Family Caregivers Shoulder Education and Medicaid System Failures
A new investigation from The Boston Globe finds uncounted kids denied their right to an education and debate rages over the Republican-led Medicaid proposal
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From The Boston Globe: “Autistic children denied schooling amid lack of federal funding”
[…]Every day in the United States, disabled children like Dante are being cheated out of an education, relegated to their homes for months on end because no schools will serve them, an investigation by the Globe’s Great Divide team has found.
Their public school districts have given up on teaching them, pledging instead to pay for them to attend schools elsewhere that offer more intensive support. But other options, which often include highly sought after private schools, can be near impossible to come by, leaving kids in the lurch for extensive periods of time.
There is no consistent way to count these children in such educational limbo; in many cases, they are still enrolled as full-time district students as they await new placements. But they are out there, according to the Globe’s reporting, in cities and small towns, in red and blue states, some shut out of school for months, others for years — their parents frequently forced to give up their jobs to become caretakers.
[…]Part of what’s driving the crisis is a supply-and-demand problem that has devastating and far-reaching effects, not just on disabled students and their families, but on entire school communities. The population of students with complex disabilities, including autism, has grown in recent years, but there are nowhere near enough trained special educators to meet the children’s needs, experts said. What’s worse, experts and advocates argue, is the lack of urgency to fix the problem. In a world replete with disasters, disabled children like Dante are often forgotten.
[…]This fiscal year, Congress appropriated $14.4 billion toward the education of 7.9 million disabled students — a commitment far short of its obligation. To meet its 40 percent pledge, it would need to allocate $31 billion more. (For perspective, federal funding for the Department of Defense this fiscal year was nearly $900 billion.)
Closing the gap could support more than 400,000 additional special education teachers and specialists nationwide, according to a budget note written under the Biden administration.
[…]Special education teachers and therapists typically aren’t paid enough for the training they’re expected to have or for the demands put on them. In addition to the instructional responsibilities of a general education teacher, special educators face the added pressure of legal compliance, spending extra hours on mandated paperwork and meetings. Burned out, they leave for less punishing jobs with equal or greater pay — a trend accelerated by the pandemic.
[…]There have been two glide path bills filed in Congress this year, including one in the House boasting a number of Republican cosponsors.
A spokesperson for the US Department of Education did not answer the Globe’s questions about President Trump’s position on the full funding of special education, but noted in a statement that his budget does not make any cuts to special education funding and said the administration “recognizes that the one-size-fits-all education system simply isn’t working — especially for American families and students with disabilities."[…]
• From The Hill: “The hidden casualties of Medicaid cuts: America’s family caregivers”
[This opinion piece was written by New Mexico Governor Michelle Lujan Grisham and National Alliance for Caregiving President and CEO Jason Resendez.]
[…]Across America, more than 53 million people are family caregivers like Herrera’s — parents supporting children with rare diseases, adult children assisting aging parents, spouses tending to partners with chronic illnesses. And more than 4 million family caregivers rely on Medicaid for their own health care coverage.
This invisible workforce forms the foundation of our nation’s long-term care system. Now, with the House passing a budget bill that slashes more than $1 trillion from Medicaid and the Senate Finance Committee advancing similar devastating cuts, these essential caregivers fear for the already-fragile support system that enables their critical work.
As a governor managing the frontline impacts of health care policy on American families, and as someone who has also been a family caregiver, I have deep concerns about how these proposed cuts would unravel the already fragile support system that makes caregiving possible for millions of families. This isn’t merely a budgetary abstraction. It is a looming humanitarian crisis with faces and names attached.
Take New Mexico, where approximately 40 percent of residents rely on Medicaid — the highest per-capita coverage in the nation. The proposed cuts would eliminate up to $2.8 billion in federal funding in the first year alone.
New Mexico isn’t alone. In 15 states, at least one-fifth of working-age adults in rural areas depend on Medicaid. Tellingly, eight of these 15 highly vulnerable states went for President Trump in the last election — a stark reminder that health care security transcends partisan divides.
For family caregivers, Medicaid often represents the only meaningful support available. As the primary funder of home and community-based services, it helps 4.5 million people with complex needs remain in their homes rather than face costlier institutional care. These services include respite care that gives exhausted caregivers essential breaks, training programs that teach specialized caregiving skills, and self-directed services that allow Medicaid enrollees to hire family members as caregivers. […]
• From : “‘Little Lobbyists’ Urge Senators to Oppose Trump’s Bill Cutting Medicaid”
Landry Bell, a 1-year-old boy who was born with Down syndrome, […] was among a group of children with serious medical needs who crisscrossed the Capitol with their parents urging senators to vote “no” on the sprawling Republican bill carrying President Trump’s agenda. The legislation would cut deeply into Medicaid to help pay for large tax cuts that would benefit businesses and the richest Americans.
The Senate version of the legislation would make even more aggressive cuts to Medicaid than the version of the legislation that passed the House last month. Those proposed reductions, and the elimination of some clean-energy tax credits, are among the most contentious provisions driving debate on the bill among Republicans, as party leaders push to complete it and send it to Mr. Trump’s desk within weeks.
[…]The Little Lobbyists formed in 2017 during Mr. Trump’s first term to push back against Republican efforts to repeal the Affordable Care Act, taking to Capitol Hill to demand that lawmakers oppose the move. Their successful campaign to save the law was part of a broader backlash against the proposal, which was driven in large part by major health care lobbies, like hospitals and insurance companies, as well as patient groups worried about losing insurance coverage.
This year, the bigger lobbying players have been more muted about the sprawling Republican policy measure that Mr. Trump and his party are calling their “big, beautiful bill,” which Democrats decry as an abomination. There are fewer television ads and demonstrations, and fewer furious public statements from health provider groups warning about the potential effects of the cuts.
But the little ones are out in force. About two dozen children and their family members made their way through the halls of Congress this week to make their case against the bill.
[…]Though the measure would not directly impact services that medically complex children receive, their families have mobilized against it, fearing that some of the Medicaid cuts could reverberate through the program, ultimately making it more difficult and costly for them to get the care they need.
[…]One key benefit available through state Medicaid programs is home-based care for people with long-term care needs. Medicaid would continue to cover care in a nursing home, but Ms. Cravins wants to keep her son at home with her. Lawmakers might also find the money some other way — like cutting education funding or raising taxes — but the families that met with senators this week were not willing to wait and take that chance.
Ms. Orlowski said some parents of children with disabilities, including those who need to be monitored around the clock, worry their loved ones won’t receive the intensive care they need in a nursing home. “We have heard this from parents: ‘And they’ll die there,’” she said.[…]
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Wonderful newsletter! An efficient snippet of some really big issues effecting our community.