Trump’s Budget Would Limit Investigations Into Abuse, Neglect of Disabled People

On May 30, the Trump administration released its most comprehensive look yet at its proposed budget for the upcoming fiscal year. The proposal heightened concerns that the disability community and advocacy groups have voiced in recent months regarding the administration’s plan to eliminate the Administration for Community Living (ACL) and related grant programs.

If these programs are not funded, experts warn that an increasing number of disabled and aging Americans could be institutionalized with little oversight to ensure their rights are protected against abuse and neglect. The National Disability Rights Network (NDRN) called the plan to eliminate the programs “a direct and deliberate attack on people with disabilities, their families, and the systems that protect their rights, health, and independence.”

Alison Barkoff, who served as ACL’s acting administrator and assistant secretary for aging during the Biden administration, is now director of George Washington University’s health law and policy program. “The dismantling of ACL combined with the elimination of programs and these big Medicaid cuts are literally going to roll back decades of progress,” Barkoff told Truthout. “In terms of people with disabilities, the default [could become] people in institutions that are very unsafe with huge rights violations.”

A subsidiary of the Department of Health and Human Services (HHS), ACL houses and funds the state councils on developmental disabilities, university centers for excellence in developmental disabilities, and the nation’s network of protection and advocacy (P&A) agencies. It also provides grants to centers for independent living, administers employment programs for disabled people, and offers other services to help ensure disabled people and older adults can live and participate in their communities, a requirement of the 1990 Americans with Disabilities Act (ADA) and a 1999 Supreme Court decision in Olmstead v. L.C. That decision held that under the ADA, segregating persons with disabilities in institutions constitutes discrimination. One in five older adults and almost a quarter of the nation’s more than 70 million disabled people depend on ACL programs, according to Barkoff’s testimony before the Senate at a forum held in May.

Plans to shutter ACL and shift some of its programs to other HHS agencies were first announced on March 27 to comply with President Donald Trump’s earlier executive order on so-called “workforce optimization” and “eliminating waste [and] bloat.” HHS said that the “dramatic restructuring” would save the department $1.8 billion per year and shrink the department’s workforce by 10,000 employees, resulting in a total decrease from 82,000 full-time employees to only 62,000 when combined with other efforts to downsize — a reduction of almost 25 percent.

More details of the Trump administration’s plan to eliminate ACL became public when a draft budget proposal from the Office of Management and Budget, dated April 10, was leaked. The new budget documents published on May 30 now confirm that the administration wants to eliminate ACL and much of its work as part of a $163 billion cut in federal spending. While the proposed budget slashes vital services for disabled and aging Americans, it promises over $1 trillion for military spending and anti-immigrant and border infrastructure.

These moves are also part of HHS Secretary Robert F. Kennedy Jr.’s agenda to “Make America Healthy Again,” which Kennedy claims is focused on fighting chronic illness and reducing federal spending. However, funding for chronic disease treatment and research has also been slashed in the Trump administration’s May 30 budget proposal. Experts also warn that rolling back programs like those provided by ACL could result in increased spending, as it is more expensive to house people in institutions than to provide services that allow them to live in community.

While these efforts do not seem to align with the administration’s stated goals, ramping up institutionalization, particularly for individuals with intellectual and developmental disabilities, does align with the administration’s dangerous and dehumanizing rhetoric about disabled people and Trump’s long-held obsession with eugenics. Dom Kelly, founder, president and CEO of New Disabled South, a nonprofit disability advocacy organization in the U.S. South, told Truthout, “It’s ableism at its core.”

Already, many ACL programs are struggling to operate because HHS has delayed distributing funding authorized by Congress in March and has fired about half of ACL’s staff, including those responsible for budget and grants, making it almost impossible for the remaining staff to fund and implement programs.

One of the most alarming aspects of the proposed defunding of ACL is its effect on P&As. There are 57 P&As — one in every state, every territory, and Washington, D.C. — and most receive almost all of their funding from the federal budget. If that funding is cut, the organizations will not be able to carry out their federally mandated functions to provide legal and advocacy services to disabled people and monitor and investigate abuse and neglect in institutions and group facilities housing disabled and older individuals, such as hospitals, prisons, jails, group homes, and nursing homes.

Importantly, under federal law, P&As are the only organizations with the authority to access all areas of facilities housing people with disabilities that would otherwise be accessible only to residents and to have unaccompanied access to residents themselves to communicate with them privately. This allows the organizations to expose and address abuse and neglect, even if an individual has not sought out the agency.

“The critical role of the P&As is that they go into so many of these facilities and investigate and reveal so much of the abuse and neglect that happens in these places,” Kelly told Truthout. “They’re one of our only layers of oversight that allows for some of these injustices to be uncovered and fought.”

P&As were created in 1978 under the Developmental Disabilities Assistance and Bill of Rights Act, which was signed into law three years prior. The legislation came on the heels of a historic civil rights lawsuit challenging living conditions at Willowbrook State School in New York, a state-funded institution where adults and children with intellectual and developmental disabilities were beaten, experimented on, and deprived of fundamental rights to food, appropriate medication and access to hygiene facilities.

While there has been a hard-fought shift toward community living since Willowbrook, tens of thousands of disabled people and older adults remain in institutions nationwide. This includes more than 16,000 people with intellectual or developmental disabilities housed in state-operated institutions and over 1.2 million people in nursing homes. While nursing homes are often thought of as places for aging adults, more than 200,000 nursing home residents are disabled individuals under the age of 65.

Nationwide, almost 700,000 people are on waiting lists to access home- and community-based services (HCBS) waivers that would allow some to transition out of institutional settings. Between 2016 and 2023, people sat on waiting lists for an average of 36 months before receiving waivers through the Medicaid program, which provides services for disabled adults and children in their own homes. Since 1999, dozens of lawsuits have also been filed against state and local governments alleging continued segregation and institutionalization of disabled people in violation of the ADA and the Supreme Court’s decision in Olmstead v. L.C.

Legal protections for disabled people have also been strengthened since Willowbrook, but research suggests that cases of abuse and neglect persist in institutional settings. In 2022, the last year for which complete data is available, the National Adult Maltreatment Reporting System investigated over 120,000 reports of alleged maltreatment of older or disabled adults living in residential care facilities. Cases of maltreatment included the use of force or violence, deprivation of necessities, sexual abuse, financial exploitation and emotional abuse, such as verbal insults or humiliation.

Matthew Borus, a professor at Binghamton University who studies disability and nursing homes, told Truthout that dehumanizing treatment is commonplace in some facilities. Nursing home residents that Borus interviewed for his research have reported being shoved by staff, committed to a psychiatric facility as a form of punishment, and having their call button put out of reach to prevent them from calling for assistance. “A lot of the folks I’ve talked to have talked about how they feel like the management of the nursing home treats them essentially as bodies in beds, rather than as people participating in a community,” he told Truthout.

“People think about [Willowbrook] and think, ‘Oh, we’ve moved beyond that. We don’t have these kinds of institutions.’ But actually, there are still state-run institutions, and while it may not be the kind of horrific circumstances that people used to live in at Willowbrook, it is, in today’s environment, still tantamount to abuse and neglect,” Kelly told Truthout. Fulfilling the promise of the Supreme Court’s landmark ruling in Olmstead v. L.C. would require reinforcing ACL and funding more HCBS waivers to get people off waiting lists and out of institutions.

Instead, Barkoff warns that a return to Willowbrook-like conditions could be on the horizon if Congress moves to approve Trump’s proposed budget and eliminate ACL and its network of P&As. “We will not only have a lot of people who might die, [but also] people certainly experiencing things like restraints and seclusion, having their rights violated,” she told Truthout. “We’ve worked really hard to put systems and supports in place to help people live the lives that they want in the community [and] if these programs were eliminated, I do fear that we will be going backwards to a time where people with disabilities will be primarily in congregate settings [and] not be able to be part of their own communities and will face huge risks of abuse and neglect.”

This story was originally published by Truthout.