Amanda DeSimone-Shabrack relies on a home healthcare aide to help her high-needs autistic 12-year-old son. Virginia’s Medicaid program covers the assistance, enabling her to work as both an education technology specialist and a professor, run errands, and keep Mason in the home.
That could change. In June, the Department of Justice issued a legal opinion saying federal disability rights laws don’t require states to provide services that allow people with disabilities to remain in their homes rather than institutions.
It’s a sharp reversal from 1999, when a landmark Supreme Court ruling held that unjustified institutionalization constituted discrimination under the Americans with Disabilities Act. Previous administrations have relied on that ruling to enforce civil rights for disabled people, but the Trump administration says that long-held interpretation is wrong.
Advocacy groups say legal protections for about 40 million adults and 5 million children who have disabilities could be undermined, and they worry that the new interpretation may herald a return to forced institutionalization.
The stage is also now set for a legal fight between advocates, states, and the federal government. Some states with ongoing lawsuits challenging disability rights requirements are already citing the DOJ opinion in hopes it will help them prevail.
In a case in Texas, for example, some Republican-led states are arguing that a rule instituting a 1973 civil rights law that led to community and home integration of people with disabilities is costly and infringes on states’ rights.
People like DeSimone-Shabrack are especially worried because, they say, the opinion follows a spate of White House and Republican-led initiatives that have already begun eroding hard-won protections for people with disabilities.
“I’m worried. Am I going to have to put him in an institution, and what’s that going to be like for him?” said DeSimone-Shabrack, whose personal home care help was recently reduced from 30 to 18 hours a week by the state. “As he gets older, am I going to be able to care for him without this support?”
The Department of Health and Human Services remains steadfast in enforcing federal civil rights laws, agency spokesperson Emily Hilliard said in an email.
“Our commitment to ensuring that individuals with disabilities are treated with dignity, afforded equal opportunity, and are able to meaningfully access community services remains unchanged,” she said.
But advocacy groups say the DOJ opinion could have sweeping repercussions. The opinion doesn’t change existing law, but advocates worry that HHS and the DOJ could begin rescinding guidance and regulations that mandate integration for people with disabilities.
They’re concerned that agencies will stop enforcing disability laws that ensure people aren’t unnecessarily institutionalized. HHS, for example, has historically investigated disability discrimination claims at hospitals and in states that get federal funding, enforcing compliance with home and community integration through voluntary agreements. Disability rights experts say those agreements could now be imperiled.
And some states facing financial pressures may roll back Medicaid services that enable people with disabilities to stay in their homes and communities — a trend that’s already happening following last year’s passage of the One Big Beautiful Bill Act, which cuts a projected $900 billion-plus from the safety net program over a decade.
Democrats are seizing on the opinion, which was released in a DOJ memo, to portray President Donald Trump and Republicans as a threat to people with disabilities. Sen. Tammy Duckworth (D-Ill.) and other Senate Democrats led the introduction of a resolution calling on the DOJ to rescind the opinion.
“The Trump Administration’s memo is an outrageous attack on the rights and independence of the disability community,” Duckworth said in a statement.
The DOJ didn’t return emails seeking comment.
According to the DOJ’s interpretation, regulations that give disabled people the right to demand certain services for daily living — bathing, mental health counseling, and financial budgeting help, for instance — and that require states to extend community-based services to mentally disabled individuals are unlawful, a view the agency acknowledged “is out of step with the common understanding of that decision within the federal courts.”
States may have legitimate reason to treat mentally disabled people in institutions, “including resource constraints, capacity limitations in community-based facilities, and safety concerns for both the patient and the community,” the memo reads.
The Supreme Court case, Olmstead v. L.C., has long shaped federal policy. And while it remains to be seen how courts will respond to the DOJ, some states seeking to curtail disability protections see the opinion as significant.
Consider the 2024 lawsuit in federal court in the Northern District of Texas by Republican-led states arguing that an HHS rule about the integration mandate is unlawful. The lawsuit began with broader claims and 17 state plaintiffs. Following significant advocacy from the disability community, only Texas, Alaska, and Florida remain.
Following the new DOJ interpretation, the states filed documentation to inform the court about the memo as a new and relevant development. Similar documentation citing the memo has been filed in disability rights cases in Florida and New Hampshire, according to The Arc of the United States, a disability advocacy group.
Advocates for people with disabilities say the speed at which plaintiffs are citing the opinion underscores how it may be used to justify the erosion of protections.
“The administration’s attempt to dismantle decades of progress in community integration is alarming and inconsistent with federal disability rights laws and Supreme Court precedent as well as the critical enforcement work of prior administrations,” said Shira Wakschlag, senior executive officer of legal advocacy and general counsel at The Arc.
Forced institutionalization led to human rights violations, segregation, and a eugenics movement in the late 19th and early 20th centuries that included involuntary sterilization.
Exposure of the abuses, legal battles, and an independent living movement caused a major shift toward integration. Fewer than 1% of people with intellectual or developmental disabilities lived in state-run facilities in 2021, down from almost 30% in 1967, according to data from the University of Minnesota’s Residential Information Systems Project, which maintains metrics on such long-term services and supports.
The Trump administration has already taken steps to reverse that trend, advocates say.
Trump signed an executive order last year that addresses homelessness by expanding involuntary treatment and institutionalization, reversing a “housing first” approach championed by the Biden administration.
Much of the special education program office is moving from the Department of Education to HHS, raising concerns among advocates that the administration is reverting to a view that disabilities are a medical issue to be fixed rather than differences that can be accommodated.
And cuts in federal funding for Medicaid, a federal-state insurance program for people with low incomes or disabilities, also portend fewer resources and services. States have responded by reducing some optional benefits such as home health aides and support. In addition, qualifying for an exemption from the program’s work requirements, which take effect Jan. 1 in most states, will pose significant hurdles for people with disabilities.
The June DOJ opinion, advocates say, could accelerate the shift and result in court rulings that chip away at disability rights.
“While it doesn’t overnight change the law, it’s very troubling and very dangerous,” said Zoe Brennan-Krohn, director of the Disability Rights Program at the American Civil Liberties Union. “It reflects a really deeply held disrespect for disabled people from this administration and a total lack of awareness of the lived experiences of people with disabilities who are living in their homes.”
Data shows there can be benefits to involuntary institutionalization. Relative to those voluntarily admitted, people with psychiatric illness who were involuntarily admitted “experienced greater improvements in symptoms and function,” according to a September 2024 review in Psychiatry, Psychology and Law, a peer-reviewed academic journal.
Deinstitutionalization has created new challenges. More hospitals have been forced to board people with psychiatric illness in emergency rooms because of a dearth of available beds. And moving people into home- and community-based living was supposed to be accompanied by an increase in outpatient care and treatment that never materialized, creating gaps in support.
But advocates for the disabled community say involuntary institutionalization strips people of their autonomy and poses a higher risk of neglect and abuse.
Jennifer Kucera, 57, of Cleveland, spent two years in a nursing home. She has spinal muscular atrophy, a genetic disease that kills motor neurons, leaving her able to move only part of her left arm and her head.
At the institution, she said, she felt bored and trapped and developed intense itching from scabies, which is caused by microscopic mites.
For more than a decade, however, she has lived in an apartment with the help of caregivers who come in the morning to get her dressed and ready and return to put her to bed. She works at a disability rights group, and her care is covered by Medicaid.
“The two years I lived in the nursing home, it was the most horrible time in my life,” said Kucera, who worries about the DOJ opinion on Olmstead. “My future is a shaking floor beneath me. With the stroke of a pen, they could get rid of everything I’ve built for myself.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
from KFF Health News https://ift.tt/D205meq
