Disability organizations warn of secret plan to defund IDEA Part D
Plus: A Republican medical mama's rationale for funding Medicaid; Justice for Maine disabled children threatened by lack of oversight, suit claims
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From New York Times Opinion: “I’m a Conservative. My Disabled Son Needs Medicaid to Live.”
I’m a registered Republican who just watched her party spend much of the summer pushing through new cuts to Medicaid. I’m also here to tell you why I’m an unlikely supporter of the program. My son’s life depends on government assistance. Recent cuts to Medicaid at both the federal and state levels mean millions of families like mine could soon be at a loss for how to care for our disabled loved ones.
[…]Caring for David is holy work, but it takes a village. His extensive medical conditions mean he meets the criteria for institutionalized care. But because of Medicaid, David is able to live at home, where he belongs, surrounded by people who love him.
North Carolina’s Community Alternatives Program for Children, or CAP/C, is a home- and community-based services waiver that provides essential services to more than 3,700 children like David across our state. Doctors’ appointments, surgeries, many therapies, adaptive equipment, specialized food, medical supplies, respite care workers (who provide temporary relief to caregivers) and more are all provided for him by Medicaid. I am even paid a living wage to care for my son. David’s life simply wouldn’t be possible without this program — which keeps him healthy and alive. Medicaid is David’s village.
The White House insists that the passage of President Trump’s domestic policy bill won’t affect programs like David’s. I know better. North Carolina’s CAP/C program is majority-funded by federal dollars. States must now consider how to meet anticipated budget shortfalls when federal Medicaid cuts take effect over the next few years.
[…]Yet even before the far-reaching impacts from the reduction of federal dollars will be felt, North Carolina state legislators have chosen not to fully fund our existing Medicaid program for the upcoming fiscal year, resulting in a $319 million gap.
[…]Parents of disabled children don’t have the time to hunt down details buried in evasive political jargon that have the potential to upend their lives. Moms like me are simply trying to keep our heads above water and keep our children alive. Life with a child like David is hard in ways I cannot fully explain — unless you have also cared for a medically fragile, physically disabled and intellectually impaired child 24 hours a day, seven days a week, for four years.
[…]How we care for our most vulnerable reveals what we believe about ourselves. I’m just one mother, and David is just one child. But this affects your neighbors. This affects you. At one point or another most of us will lose our independence, health, rationality and will. Eventually we will rely wholly on someone else to care for us. Dependence, weakness, need of others: These are features, not bugs, of the human experience.[…]
• From Portland Press Herald (Maine): “Civil rights groups file in court raising alarm over settlement changes for disabled children’s services”
A coalition of civil rights groups has filed a notice in federal court raising concerns about what they say is the weakening of a 2024 settlement between Maine and the federal government over services for disabled children through Medicaid.
In September 2024, the U.S. Department of Justice filed a federal lawsuit against the Maine government alleging that the state was violating the civil rights of disabled children.
Among the allegations was that the state had failed to invest in community-based health care for children, resulting in “unnecessarily segregating children with behavioral health disabilities in hospitals, residential facilities and a state-operated juvenile detention facility.”
[…]The lawsuit was settled in November 2024, with Maine agreeing to improve services for children. As part of the settlement, Maine would hire an “independent reviewer” to evaluate and approve state plans for improving the system, according to the court filing.
After Maine approved a contract with Inspired Consulting Group to provide oversight in April 2025, the contract was withdrawn after the Department of Justice altered the agreement, eliminating the requirement for an “independent reviewer.”
“Eliminating the Independent Reviewer’s role will have significant, negative consequences — it would hamper the court’s ability to determine the status of compliance, make it harder for the parties to identify and resolve systemic barriers to implementation and remove a critical mechanism for ensuring children and families receive the benefits of the agreement,” according to the coalition’s court filing.[…]
• From Disability Scoop: “Ed Department Preparing To Cut Millions In Special Education Funding, Advocates Warn”
Disability advocates say that the U.S. Department of Education could cancel hundreds of grants made under the Individuals with Disabilities Education Act in the coming weeks.
The awards in question are provided under IDEA Part D and fund everything from technical assistance and parent resource centers to personnel preparation for special educators. Collectively, the grants aimed at improving the education of students with disabilities could be worth hundreds of millions of dollars.
“No Part D grantee has heard for sure, or has seen anything in writing, (but) there is credible information flowing that points to (the Office of Special Education Programs’) plan to cancel hundreds of grants in a few weeks,” said Robyn Linscott, director of education and family policy at The Arc.
[…]“It has come to our attention that the U.S. Department of Education is considering the cancellation of all OSEP grants to CPRCs, PTACs and related Technical Assistance Centers in the coming weeks,” [a letter signed by more than 150 representatives of federally funded Parent Training and Information Centers, Community Parent Resource Centers and Parent Technical Assistance Centers] states. “We respectfully urge you to ensure that the administration and the Department of Education uphold Congress’s appropriations and release the designated funding. Eliminating these programs would not only undermine congressional intent but also jeopardize the essential services that families across the nation rely upon.”
The Education Department did not respond to a request for comment about the status of the Part D grants.
[…]But, in its first test before lawmakers, a key Senate panel soundly rejected Trump’s plan for IDEA late last month. The bipartisan vote to keep IDEA as is “stands in direct conflict with what ED is preparing to do,” said Denise S. Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families.
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