John Loeppky argues that seeing disability as a culture fosters connection and encourages more support for disabled people.
The Trump administration is trying to slash access to lawyers who defend the rights of Americans with disabilities, advocates say.
Most of the lawyers work either for the Department of Justice or for disability rights agencies that Congress set up in every state decades ago. Many of the Justice Department lawyers quit in 2025 after being reassigned to other duties, their supporters say. And Trump budget officials proposed deep cuts to federal grants supporting the state-based legal groups.
People with disabilities have the right to live in their communities if possible. Federal laws and court decisions say they may attend school, work jobs, and go to restaurants, movie theaters, and other public places. If they can find lawyers, they can file legal challenges when those rights are denied.
The federally funded attorneys quietly work to ensure the U.S. lives up to promises made by the Americans with Disabilities Act and other laws, said Alison Barkoff, a health law professor at George Washington University.
"I think many families of people with disabilities, or even many people with disabilities themselves, don't hear about it until they Google, 'Where can I get help?'" said Barkoff, who helped lead such efforts under Presidents Joe Biden and Barack Obama.
The attorneys' goals include ensuring that people with disabilities have the services they need to live in their own homes, instead of having to move into nursing homes or other types of institutions, Barkoff said.
"These are people who, if these supports are ripped away, are going to have to leave their communities and their families, at a higher cost for taxpayers," she said.
The state-based disability rights groups are known as "protection and advocacy" organizations. Most of them are nonprofit groups.
Congress approved the federally financed system in the 1970s after TV journalist Geraldo Rivera exposed abuses in a New York institution for people with mental and intellectual disabilities, revelations that ignited a national outcry. President Donald Trump proposed cutting the system's federal funding from $148 million to $69 million for fiscal year 2026, according to the National Disability Rights Network, which represents the state-based groups.
Appropriations committees in the U.S. House and Senate have recommended Congress maintain funding at the previous level. But advocates for the agencies worry that even if Congress maintains current support, the administration will try again to slash their support in future years.
"It definitely would put people in our communities in harm's way," said Marlene Sallo, the national network's executive director.
White House officials declined to comment on why the Trump administration proposed the deep cuts.
Isaac Schreier's family can attest to the value of the state-based legal groups.
Isaac, 7, lives in Ankeny, Iowa. He has a rare condition called osteogenesis imperfecta, also known as brittle bone disease. The condition has caused about 60 bone fractures, including in his limbs, spine, and skull. It can cause intense pain and leave him unable to walk.
At times, Isaac's disability is practically invisible, said his father, Jake Schreier. Unless he has recently suffered a broken leg bone, he walks well. "But he tires much more quickly than you or I would."
Isaac's doctor said he needed a special wheelchair that could be adjusted to put him in different positions depending on which bones were broken. But the private insurer that manages his Medicaid coverage declined to pay for the $3,500 wheelchair.
“They required proof that it was a permanent and long-standing condition,” Jake Schreier said. “We were very frustrated.”
Schreier appealed the denial but lost. A nurse at a specialty clinic then recommended he reach out to Disability Rights Iowa, a federally funded protection and advocacy group that had helped other families in similar straits.
The group linked Schreier with two of its attorneys, who filed a new appeal. The lawyers wrote a detailed letter explaining why Isaac was legally entitled to the new wheelchair, and they cited specific Iowa codes and court precedents.
The insurer wound up paying for Isaac’s special wheelchair.
The chair allows Isaac to participate in school and community activities even when he has broken bones. “It’s absolutely night and day. I can’t imagine a world where we didn’t have it,” his father said.
Isaac may again need people like the disability rights lawyers to fight for him, so he won't be shunted away from society, Schreier said. “We’re really trying to keep as many doors open as possible for him.”
The threat to the state-based groups' funding comes as the Trump administration seeks to force more people with mental illness or addictions into institutions.
David Hutt, deputy executive director for legal services at the National Disability Rights Network, noted that the groups have legal authority to go into facilities where people with disabilities live, to check conditions and treatment. Those facilities include state institutions and privately owned nursing homes.
More Americans could wind up living in such settings if Trump succeeds in his quest to institutionalize people with mental illness who are living on the streets, Hutt said.
At the same time, states are facing cuts in federal contributions to Medicaid, the public health coverage program for people with low incomes or disabilities. In response, they may be tempted to reduce Medicaid coverage of community care programs, many of which are considered optional under federal law, Hutt said. If that happens, “you’re going to get increased institutionalization, which actually costs more,” he said.
Disability rights organizations often have stepped in when states failed to provide care and services that people with disabilities are entitled to. So have lawyers from the U.S. Department of Justice's civil rights division.
For example, Disability Rights Iowa filed a lawsuit in 2023 alleging the state failed to provide proper mental health resources for children on the Medicaid program. The state agreed to a settlement that advocates said could bring "radical change" to the system.
In 2021, the Justice Department warned Iowa officials that their lack of support for community services meant too many people with intellectual disabilities had to live in facilities. State officials vowed to do better.
Since Trump returned to office, many of the Justice Department's most experienced disability rights lawyers have taken buyouts or been reassigned to other areas, said Jennifer Mathis, a former top administrator at the Justice Department under Biden.
"There's really skeleton staffing at this point," said Mathis, now deputy director of the Bazelon Center, which advocates for rights of people with mental disabilities.
The overall civil rights division is down to about 300 people, fewer than half the number it had under Biden, Mathis said.
The civil rights division's new director, Harmeet Dhillon, told conservative commentator Glenn Beck in April that more than 100 attorneys had left the division, but that they didn't support Trump's priorities. "The job here is to enforce the federal civil rights laws, not woke ideology," she told Beck.
In a statement to KFF Health News, Dhillon said the division continues to be "a vocal and active advocate for Americans with disabilities."
Dhillon noted the department recently sued Uber over complaints that the ride-hailing service was turning away customers with service dogs or wheelchairs; has secured agreements with Arkansas and North Carolina to improve treatment of imprisoned people with disabilities; and is investigating large bus companies over allegations of failing to provide proper accommodations for people with disabilities.
The department declined to comment on the record about the number of attorneys it has working on disability rights issues. However, it is publicly recruiting "civil rights warriors," including lawyers, to join the civil rights division.
Jake Schreier, the Iowa parent, hopes the issue will be worked out nationally.
"I really can't believe this is anything that would be partisan," he said.