Colorado Slashes Family Caregiver Pay
Plus: Scientists celebrate $50M in credible autism studies under Trump’s NIH but federal disability discrimination complaints skyrocket while enforcement is cut
Great news!
The Disability Defender, first introduced in the Medical Motherhood comic editorial Where is the Manual for This!?, now has her own zine! This 12-page, full-color issue tells the origin story of the superhero mom who rises to advocate for her medically complex child. Created by author and artist Lenore Eklund, The Disability Defender will make its debut at the first annual Astoria Zine Fest on October 11. Go check it out! Can’t make it? Email Lenore.
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 New York Times: “Despite False Claims, Trump Funnels Millions Into Credible Autism Research”
In late May, when the Trump administration issued a call for new research investigating the causes of autism, many scientists fearedthat anti-vaccine politics would decide which projects received funding.
The call for proposals seemingly gave health officials greater control than usual over the vetting process. Researchers had only weeks to propose studies.
And with Health Secretary Robert F. Kennedy Jr. spreading the debunked theory that vaccines caused autism, potential applicants worried openly that the Trump administration might bless only those research projects that would prop up its favored conclusions.
So scientists were cautiously optimistic this week to find that the 13 projects chosen to receive funding from the National Institutes of Health were nothing of the sort.
The projects, which were awarded a combined $50 million, drew on diverse sets of patient data. They were grounded in decades of credible autism science. And they planned to examine how strong genetic explanations for the disease interacted with environmental influences to determine someone’s risk of developing autism.
[…]Judith S. Miller, an associate professor at the Center for Autism Research at Children’s Hospital of Philadelphia, helps lead a team that was awarded funding to examine the interplay of genetic and environmental factors related to autism.
[…]“We have known there’s a big genetic component, and that genetics account for about 80 percent of the identifiable causes of autism,” Dr. Miller said. “But even when we know the genetic cause, that doesn’t really tell us very much about the outcome, or how to specifically help that individual.”
[…]Researchers will be allowed to guard patient data closely, Dr. Miller said, dispelling fears that arose in the spring over the idea of a federal registry of autistic people.[…]
• From The Lawton Constitution: “Colorado families caring for disabled adults to see cut in Medicaid pay”
Colorado families paid by Medicaid to provide around-the-clock care for adults with disabilities will do so with about 8% less funding starting next year under one of the cuts meant to close the state’s budget hole
For years, family caregivers in Colorado received a higher reimbursement from Medicaid than “host homes,” where a handful of people with disabilities live with one or more people in charge of their care, said Deana Cairo, a Boulder resident who has two adult children with developmental disabilities.
That higher rate recognized that host homes typically accept people who don’t need as much support, while those who need constant one-to-one supervision typically get care from their parents or relatives, she said. But the state now will fund family caregivers at the same rate as host homes.
Cairo’s husband stays home with their 24-year-old son Ryan and 20-year-old daughter Allison, but also has to hire help with the money Medicaid pays because one person can’t supervise both young people at all times.
[…]Colorado faced a $783 million budget gap this year because of federal tax changes in H.R. 1, known as the “Big Beautiful Bill.” The legislature partially closed the gap, then gave Gov. Jared Polis authority to come up with $249 million in cuts and sweeps from other funds into the state’s general piggy bank. About $79.2 million came from the Department of Health Care Policy and Financing, which administers Medicaid in the state.
[…]Paying family caregivers the same rate as host homes accounts for a relatively small segment of the savings, at about $1.5 million in the current budget year. But parents of adult children with severe disabilities said the cut will make already difficult situations harder.[…]
• From KFF Health News: “Disability Bias Complaints Peak as the Office That Investigates Them Is Gutted”
Families filed nearly 23,000 federal civil rights complaints against schools in fiscal 2024, the highest number ever.
That includes about 8,400 cases involving allegations of discrimination against students with disabilities, who have struggled to recover academically from the pandemic.
[…]But pleas for federal intervention are in limbo as President Donald Trump’s administration moves to dismantle the Education Department.
[…]“We had problems already, and now we are going to have more problems,” said Hannah Russell, a former special education teacher who works with parents in North Carolina trying to obtain educational services for their children with disabilities. The civil rights office is “the only thing that upholds accountability.” […]
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