Bad payments to autism clinics, DD services in Minnesota total $90 million, Trump administration says
Plus: Connecticut’s outdated IQ rule; early intervention inequities; energy bills for medical equipment leave one mom without hot food; and more
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Politico: “RFK Jr. announces 'the largest autism fraud bust in American history' and it’s in Minnesota”
The Department of Justice said Thursday it has arrested and indicted 15 people in Minnesota for fraud schemes involving $90 million in Medicaid funds.
[…]Health Secretary Robert F. Kennedy, who appeared at the press conference alongside Oz and Assistant Attorney General Colin McDonald, said the arrests were “the largest autism fraud bust in American history.”
McDonald said the accused had stolen money intended to house people who are homeless; to provide services for children with autism; and to help people with disabilities live independently.
Two of the defendants indicted Thursday were accused of paying kickbacks to parents who brought their children to autism centers where the children were diagnosed with the neurological condition, “regardless of medical necessity,” and then billed for autism services that were never provided, McDonald said.
One patient who was supposed to receive around-the-clock care but didn’t was later found dead, McDonald said.[…]
• From KFF Health News: “Kids Keep Getting Stuck in Hospitals, Even After Being Cleared for Discharge”
[…]In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.
She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. […]
“It’s definitely a national problem,” said Elaine Lin, a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ Section on Home Care. “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”[…]
• From Inside Investigator (Connecticut): “Amendment to DDS eligibility bill delays change in ID definition”
When HB 5557 was first proposed last legislative session, it was intended to immediately replace Connecticut’s IQ-based definition of intellectual disability (ID) with a more comprehensive definition provided by the DSM-5. Before its passage, however, it was amended to give DDS officials another year to draft a report outlining recommendations for a new definition, an implementation timeline, and an estimate of the cost to the state.
“That’s disappointing,” said Kelly Glaze-Capuano, whose son, Alex, has been diagnosed with ID but denied DDS services. “DDS has been doing this for a long time, and if a lay person such as myself knows what the regulations are for the definition in other parts of the country, they should be well aware of the discrepancy between our state and others.”
At least 43 other states have statutory definitions of ID not predicated on IQ, while Connecticut’s current definition stipulates that a person must have an IQ of 69 or below to receive services. This means parents of disabled children can be denied eligibility based on a single IQ test, even if they have an overwhelming body of evidence that would otherwise show their child’s disability. […]
• From The Times (U.K.): “I could be earning £130,000 but I’m on benefits fighting for my child”
[…]I said yes to what should have been the dream job, then went home and barely slept for a week. Eventually I called and said I was sorry to mess them around but I didn’t have the time or bandwidth to do the role justice. I’ll come back to you when I can, I told them. But that has never been possible.
My four-year-old daughter, you see, was born — after a straightforward pregnancy — with cerebral palsy.
[…]When you see the system up close you realise there is a crisis, just not the one some people imagine. I estimate I’ve spent at least six months just filling in forms for Romy to get her the help she needs — help that keeps being turned down by the local authority (LA). As a result I’ve gone from being a person who had a high-flying career and paid tax to one who has effectively been taken out of the workforce while trying to advocate for her daughter.[…]
• From BBC: “'I've given up eating hot meals to pay energy bills to keep my son alive'“
[…]In order to keep all those machines powered, she says she was forced to make cuts after soaring energy prices left her facing bills of more than £400 a month, adding "I can't switch anything else off".
[…]She turns lights off and no longer cooks hot meals, only eating one meal of Marmite sandwiches and fruit every day.
[…]“I feel shame that I have to claim benefits from the government, because I’ve worked hard all my life and now I can’t.
“I just wish people could see how hard it is for families like mine, that we’re not sat around taking payouts from taxpayers pockets, that we work really hard and we do have value.”
[…]And she’s not alone.
Disability charity Scope estimates disabled households need an extra £1,095 each month on average to cover costs.[…]
• From JAMA Pediatrics: “Inequities Along the Early Intervention Care Cascade for Very Preterm Infants”
[…]In this cohort study of 7169 very preterm infants, significant racial and ethnic inequities were identified at multiple points along the Early Intervention Care Cascade, with minoritized infants having a significantly decreased odds of referral, evaluation, and receiving an Individualized Family Service Plan.[…]
Medical Motherhood brings you independent, ad-free news and information each Sunday for raising disabled and neurodivergent children.
Free subscribers help this work reach more families. Paid subscribers make it sustainable. Get the newsletter in your inbox, give a gift subscription or become a paid supporter to help keep this resource available to everyone.
Not ready for a subscription but like what you read here? You can also buy me a coffee.
Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.