The Fight to Stay Home
A continuing legal challenge to disability rights headlines a week of rising need, long waitlists, and family burnout while glimmers of hope shine in Georgia and California
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Fort Worth Star-Telegram via Disability Scoop: “The Fight To Stay Home: How A Lawsuit Could Upend Disability Care”
In his homeschool curriculum, 12-year-old Luke Lunday is learning about Section 504, a cornerstone of disability rights.
Championed by disability rights activist Judy Heumann, Section 504 of the Rehabilitation Act is responsible for what’s known as the integration mandate, which requires that people with disabilities have access to services in their homes and communities, rather than an institution.
[…]A lawsuit filed by the state of Texas is challenging this cornerstone of disability rights; advocates say it could eliminate the kinds of services that people like Luke rely on for basic needs.[…]
• From WRDW (Georgia): “Ga. Senate passes budget with more for disabled, less for hungry kids”
[…]New Option and Comprehensive Support waivers pay for in-home supports, including help with daily care, transportation and job coaching. […] The Senate moved its budget changes with a unanimous committee vote Wednesday, advancing a nearly $39 billion plan for the next fiscal year. Senate budget chair Blake Tillery said the proposal includes about 1,200 new NOW/COMP waiver slots, even though the waiver waiting list still tops 8,000 people.[…]
• From The Telegraph (U.K.): “One in eight parents now reports their child is disabled”
One in eight parents now says their child has a disability as new data suggests behavioural issues are driving up Britain’s benefits bill.
[…]This has almost doubled since 2015, when roughly 7pc of parents said their child had a disability, according to the department’s closely-watched Family Resources Survey (FRS).
It also comes amid a sharp increase in young people being diagnosed with behavioural issues as well as autism and ADHD.[…]
• From ChildTrends: “More Than 1 in 4 Children and Youth in Foster Care Have a Special Health Care Need”
More than one in four (27%) children and youth (birth to age 21) in foster care are reported to have a diagnosed Special Health Care Need (SHCN), compared to 21 percent in the general population, according to Child Trends’ update to analysis originally completed in 2020. Among children and youth in foster care with an SHCN—irrespective of age—the two most common SHCNs are “emotionally disturbed” (57%) and “other diagnosed SHCN” (59%). […]
• From FOX26: “FOX26 story sparks donations for 22-month-old special needs child”
FRESNO, Calif. (FOX26) — A developmentally challenged girl will soon have access to critical mobility equipment after FOX26 News shared her story and the need for donations.
• From WBUR: “My twin brother was disabled, but I don't consider myself a 'glass child'"
March is Cerebral Palsy Awareness Month and Developmental Disability Awareness Month, but as the twin brother of Danny, who had severe cerebral palsy and intellectual disabilities, I never need the reminder.
[…]A few years ago, a student asked me if I had “glass child syndrome.”
[…]Until I heard the term, I thought growing up with Danny had made me a less selfish and more mature person.
[…]It seems to me that many siblings identify with the term because they were taught to suffer in silence. The glass child concept names a pain that they could finally voice.
[…]But the more I read, the more I worried that the glass child metaphor was deeply problematic for disabled people, their siblings and their families. […] It pathologizes special needs families.[…] in an America that often keeps our special needs families in a state of perpetual crisis as they attempt to navigate under-resourced social support, medical and educational systems, so-called glass child syndrome risks equating systemic societal failures to “bad parenting.”[…]
• From Psychology Today: “What Parents Need to Know About Mental Health Crisis Care”
[…]Approximately one in five fatal police shootings in the United States involves someone with a mental illness. Ryan [Gainer, an autistic child killed by police in California] was also Black, and Black children are six times more likely to be shot to death by police than white children. Disabled children—especially those who are autistic, neurodivergent, or in psychiatric crisis—are disproportionately at risk.
[…]As a child psychiatrist, I don't default to 911 or the ER. My approach centers on keeping children at home, where their families—not police or hospital staff—can care for and monitor them, with my medical support.
[…]If there is any chance police may come to a home during a crisis, I also advise clearing out gardening tools, kitchen knives, scissors, and any other household items that could be perceived as weapons. Ryan Gainer was holding a garden tool. Many people in mental health crises hold objects—not necessarily to harm anyone, but often because they are terrified.[…]
• From EuroMaiden Press: “She disappears as a person. Ukraine's first study of 160,000 mothers of disabled children”
[…]That mother is one of 609 surveyed for Strong Moms, the first comprehensive study of Ukrainian mothers of children with disabilities, released on 25 March by the NGO Epiprosvita foundation. Nobody had studied this demographic before. The findings explain why.
Ukraine has roughly 160,000 children with disabilities and no working system to help them or their families. That means 160,000 mothers are full-time carers—often with no respite, money, partner, educational, or social support. 15% contemplated self-harm or suicide within the last two weeks. 70% get zero hours away from caregiving. Zero. 45% have moderate or severe anxiety, 40% have symptoms of depression, and over half are burned out to the brink of exhaustion.
“The findings are heartbreaking. The situation is very, very dire,” said Niya Nikel, mother to disabled 7-year-old Eva and one of the report’s authors.[…]
• From JAMA: “Parent-Reported Chronic Pain in Children With and Without Developmental Disabilities”
[…]In this survey study of 263 168 children from the 2016-2023 National Survey of Children’s Study, the prevalence of parent-reported chronic pain was higher in children with any disability than in those without. The association was more pronounced in children having parents with lower parental education or income and in those who experienced more childhood adversities.[…]
Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Our paid subscribers make this work possible! Not ready to subscribe but like what you read here? Buy me a coffee.
Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.