Just one look at Shy’tyra Burton’s life reveals her need for federal government assistance that helps disabled Americans stay in their homes. Born two months premature to a poor Philadelphia family, unable to breathe or swallow without a tube and largely confined to medical facilities until age 4, Burton was diagnosed with a litany of developmental and intellectual disabilities that left her with an IQ below 70.
She persevered and graduated from a high school special education program, then tried to get into a community college. But she had difficulty understanding basic tasks and information. She couldn’t get hired, including at McDonald’s. After multiple medical and psychological evaluations and a hearing before a judge, the federal government approved her for Supplemental Security Income Programwhich provides a basic income to severely disabled people and destitute elderly people.
For Burton, now 22, the $994 monthly benefit saves her life, but it is not enough to support herself. So, like many SSI recipients, she continued to live with her father, who earns about $2,000 a month as a sanitation worker in Philadelphia.
Now, President Donald Trump’s administration is poised to penalize people like Burton simply because they live in the same home as their family, according to four federal officials, internal emails and a report. federal regulatory list. The administration is working on a rule change that would deduct the value of a disabled adult’s room from their SSI benefit, even if the family members they live with are poor enough to qualify for food stamps. That would mean cutting benefits for some of the poorest SSI recipients by up to a third — about $330 a month in Burton’s case — or ending their assistance.
The effort to reduce SSI for families who also rely on food stamps, also known as the Supplemental Nutrition Assistance Program, or SNAP, was launched last year by top officials at the White House and the Department of Government Efficiency, several Social Security officials said. This is a second attempt by the Trump administration to quietly but significantly cut disability benefit programs overseen by the Social Security Administration, despite those programs’ strict eligibility standards and minimal cases of fraud. White House Budget Director Russell Vought and Social Security Commissioner Frank Bisignano abandoned a different settlement proposal involving disability benefits last year after ProPublica and other media outlets reported on the damage the plan would do to hundreds of thousands of largely blue-collar workers in red states. (Disability programs are administered by the Social Security Administration but separate from the retirement program for which the agency is named. The Trump administration has promised not to cut Social Security retirement payments.)
The likely reduction in SSI will affect not only young adults with disabilities such as Down syndrome and severe autism, who still live with their low-income parents, but also older adults with health or financial problems who have had to move in with their adult children on tight budgets. In total, up to 400,000 poor, disabled and indigent elderly people across the United States could see their support reduced or eliminated, according to a ProPublica analysis of actuarial figures for Social Security.
Protecting the SSI program from such a fate depends “on how the faithful will be judged and our attention to the most vulnerable,” said Galen Carey, vice president of government relations for the National Association of Evangelicals and himself the father of a 35-year-old son with Down syndrome who lives at home and receives SSI. Carey said it is wrong to reduce a disabled person’s SSI benefits because they choose or have to live with loved ones. “Knowing that they are contributing and not being a burden on the family can be a great source of pride,” he said. (About 40 Down syndrome organizations recently sent a letter to Bisignano expressing opposition to the planned change.)
Why this will particularly affect SNAP families is complicated. Essentially, under a longstanding federal policy that was updated under the Biden administration, if a household has already demonstrated poverty through SNAP or the expanded income reporting requirements of other public assistance programs, then the family is officially considered unable to financially support a disabled loved one living at home. (The typical SNAP household that also supports someone receiving SSI has a total annual income of just $17,000, according to the nonpartisan Center on Budget and Policy Priorities.)
The Trump rule will overturn this approach. It doesn’t matter if the SNAP program has already determined that a family is poor enough to receive assistance; anyone living in the house beyond the age of 18 without paying the full rent will be treated as if they had a benefactor. The value of their room and any family income and assets will be calculated and recalculated as often as each month and deducted from their SSI check.
The SSI rule change is under review by the White House Office of Management and Budget, a process that involves modifying the proposed regulations and determining where it falls on the president’s priority list. Once returned to the Social Security Administration for initial publication, the public will have an opportunity to comment; it could take until next year to be finalized, depending on how much opposition it faces.
When presented with a detailed list of the article’s findings, Rachel Cauley, OMB communications director, asserted that “this story is false because it speculates on policies that have not yet been decided.” When asked to clarify what was false, Cauley didn’t identify anything, instead reiterating that the story was “garbage.” A spokesperson for the Social Security Administration said that “Commissioner Bisignano remains committed to protecting and strengthening Social Security and serving America’s most vulnerable populations.” »
ProPublica interviewed families who rely on the SSI program in Philadelphia and across the country. We spoke to a young couple struggling to support not only their children, but also a parent with Alzheimer’s. We heard from a mother, Opal Foster, whose 18-year-old son has Down syndrome and lives at home while he strives to become a leader. And we spoke with a middle-aged woman with schizophrenia and panic disorder who lives with her brother’s family because she can’t hold down a job and is afraid of ending up alone in a nursing home.
All of these people could see their SSI benefits reduced because they live with family, even though disability advocates, evangelicals and budget experts agree that it is more humane and less costly for adults with disabilities to live at home rather than in institutional settings. Burton’s potential reduction in SSI benefits, for example, would save taxpayers about $11 per day. But if her father, because of reduced child support, can no longer afford to support her, it could cost taxpayers several hundred dollars a day or more to house her in a residential facility, according to the Pennsylvania State Fee Schedules.
Supplemental Security Income, which benefits 7.5 million Americans unable to earn a living because of severe disabilities or the poverty of old age, has never been easy to obtain. Less than a third of applications are approved and the process often takes years. Recipients of these benefits in turn have their finances regularly reassessed, and are also examined intermittently by medical and professional experts, to determine whether their payments will continue.
This paperwork and review-heavy process generates significant overhead. The SSI program distributes only 5 percent of all Social Security Administration benefits, but represents nearly 35 percent of the agency’s administrative budget. Month after month, staff must look at microscopic changes in SSI recipients’ living conditions as well as family members’ income and assets.
Current and former Social Security officials have told ProPublica over the past year that the complexities and absurdities of the SSI program remain perhaps the agency’s biggest bureaucratic headache. As ProPublica reported last summerDOGE has done nothing to address this problem, mostly ignoring SSI despite its obvious inefficiencies. In fact, DOGE and the White House ousted around 7,000 Social Security employeesmany of whom worked on SSI reforms and backlogs.
The Biden administration had tried to do something about excessive SSI bureaucracy. Under current law, disabled people whose families have already been found to be poor by qualifying for certain other public assistance programs, such as veterans’ benefits or Temporary assistance for families in needyou don’t need to make the same recordings, over and over again, to receive SSI. In 2024, Biden added SNAP – which is more widely used today than when these SSI rules were created – to the list of these programs.
It’s ultimately an act of government efficiency, said Marianna LaCanfora, who for years served as deputy commissioner for retirement and disability policy in the Social Security Administration, including during Trump’s first term. Safety net programs like SSI don’t have to be so complicated and therefore expensive, LaCanfora and other agency members said. But this is often the case because of all the effort to verify that the poor are really poor.
Nonetheless, conservative think tanks have opposed the Biden SNAP policy, with some arguing that paying these low-income SSI recipients less could save the federal government $20 billion over the next decade. And the White House included the rule change among its agenda items for the SSA until 2025. This was part of a broader initiative by the administration and DOGE to undo everything the Biden administration had touched.
If passed, the change would require young, intellectually disabled people like Burton as well as the very elderly to file detailed monthly reports if they want to continue receiving their benefits, even at a reduced level. They will need to provide details about the property where they live: whether it is rented or owned, as well as the names of the people in the house and whether any of those people have new income or assets. They will also need to include documentation of all household bills and expenses, showing how much they personally contribute or do not contribute, as well as financial documents such as bank statements and payslips.
Burton will likely have to make an appointment and appear in person at a local Social Security office every time his father’s schedule or salary changes, even slightly; every time she and he change the way they split utility bills; and every time an adult sibling spends even a few nights at home and helps cover living expenses. If she doesn’t do so, she could later receive bills accusing her of being overpaid by Social Security.
For his part, Bisignano, the Social Security commissioner, wants to be seen as a leader who makes the agency more professional and efficient, according to interviews with agency staff and recordings of him speaking in private executive meetings. But the change in SSI rules, by all accounts, will increase the administrative burden not only on families like Burton’s, but also on staff who will have to constantly assess the living conditions and family incomes of her and millions of others.
Given the tension between the rule’s effect and the sense of efficiency that Bisignano says he wants to instill in Social Security, some agency insiders told ProPublica that he could still push the White House to abandon the plan.
Shy’tyra Burton’s monthly SSI support check is what allows her to She contributes to her household by paying her own phone and Internet bills and buying many of her own meals, according to her father, Rondell. “But I’m still barely making it,” he said. He is largely the single parent to Shy’tyra and her siblings, who also need support, although they are more self-sufficient. Groceries and gasoline have become even more expensive.
Burton is calmer and manages her disabilities better when she feels her family’s economic situation is relatively stable, her father said. When he blew out his shoulder last year trying to throw a heavy recycling bin onto a garbage truck, and had to undergo surgery and take time off work, the loss of income quickly showed in his behavior, he said. “It’s a trickle-down effect,” he explained. “My daughter absorbs financial stress into her body.”
On a recent 75-degree afternoon, sitting on the front porch of the townhouse where she lives with her father, Burton rubbed her hands vigorously, as if it were cold outside. When asked why, she claimed it reminded her of being a baby in the neonatal intensive care unit and touching her parents’ hands through the small opening of her incubator.
Burton still has childish ways. She grabs her stuffed animals when she’s nervous, which is often. She speaks out loud to imaginary friends, the same ones she spoke to when she was little. Part of what she loves about life at home is that she can be herself and that her family will always be there to take care of her. She doesn’t like the lack of freedom and the fact that she can’t really be “out there” like her adult siblings.
Burton wanted to get into the child development field, to help children with disabilities like his, but some of the concepts were a little too difficult. Today, she is passionate about cosmetology and plans to one day support herself as a hairstylist. She spends much of her time practicing on mannequin heads in her childhood bedroom.