Autism registry sparks many questions
Plus: A reprieve for Arizona and Idaho paid parent caregivers; A new study finds a quarter of disability families have higher medical costs; SCOTUS case could wipe out accommodations
It was another yo-yo news cycle this week.
CBS News first reported that “…a new disease registry is being launched to track Americans with autism.” This was based on comments from The National Institutes of Health (NIH) Director Dr. Jay Bhattacharya on Monday.
(Side note: Despite my digging, I’m still not clear where exactly Bhattacharya said this. CBS called it a “a presentation to a meeting of the agency's outside advisers,” STAT called it “an all staff meeting” and ABC said it was a “NIH council meeting.” Those are all pretty different things! But I digress.)
The autism registry was supposedly going to be fed by a dragnet of data from “… records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers…,” according to the CBS piece.
But by Thursday, STAT reported that a Health and Human Services spokesman said that they were not going to put together such a registry, but rather inject $50 million into autism research.
Before all of this, I was not aware that the National Institutes of Health has several disease registries. Here’s the one for cerebral palsy, for example. They are used to connect people with information about their particular disorder and to easily connect researchers to a pool of potential candidates.
Importantly: “Individuals provide information about themselves to these registries on a voluntary basis,” reads the NIH website’s FAQs.
I reached out to NIH to ask if that would be the case for the proposed autism registry as well, but they did not get back to me. Perhaps that is because there won’t actually be a new autism registry?
The Autistic Self Advocacy Network is at least one organization that is not reassured by all the back and forth.
“We continue to have many unanswered questions about what data is going to be collected under this project, whether people’s personal information will be protected, and how it will be used,” ASAN said in a statement. “If the data provided to researchers is actually deidentified — meaning that it is scrubbed of information that could be used to identify individual people — then it is normal for data to be linked together from multiple sources, and to be used for this kind of research purpose without requiring the consent of the people whose data is collected.”
But, the autism organization continued: “Given everything this administration is saying and doing about autism, privacy, and public health, we have every reason to distrust this initiative under current leadership at HHS.”
In contrast, the National Council on Severe Autism’s President Jill Escher this week put out a very detailed FAQ on what the administration has gotten right about autism so far.
How about you? Are you worried about this? Or grateful that autism is getting the attention and funding it deserves? I’m experimenting this week with leaving the comments on this post open to all — not just paid subscribers. If Medical Motherhood can be a respectful place to debate these issues, I’m happy to continue offering a space to do that.
Request for prizes
The Medical Motherhood Games is coming up! This annual contest asks readers to describe their own awesome “feat” that they “won.” This is a wonderful way to recognize work that too often goes unappreciated and unnoticed. Last year, we were able to source several cool prizes from our community. If you would like to offer something — a book, a gift certificate, a service, artwork, etc. — to contest winners, please reach out to me. Your generous contribution will be celebrated in the contest post, unless you wish to remain anonymous. Look for more contest details in next week’s post. Thank you!
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Phoenix New Times: “Parents rejoice as lawmakers avert disabilities program funding crisis”
With a stroke of a pen on Thursday afternoon, Gov. Katie Hobbs allowed 60,000 families to exhale.
Hobbs signed a bill that steered a crucial government agency away from a fiscal cliff. Entering the year, Arizona’s Division of Developmental Disabilities was short $122 million, with money set to run out May 1. Without an infusion of funds, many Arizona families — particularly those that benefit from the Parents as Paid Caregivers program (PPCG), which pays parents up to 40 hours a week to care for their severely disabled children — would have been left in the lurch.Instead, after months of sniping, Hobbs and Republicans in the Arizona House of Representatives struck an 11th-hour compromise Wednesday night to fund the program through June 30.
[…]To Brandi Coon, the co-founder of the Raising Voices Coalition, which advocates for the PPCG program, the Wednesday night bargain was “a miracle.” […]
• From the Idaho Capital Sun: “Federal government extends Idaho parental disability caregiver program”
A program that lets Idaho parents and spouses serve as paid caregivers will remain, at least until federal regulators potentially approve Idaho’s request to end the program.
[…]Federally approved during the pandemic as a way to reduce COVID’s spread and address a shortage in the typical disability caregiver workforce, Idaho’s federal waiver that allowed the program was set to expire in March.
In November, the Idaho Department of Health and Welfare announced it would attempt to end the program earlier, saying fraud and abuse contributed to higher program costs and enrollment levels, the Idaho Capital Sun previously reported.
The Idaho health agency is still seeking to end the program.
[…]Nathan Hill, an Idaho disability advocate and paid caregiver for his son who has disabilities, told the Sun the program’s early termination would affect children and adults with disabilities who need help with day-to-day activities.
[…]State health officials have publicly released little information about the fraud and abuse claims, public records request responses reviewed by the Sun in January showed. […]
• From JAMA Network: “Health Care Cost Concerns and Hardships for Families of Children With Disabilities”
Families of children with disabilities report more health care–related financial problems than families of children without disabilities. Their families are also more likely to report inadequate insurance coverage.
[…]Among the 22 670 children aged 5 to 17 years in the analytic sample representing 53 586 children annually, the overall prevalence of disability among children aged 5 to 17 years was 17.4%. […] Families of children with disabilities were almost twice as likely to experience any of 6 financial hardships than families of children without disabilities. […] Families of children with disabilities had more difficulty paying medical bills […] and were more likely to be very worried about medical expenses. […] These families also experienced higher rates of delayed and forgone care due to cost compared with families of children without disabilities.
[…] recognizing that nearly one-fourth of families of children with disabilities face financial hardships, worry about the cost of health care, and/or delay or forgo health care for their children with disabilities should be a call to action to improve insurance adequacy.
• From Disability Scoop: “Supreme Court To Hear Case That Could ‘Gut The ADA And Rehabilitation Act’”
The U.S. Supreme Court is set to consider a case that may have major implications for the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.
The high court will hear arguments in a matter known as A.J.T. v. Osseo Area Schools on Monday. The case centers on whether students with disabilities must show that schools acted in “bad faith or gross misjudgment” in order to claim that their rights were violated under the ADA or Section 504.
But in a last-minute twist, the litigation is now about much more than school-based discrimination claims.
The case was brought by the parents of Ava Tharpe, a Minnesota teenager who has a severe form of epilepsy known as Lennox-Gastaut Syndrome. She is unable to attend school in the morning because her seizures are most frequent during that part of the day. As a result, her parents wanted their school district, Osseo Area Schools, to provide instruction into the evening so that Tharpe could have a full day of school beginning at noon, but the district declined the accommodation.
[…]Roman Martinez, Tharpe’s attorney, said the ramifications of the school district’s argument could be seismic for people with disabilities.
“The district’s new arguments would revolutionize disability law, stripping legal protections from all victims of disability discrimination and essentially eliminating the duty to provide reasonable accommodations,” Martinez told Disability Scoop.
Kay Villella, a spokesperson for the Osseo Area Schools, said the district is “committed to the principles and the ideals” of IDEA, but could not comment specifically on Tharpe without permission from her parents.[…]
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