Cuts threatened in Washington and Florida, but hope glimmers in New Hampshire and D.C.
Plus: the hidden toll of navigating complex pediatric care, the rise of for-profit residential placements for disabled children, and a debut novelist helping other parents feel less alone
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Yakima Herald-Republic: “Parents worry Washington developmental disabilities program is about to get axed”
Parents of children with developmental disabilities fear the unexpected and potentially imminent elimination of a Washington state support program they’ve come to depend on.
As the state deals with budget troubles, Washington officials say the Parent to Parent program’s future isn’t guaranteed past August.
[…]Parents believe the program, costing about $900,000 a year, is invaluable, and can’t be replicated or recreated if state funding disappears.[…]
• From Sierra Sun Times: “Congresswoman Debbie Dingell Introduces the Childhood Disability Benefit Fairness Act”
U.S. Representative Debbie Dingell (D-MI-06) has introduced the Childhood Disability Benefit Fairness Act, a bill that would fix the issue where disabled adult children are denied crucial Medicaid and related medical benefits because they never received Supplemental Security Income (SSI) before becoming eligible for Social Security’s Childhood Disability Benefit (CDB).
“Individuals living with a disability already face too many barriers without arbitrary administrative hurdles getting in the way of essential healthcare.[…”]
• From Teeside Live (United Kingdom): “Mum enjoying success with debut novel inspired by own experience of raising autistic daughter”
[…]‘Overwhelming Love’, by Leanne Thomas, was released on July 17 and within days had reached number five in Amazon’s disability fiction charts. Leanne’s debut novel follows Tizzy Reeves, a single mum raising her autistic, non-speaking daughter.
[…]Speaking of the success of the novel, Leanne said: “I never expected it to go further than my own support circle, so to see it in the number five spot in such an important genre to me still feels unreal. My intention was to help other parents feel less alone.[…”]
• From Irish Examiner (Ireland): “More than 80% of disabled children requiring residential care placed in for-profit facilities by HSE”
The [Health Service Executive, the Irish government’s health and social services agency] has admitted that placing disabled children with private care providers “is not a strategy” after it emerged that more than 80% of such cases end up in for-profit residences.
The Irish Examiner has learned that of the 296 residential placements provided by the State for disabled children, 242 of them, or 82%, are provided by commercial operators.
[…]For profit care is typically associated with problems in terms of staff retention and workforces that are paid less than their statutory equivalent.
[…]Advocates say the use of such accommodation should be a last resort, suggesting that many such placements could be avoided if earlier and more consistent treatment is given to allow the children to stay in their own homes.[…]
• From USA Today: “My son has cerebral palsy and epilepsy. No one gave us a road map”
[…]Children like my son represent less than 1% of children in the United States, yet account for more than 1/3 of pediatric healthcare spending. Our calendar soon filled with therapies and specialist appointments across two children's hospitals. Every specialist added another appointment to that calendar. None told us how to wade through it all.
Research shows 68% of families of children with medical complexityreport unmet care coordination needs nationally, compared with 40% of families whose children are less medically complex.
[…]Our pediatrician referred us to the Early Start Program through California's Regional Center system, the state's early intervention program for infants and toddlers with developmental delays. That system serves nearly 500,000 people through 21 regional centers statewide, yet navigating it remained one of our biggest challenges.[…]
• From Boca Raton Tribune: “County Hospital Drops Disabled Children Therapy, Parents Scrambling”
Options for pediatric care in Palm Beach County have taken another hit, with the recent announcement that Baptist Health South Florida will stop offering rehabilitative care for disabled children and infants at its Boynton Beach hospital, a separate medical center nearby and its offices in Wellington.
The news comes months after Jupiter Medical Center, another nonprofit operation, announced an end to its inpatient treatment for children in February.[…]
• From Courthouse News: “Parents of disabled child ask 11th Circuit to revive $100M trust theft class action”
The parents of a disabled child urged an 11th Circuit panel Wednesday to overturn an order stalling their claims against companies they say were complicit in a Florida nonprofit’s scheme depleting funds from the child’s medical care trust.
[…]The nonprofit filed for Chapter 11 bankruptcy in 2024 after an internal investigation revealed co-founder Leo Govoni transferred money from trusts under the organization’s administration by issuing loans to companies he controlled.
The accounts of more than 1,000 of the center’s 2,000 vulnerable and disabled clients were partially or entirely drained.[…]
• From WMUR (New Hampshire): “Health officials say cuts to nursing aid for disabled children being reversed”
[…]Executive councilors are calling out New Hampshire’s Medicaid managed care organizations after families of children with severe disabilities came forward to report what they described as arbitrary cuts and reductions in covered nursing care.
“A 4-year-old with a progressive neurological degenerative disorder, uncontrolled seizures and G-tube dependency saw their nursing assistant hours reduced from 60 to 45 to 21 hours over six months,” said Executive Councilor Janet Stevens.
[…]Gov. Kelly Ayotte called the cuts to nursing care made by the MCOs "completely unacceptable."[…]
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