Florida's $800M disability services oversight; Debate over 'profound autism' flares; Colorado's Medicaid under strain
News roundup for the week of Nov. 26
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Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
[…]The move has been good for [Valerie] Gonzalez in some ways. She said Colorado’s autism community is more tight knit than in California. But when it comes to finding consistent treatment and managing her family’s time, new challenges have developed.
“It's unstable because of the constant changes with (applied behavior analysis) therapists, I would say we had over six changes,” she said.
[…]Both of the Gonzalez children were dropped by their previous clinic in October because their therapist left the company.
These days, that’s a common occurrence plaguing the autism care industry. Providers say the state’s Medicaid program underpays for services, contributing to closures, employee burnout, and financial stress among clinics.
Parents say that’s now trickling down to affect families. Dozens of families were abruptly told to find new therapists for their children earlier this year, when Hopebridge, a company with locations in nearly a dozen states, closed 6 of its 8 Colorado offices.
[…]Parents worry about the future of their autistic children and if resources will exist for them.
[…]Autism care providers said clinics in Colorado mainly focus on early intervention treatment with children because it’s easier to make a difference in a child’s life than an adult’s. On top of that, the state doesn’t reimburse providers for adult care as much as it does for children. That’s led to clinics cutting or, in most cases, completely dropping adult care from their services.
Many parents who are either waiting for spots to open up or worried their child’s current provider will close are awaiting a November 20 hearing at the state legislature, when Colorado’s Medicaid division is scheduled to discuss how much they want lawmakers to raise provider reimbursement rates in the upcoming session.
• From The Washington Post: “A rift over ‘profound autism’ reveals a community’s deeper divide”
Public perceptions of autism have come far in the 80 years since Austrian American scientist Leo Kanner first described a neurodevelopmental childhood disorder causing “an innate inability to form the usual, biologically provided contact with people.”
Against a backdrop of a burgeoning neurodiversity movement portraying wide variations in human behavior as differences, not deficits, many autistic adults have come to see their traits as a gift and source of pride.
Yet parents such as Maria Leary, the mother of two autistic, nonverbal sons — one of whom frequently injured himself and others before his death in 2018 — fear the neurodiversity revolution is leaving her family behind.
“You see happy videos of the great accomplishments of people with autism who get to go to work and play in basketball games,” says Leary, who is also a New Jersey disability consultant. “And, of course, that’s what I want for my kids. But that’s not my reality.”
Leary is on one side of a debate that probably will heat up in coming months as advocates seek different outcomes from Congress’s review of the Autism Collaboration, Accountability, Research, Education and Support (Autism Cares) Act of 2019.
At the heart of the divide is a deceptively simple phrase: “profound autism.”
Parents such as Leary believe recognizing some people as having profound autism would help target more research and support for children like theirs who are nonverbal, intellectually disabled and in need of constant supervision. In a paper in the journal Public Health Reports this year, researchers estimated that nearly 27 percent of 20,000 autistic 8-year-olds whose records they analyzed could be categorized as having profound autism.
Leaders of the Autistic Self Advocacy Network (ASAN), however, reject the phrase, calling it dangerous and misleading.
“We are concerned about the human and legal rights of the people who would be so labeled,” ASAN Executive Director Julia Bascom said in an email. Devoting funds to “profound autism,” she wrote, “would result in research aiming to ‘prevent’ or ‘cure’ autism, and a focus on more restrictive services.”
[…]Julie Greenan, a nurse from Buffalo, met Leary a decade ago at the Kennedy Krieger Institute, where Greenan’s son Sam, then 11, was also being treated for behavioral issues, including kicking, scratching and biting himself and others.
Greenan has an unusual perspective, in that all five of her children have been diagnosed with autism, yet they have a range of abilities and needs. Now 21, Sam is living in a group home while her oldest, at 24, is a college graduate with a job in his chosen field of musical theater.
Greenan blames the 2013 change in diagnostic rules for the discord in the autism community. “Before that, we didn’t have to fight each other about who gets services,” she says. “Saying there can’t be different levels of autism is like saying … other people’s experiences don’t matter.”
Many parents of children like Greenan’s son Sam, who she says can be violent or self-injurious and needs 24/7 supervision, say they desperately need more specialized services including long-term housing options. ASAN insists that autistic people should be able to live “in the same places as non-disabled people,” instead of restrictive institutions, yet other observers say the small-scale, community-based formula is failing because of a lack of resources and staff.
[…]Federal support for autism is already relatively limited, with $369.7 million in annual Autism Cares funding vs. $7.8 billion to the National Cancer Institute alone and $28 billion annually for HIV, and the adult self-advocates and parents’ groups have conflicting goals.[…]
• From The Orlando Sentinel: “Florida leaves $800 million on the table for disability services, advocates say”
Florida officials responsible for providing services to people with lifelong disabilities have allowed nearly $800 million in state and federal matching funds to fall through the cracks in the past two years, according to a budget analysis by a statewide advocacy group.
That’s enough to give the 23,000 people on a waiting list maintained by the Agency for Persons with Disabilities the critical services they need to live with their disorders, which include autism and cerebral palsy, the advocates say. The money could be used for medical treatment, therapy, housing and help people maintain a level of independence and stay out of institutions.
The 34,000 people who do receive those services – a number that hasn’t changed much in two decades – face cuts each year to the services that help them live fuller lives.
“They always blame it on a lack of funding, then fire the director,” said Ven Sequenzia, who served as president of the Autism Society of Florida for 18 years and has a 40-year-old adult daughter with autism, epilepsy and cerebral palsy. “It’s frustrating. It’s the same crap every year.”
[…]Digging into state budget records, The ARC of Florida, a statewide nonprofit that advocates for services for people with disabilities, discovered $287 million in budgeted money for disability services that went unspent. That money could have drawn an additional $496 million in federal matching dollars, ARC said.
[…]Having those services available over the last seven years when she was raising her twin daughters, who have cerebral palsy, would have improved their quality of life immeasurably, said Angela Williams of Seminole County.
Her daughters have been on the waiting list since they were 16. They are now 23.
“When I initially applied … I was seeking assistance with basic medical supplies for the twins: briefs, gloves, tub rails, linings for their beds and personal care assistants,” Williams said.
Williams said she missed job opportunities because she had no one else to retrieve the girls when they got off their school bus. And she relied on church members to help pay for their medical supplies.
[…]“I have done everything imaginable to ensure my daughters have a viable life and not having access to the benefits from APD has been a hindrance,” Williams said. “I want other families who are just beginning this journey with their special needs child to have an easier time.”
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