Disability Service Providers in State with Highest Need Fear Trump's Budget
Plus: “Love on the Spectrum” moms launch podcast; Pediatricians urged to pursue early genetic testing for I/DD kids
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From West Virginia Watch: “Federal budget proposals would cut programs for West Virginians with disabilities”
A budget proposal from President Donald Trump and the “One Big, Beautiful Bill Act” that is making its way through Congress contain cuts for disability services in West Virginia — a state with the nation’s highest rate of people with disabilities.
One in three West Virginia residents live with a disability, according to federal data.
[…]The president’s spending calls for the elimination of all University Centers for Excellence in Developmental Disabilities [UCEDD], including the one housed at West Virginia University, through funding cuts to the Administration for Community Living. Congress will vote on this when they consider funding appropriations later this year.
“The impact will be immediate,” said Lesley Cottrell, director of the WVU Center for Excellence in Disabilities, which provides free services to 340,000 West Virginians living with a disability and their families through a network of programs and six clinics.
The budget bill contains proposed cuts to Medicaid, which Cottrell said will also impact their services in West Virginia.
The center oversees the state’s only feeding and swallowing clinic. Cottrell said that without federal funding, the clinic won’t be able to serve patients, including children, who struggle to eat.
The programs around the state have also helped children with communication disorders interact with the world by using augmentative and alternative communication devices, supported individuals with traumatic brain injuries and helped people with disabilities find jobs.
[…]Several other disability-focused groups could see funding cuts because of the bill, including Disability Rights West Virginia.
“The proposed federal budget cuts to the protection and advocacy systems like Disability Rights of West Virginia will be disastrous for the state, persons with disabilities and public safety,” said Mike Folio, DRWV’s legal director.
The budget bill contains spending reductions for the federal departments of health and education, which would impact DRWV, according to Folio.
[…WVUCED’s] Cottrell said the funding cuts won’t just impact people with disabilities but could also weaken funding that supports respite care for families and programs that help parents whose children are awaiting a potential autism diagnosis.
“That’ll all be gone,” she said.
• From The Atlanta Journal-Constitution via DisabilityScoop: “‘Love On The Spectrum’ Moms Start Podcast”
Lise Smith and Nicci Smith aren’t related, but they have so much in common — far beyond their shared last name — that they feel like sisters. Both women appear with their oldest sons on Netflix’s Emmy Award-winning docuseries “Love on the Spectrum.”
In response to the countless messages they both receive from the show’s viewers, the women are now collaborating on a podcast titled “Talk to Me, Sis” to answer questions and share stories from various life experiences, including raising children with autism.
The podcast launched in March, a month before the third season of “Love on the Spectrum” released. New episodes are released every Thursday and are available on all podcast platforms.
[…”Connor] receives so many positive messages,” said Lise, who works as a design and sales consultant for Surface Providers in Alpharetta. “Connor has had some really honest moments, like his panic attack scene, that have inspired and resonated with viewers. We had no idea how much he’d help people. And I never imagined how many messages I’d receive, mostly from mothers asking questions, looking for someone to talk to.”
Nicci, of Saint Matthews, S.C., echoes Lise’s sentiments. After her son Tanner, 26, appeared in season two of “Love on the Spectrum,” he became famous overnight, bombarded with brand offers and speaking opportunities. Nicci, who had been a stay-at-home mom to her four children, including Tanner, was contemplating a return to her nursing career, but Tanner’s rise to fame, and the onslaught of direct messages, redirected her.
[…]When the women met in person […] at a cast get together, they felt like they’d known each other for years.
Both Lise and Nicci confided they had inboxes full of questions from viewers, mothers mostly, who wanted to know things like when their children were diagnosed with autism, what therapies they had, how the moms coped with the struggles and so on.
Trying to respond to all the messages felt close to a full-time job for both women. That’s when Nicci had an idea.
“I remembered feeling so alone with Tanner was a little boy, and I knew Lise felt the same,” said Nicci. “When our boys were diagnosed, Tanner at age 4 and Connor at age 5, there was nothing out there for us, no one to talk to, no support groups, no idea of what our future might look like. All those DMs we received were a catalyst to start a podcast, to answer all those questions collectively, and be a source of hope for other families. Lise and I both felt a call to do that.”[…]
• From Contemporary Pediatrics: “AAP updates guidance on genetic testing for developmental delay”
Global developmental delay (GDD) and intellectual disability (ID) affect an estimated 1% to 3% of children worldwide and are among the most common neurodevelopmental conditions encountered in pediatric practice. In response to the evolving landscape of genetic diagnostics, the American Academy of Pediatrics (AAP) has released updated clinical guidance outlining a structured approach to evaluating the genetic causes of GDD and ID.
[…]“Establishing a specific diagnosis early provides multiple benefits including prognostication, surveillance for disorder-related complications, accurate recurrence risk, and specific management,” the authors write. The report emphasizes that identifying a genetic cause can improve clinical care, guide family planning, reduce the need for additional testing, and offer access to condition-specific resources and clinical trials.
[…]Pediatricians are encouraged to evaluate the child’s developmental and medical history, family history, and physical examination—particularly focusing on dysmorphic features, growth patterns, and neurologic findings. Corollary testing such as vision and hearing assessments and brain MRI should also be considered, especially when specific syndromic features or neurological abnormalities are suspected.
If no clear diagnosis emerges from the initial clinical evaluation, the report advises moving to a hypothesis-free, or “agnostic,” testing strategy.[…]
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