Disability Rights Face a Pivotal Week
DOJ challenges community living protections • Education Department shifts special education oversight • Tennessee judge blocks immigrant data sharing • Plus more disability news from the nation
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From National Public Radio: “DOJ memo stokes fear among disability advocates of a return to institutionalization”
The Justice Department released a memo this week that quietly calls into question decades of civil rights protections for Americans with disabilities and stirred fear and anger among advocates and families.
The memo, an opinion from the Office of Legal Counsel, argues that states do not have to provide in-home or community-based care to people with disabilities who need support. These services allow many disabled Americans to continue to live, learn and work at home or in their own communities, among family and friends.
“It is now the position of the United States government that people with disabilities don’t have a right to be part of their communities,” says Alison Barkoff, a health law and policy professor at George Washington University who led disability law and policy efforts during both the Obama and Biden administrations. “I can’t overstate how significant this change in position is.” […]
• From DisabilityScoop: “The Ed Department Is Outsourcing Special Education. Here’s What That Means For Students With Disabilities”
The U.S. Department of Education’s decision to transfer its special education and civil rights offices is likely to cause confusion and disarray, advocates warn, as a key Senate panel considers a vote to block the move.
The Education Department said last week that many responsibilities of its Office of Special Education and Rehabilitative Services, or OSERS, will go to the Department of Health and Human Services while much of its Office for Civil Rights, or OCR, which handles complaints of disability discrimination in schools, will shift to the Department of Justice.
The plans, which have been in the works for more than year, are part of the Trump administration’s effort to close the Education Department. However, without approval from Congress, the Education Department is using what are known as “interagency agreements” or IAAs to offload management of major functions while retaining statutory responsibilities. […]
• From News From the States: “Judge issues restraining order in doctors’ challenge to TN plan to report disabled immigrant kids”
A Nashville judge on Wednesday swiftly issued a temporary restraining order preventing the Tennessee Department of Health from turning over the names of about 400 disabled and critically ill kids to a state immigration agency that cooperates with federal immigration enforcement.
Davidson County Chancellor Patricia Head Moskal issued the order within hours of the filing of a lawsuit by three Tennessee physicians. The doctors are challenging the department’s notice to families that their child’s information will be shared with the Tennessee Centralized Immigration Enforcement Division after June 30 as a condition of of continued enrollment in a public safety-net healthcare program.[…]
• From Governing: “School Districts Are Struggling to Keep Up With Surging Special Education Needs”
[…]Since 2015, local schools have lost tens of thousands of students. But over the same period, the number of students with disabilities has increased significantly. Special education students now make up almost 20 percent of students countywide – significantly more than a decade ago.
If the trends continue at the same pace as the last decade, students with disabilities would make up 25 percent of the student population by 2035.[…]For many districts, the crisis is felt most acutely in their budgets. The fiscal crunch manifests in a couple of different ways.
For one, as the total number of students declines, districts are given less funding. Then, with less money coming in, the number of kids with disabilities they serve has increased. That’s a problem, because the cost of special education services is steep.Cajon Valley, for example, spends nearly three times as much to educate a student with disabilities compared to a student who doesn’t receive special education services.[…]
• From Kentucky Public Radio: “Families, patients of disabled Kentuckians demand renewed clinic funding at hearing”
[…]Kentuckians with intellectual and developmental disabilities and their caregivers crowded Frankfort committee rooms Wednesday as they urged lawmakers to reverse massive funding cuts to the Lee Speciality Clinic in Louisville.
The clinic, which provides comprehensive medical, dental and behavioral care to the highly vulnerable population, is set to sharply curtail its outpatient care in July, eliminating services for more than 1,000 disabled Kentuckians.
Parents, family members and those with disabilities overflowed the Medicaid Oversight and Advisory Board meeting to beg lawmakers and Democratic Gov. Andy Beshear’s administration to not treat them as a “pawn in this political game between the executive and the legislature.”[…]
• From WLWT: “Ohio Gov. DeWine signs Joshua Alert bill for missing children with autism”
An alert system dedicated to finding missing children with autism officially became law in Ohio on Thursday.
Ohio Gov. Mike DeWine said he signed the Joshua Alert bill into law, clarifying the statewide emergency alert system in cases of missing autistic or developmentally disabled children.
The Joshua Alert bill, named after a young boy with autism who was found dead in 2024, easily passed the Ohio Statehouse this year. […]
• From The Minnesota Star-Tribune: “Trust in medical research has tanked. Gillette might have the answer.”
Gillette Children’s in St. Paul is trying to boost public confidence in medical research by doing something long considered taboo in U.S. health care: paying patients and their families to get involved.
The hospital for disabled children and adults is one of the first in the U.S. to hire “lived experience” partners who help researchers decide what to study when it comes to experimental treatments and how to evaluate their success or failure. The approach gained national attention this month when it was featured in Pediatrics, an influential scientific journal, as an example for others to follow.
[…]“The bias of academic research is, ‘What is going to get me funded? What is going to get me tenure?’ Not, ‘What is going to improve the health and quality-of-life outcomes of the person living with this condition?’” [said Rhonda Cady, leader of Gillette’s health services research.]
Program leaders said embracing the insights of patients and families could help restore public trust in research that declined following the COVID-19 pandemic and disagreements over everything from vaccines to masks to stay-at-home orders.[…]
• From GoErie.com (Pennsylvania): “Pa. has high special education needs. What federal shift could mean”
Special education oversight is shifting out of the U.S. Department of Education, federal officials have announced, a move that many disability advocates decried as potentially fragmenting critical programs.
The change could have particular effects in Pennsylvania, which has one of the nation’s highest shares of students with disabilities.[…]
• From The Guardian: “‘Above all, there is love’: single mothers caring for disabled children – in pictures”
“Defying the Myth” is a deeply personal project that has evolved over more than a decade. Award-winning London based photographer Carol Allen-Storey chronicles the untold stories of single mothers who create safe and enduring worlds for their progeny living with severe disabilities. In this image we see Annalisa and Maria share an intimate moment at home. Defying the Myth by Carol Allen-Storey will be published in July 2026 by GOST.
Guardian head of photography Fiona Shields[…] says: ‘When Carol invited me to write a foreword for the book, I thought I would be commenting on the quality and purpose of her photography project, shedding light on disadvantaged families living with a child with disabilities and all the harsh and bleak aspects of that daily struggle. That is all true, but the real surprise comes from the power of the work as a collaboration, the creativity that a shared mission has unlocked for everyone. There is poetry, art, photography and above all there is love’[…]
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