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disability rights
Medicaid Cuts Put Services for Vulnerable People at Grave Risk
Medicaid doesn’t just provide healthcare. It is the single largest payer for the community-based services people with intellectual and developmental disabilities need to live, work, and thrive in our communities.
May 22, 2025
With the House passing their budget reconciliation bill with a vote of 215-214, hundreds of billions in proposed cuts to Medicaid have moved one step closer toward very real, harmful consequences, including for people with intellectual and developmental disabilities, or I/DD, whose health, safety, and quality of life depend on Medicaid.
Medicaid doesn’t just provide healthcare. It is the single largest payer for the community-based services people with I/DD need to live, work, and thrive in our communities—services that range from assistance with intimate activities of daily living and personal hygiene, to employment supports to find and maintain a job, to providing residential and in-home supports to support independent living.
If lawmakers approve the proposed cuts to Medicaid, state budgets will be unable to absorb the financial shock. Even if targeted to other groups like those made eligible for services through Medicaid expansion, programs that enable people with I/DD to meaningfully participate and thrive in our society will be the first to go. We know because home- and community-based services for people with I/DD are optional services, meaning they are some of the last services to be funded when there’s a state funding shortfall. We saw this following the Great Recession when, following cuts to federal funding, every single state made cuts to services and 36 states specifically made cuts to services for people with I/DD.
If lawmakers truly care about boosting economies, they would invest in, not divest from Medicaid, because these services actually play a critical yet often invisible role in state economies.
Divesting from Medicaid will be devastating to providers of I/DD services who are already struggling immensely due to insufficient Medicaid reimbursement rates that haven’t kept pace with inflation. As a direct result, 90% of community providers report moderate to severe staffing shortages as workers seek out higher-paying jobs in entry-level retail, convenience, and fast food industries. Without sufficient staffing, 69% of community providers report they’re unable to take new referrals for people with I/DD who need and qualify for services.
Medicaid cuts by another name in the form of increased red tape eligibility requirements or work reporting requirements also threaten people with disabilities, who may lose coverage due to barriers completing onerous reporting requirements, even if they are provided an exemption. Such requirements also threaten to further exacerbate the direct support workforce crisis, as 49% of direct care workers rely on public assistance programs themselves, and approximately one-third work part-time or with inconsistent schedules—two job features that are generally incompatible with work reporting requirements. If direct support professionals, the very backbone of disability services, are unable to meet burdensome reporting requirements, it will only force them to find more stable, higher-paying jobs outside of care work.
If lawmakers truly care about boosting economies, they would invest in, not divest from Medicaid, because these services actually play a critical yet often invisible role in state economies.
New York State’s $6.7 billion investment in home- and community-based services generated $14.3 billion in economic activity, while Maine is estimated to have lost out on over $1 billion due to its shortage of direct care workers. That’s because Medicaid-funded services create jobs, while enabling the family members and caregivers of people with I/DD to remain in the workforce too. Without services, families are also more likely to need public assistance.
The House’s budget proposal will force unthinkable decisions on states and providers. It will undoubtedly lead to people with I/DD losing access to services, potentially being forced to languish in their homes without the assistance they need for using the restroom, supportive hygiene, and preparing and eating meals. It will lead to people with I/DD losing their jobs without the employment supports they need to maintain their careers. And it could mean unnecessary institutionalization of people whose right to live and thrive in their communities was codified by the Americans with Disabilities Act and, later, the Supreme Court’s decision in Olmstead v. L.C.
Senators hold the opportunity to continue protecting our most vulnerable populations by rejecting any cuts to Medicaid and not putting further stress on a system already in crisis.
Update: This piece has been edited to reflect the fact that the U.S. House of Representatives passed their budget reconciliation bill on the morning of May 22, 2025.
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Disability Advocates, Civil Rights Groups Sound Alarm on RFK's Reported Autism 'Registry'
Advocates still have concerns about Trump administration officials' efforts to study autism, even after the Health and Human Services Department said there will be no autism registry.
May 13, 2025
Dozens of public health, disability rights, and civil rights groups on Monday raised "significant concerns" about a walked-back proposal from the National Institutes of Health—an entity within the U.S. Department of Health and Human Services—to create a national autism registry.
Their concern stems from April comments first reported by CBS News from NIH Director Jay Bhattacharya, who said during a meeting that NIH intends to create national disease registries, including one for autism. However, HHS later said it is not creating a national registry for people with autism, walking back Bhattacharya's comments.
However, NIH is moving forward with creating a "real-world data platform," which Bhattacharya also discussed during that meeting. The platform will partner with federal health insurance programs and use information from Medicare and Medicaid in order to determine the "root causes" of autism, according to Health and Human Services Secretary Robert F. Kennedy, Jr.
Kennedy has drawn pushback for his comments about autism in the past, including when he recently cast autism as a "tragedy" and an epidemic that "destroys families."
In a Monday letter addressed to Kennedy, the groups argue that even though HHS has said it is not creating such a registry, "the larger platform's unclear purpose and potential for abuse necessitates that HHS and NIH engage with disability and civil rights advocates and implement fundamental safeguards."
According to New York Timesreporting on the database, it "is not clear precisely what kind of research will be conducted."
David Mandell, a professor of psychiatry and longtime autism researcher at the University of Pennsylvania, told the Times it's "the registry without the word 'registry' in it."
"We are creating a tool, and tools can be used for good and for evil," he also said. "I know a lot of researchers—and I like to think of myself as one—who have used this kind of tool for good. And I'm really concerned that that's not what happens."
According to the letter, lack of clarity around what NIH specifically plans to do has led to "immense concern" among autistic people, their families, researchers, and privacy advocates.
"HHS and NIH's failure to engage with autistic people and autistic advocates has exacerbated this lack of clarity," the letter alleges.
Letter signatories include the American Civil Liberties Union, the Autistic Self Advocacy Network (ASAN), and the Autism Society of America.
The groups outline three steps they say NIH and HHS can take to help establish trust around its proposed platform: "Meaningful communication with autistic people and advocates; fundamental privacy safeguards to prevent misuse and abuse; and ensuring the data platform advances the well-being of autistic people, people with disabilities, and the public health while minimizing potential harms."
The groups wrote that some data collection can enable better understanding of how to meet the needs of people with disabilities, but "disabled people in the United States have a long and troubled history with governmental efforts to find and track disability for the purpose of eliminating it."
"It's no secret that this proposal has created a lot of fear and confusion in the autistic community," said Colin Killick, executive director of ASAN, in a statement on Monday. "We continue to advocate and support research into autism that autistic people want conducted, but it is critical that autistic people's private data not be shared without our consent. We hope the administration answers our questions to shine light on how autistic people and our rights will be protected."
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This 1 Neat Trick Can Dramatically Reduce Homelessness
Supplemental Security Income checks should be increased to meet recipients’ needs.
Apr 12, 2025
Sarah’s situation was one we see a lot in eviction court. Hers was among the 3 of every 4 households whose incomes are low enough to qualify for a federal housing subsidy but do not receive it because we underfund the programs so dramatically. So Sarah had been living for a few years in a dilapidated house where her absentee landlord charged her well below market-rate rent—just $650 a month. The implicit bargain was that Sarah would not complain to the health department or anyone else about the caved-in ceilings, mold, broken appliances, and mice that came in through the many holes in the house’s rotting exterior.
That unholy arrangement unraveled when Sarah’s landlord sold the property to a buyer who discovered Sarah had no written lease and wanted to demolish the house. We met Sarah (not her real name) in court after she had ignored multiple notices to move.
“I know the judge is going to order me out of there,” she told us. But she had looked around at available rental units and couldn’t find anything for less than $900 a month. Which was a problem, because Sarah’s entire monthly income was only a few dollars more than that. “How am I supposed to live now?” she asked.
It's a good question.
A significant portion of our nation’s unhoused population are SSI recipients, limited to an income that doesn’t come close to covering the costs of housing, food, transportation, clothing, and other necessities.
Like 7.5 million other people in the United States, Sarah is a recipient of Supplemental Security Income, known as SSI. SSI is a federal program for persons who have little to no income or assets and are living with severe disabilities that leave them unable to work. Sarah, 67 years old, is legally blind, uses a wheelchair, and has multiple other chronic, debilitating conditions. That allows her to qualify for SSI.
But, to her point, it doesn’t allow her to live.
Sarah’s monthly SSI check is the maximum program amount of $967. Couples who are both eligible for SSI are maxed out at $1,450 per month. SSI recipients have to comply with tight restrictions on how much income they can make or assets they can own. Most are like Sarah, fully unable to work and with no other income. So they are condemned to poverty.
As Sarah was on the cusp of learning, SSI often condemns people to homelessness, too. A significant portion of our nation’s unhoused population are SSI recipients, limited to an income that doesn’t come close to covering the costs of housing, food, transportation, clothing, and other necessities.
“I’ve had many clients who received a monthly SSI check but still can’t afford the rent,” says Jesse Rabinowitz of the National Homeless Law Center. “When there is no housing, people have no choice but to sleep outside.” That grim reality of sleeping outside brings with it a significant chance of death from exposure, assault, and untreated health crises.
Mountains of evidence point to the main cause of homelessness being the problem faced by Rabinowitz’s clients and ours: a straightforward inability to pay monthly rent.
“I want to be absolutely clear that the reason people become unhoused is that they do not have access to housing that they can afford,” says Brian Goldstone, anthropologist and author of the new book, There is No Place for Us: Working and Homeless in America. “The answer isn’t addiction or mental illness; it’s that they didn’t have access to housing they could afford.”
SSI: Hard to Get, Hard to Live on Once You Get It
As Sarah was learning, life on an SSI check means there is essentially no safe housing that she can afford. It wasn’t supposed to be this way. When Congress created the SSI program in 1972, the stated purpose was to “provide a positive assurance that the Nation’s aged, blind, and disabled people would no longer have to subsist on below poverty level incomes.” But the current SSI maximum benefit is well below the federal poverty line. The official poverty level itself is an underestimate of the costs incurred by people like Sarah who pay a “disability tax” of higher medical, transportation, and housing costs. That math is not mathing in particular for the women and persons of color who make up a disproportionate number of SSI recipients.
Because SSI in theory could ensure that all who cannot earn significant wages would receive a monthly stipend, it is sometimes compared to a universal basic income. But no one who has ever applied for SSI confuses the two. The program’s onerous financial and disability eligibility requirements make damn sure that there is nothing “universal” about SSI income. Less than half of all SSI applications are granted—less than a third of them at the initial application stage.
My and other service providers’ experience is that these systematic refusals occur despite the fact that the majority of SSI applicants we see are clearly eligible for the program. But the same disabilities and poverty-caused barriers that lead them to need SSI contribute to them getting snared in the red tape of the application process.
Just as we know that housing is the best response to homelessness, countless research studies confirm that increased income is a silver-bullet remedy for poverty.
Those who do successfully get enrolled in SSI face restrictive rules that all but guarantee they remain destitute. They are not allowed to receive more than $20 in cash or in-kind assistance from family or others. If a couple with disabilities marry, their combined monthly benefits are cut. Caps on savings leave SSI recipients unable to respond to life’s unexpected expenses like an uncovered medical cost or car repair. Ironically, this paternalism comes at a significant cost to taxpayers. SSI benefits are only 4% of the Social Security Administration’s outlay, but policing the program’s many recipient restrictions means SSI takes up 38% of the agency’s administrative costs.
SSI’s low benefit levels and many restrictions have been heavily criticized by poverty research and advocacy groups like the Center on Budget and Policy Priorities, Center for American Progress, and Brookings Institution. The organization Justice in Aging has long pushed for SSI reform.
“We need to improve the program by raising benefit levels, reducing barriers to access, and making it easier for people to afford the daily costs of living,” says Tracey Groninger, Justice in Aging’s director of economic security.
Legislation proposed in the last Congress aimed to do just that. The Supplemental Security Income Restoration Act, sponsored by 36 House members and endorsed by over 100 organizations, would have raised the SSI monthly benefit amounts to the federal poverty level and ratcheted back the prohibitive asset and outside income restrictions. In this Congress, the newly-introduced Savings Penalty Elimination Act would allow SSI recipients to keep more savings while retaining their eligibility.
The benefits-increase bill did not succeed, and has not yet been reintroduced. Hopefully, that changes soon. Just as we know that housing is the best response to homelessness, countless research studies confirm that increased income is a silver-bullet remedy for poverty. Increasing SSI benefits to a level that covers basic needs would have a dramatic effect on Sarah’s life, the lives of millions of others, and all of our communities.
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