, we’re forecasting just how problematic any cuts to the federal Medicaid program would be. Reduced funding will have a direct impact on workers’ wages and the basic care people receive. Direct care workers are leaving the profession they love because their wages, which are tied to Medicaid reimbursement rates, are far from adequate. The domino effect of Medicaid cuts will ultimately have a debilitating and devastating impact on the most vulnerable members of our communities, whose basic needs will not be met.
Sen. Susan Collins has a renewed opportunity to be a champion for people with disabilities by opposing these devastating cuts. In April, she voted with Democrats opposing the budget resolution that would likely require cuts in Medicaid programs. Now, with the Senate aiming to pass its version of a reconciliation package by July 4, the senator faces a critical decision. Will she support a bill that slashes essential programs like Medicaid, or will she stand up for the Maine families who rely on these services and have no meaningful alternatives?
On behalf of the thousands of Mainers with I/DD, and their families, and the more than 9,000 direct support professionals who provide access to the community and help people with I/DD live a meaningful life, we urge Collins to vote against any reconciliation bill that includes cuts to Medicaid.
