How Disabled Americans Are Pushing to Overhaul a Key Benefits Program

When Congress created Supplemental Security Income in 1972, it left no question about its intentions. The program, lawmakers wrote, was “designed 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.”

Today, it helps ensure the opposite.

The maximum annual benefit is $9,528, three-quarters of the federal poverty level. Payments decrease if recipients have more than $85 a month in outside income, and are revoked if they exceed $2,000 in savings. There are penalties for accepting groceries or even shelter from loved ones. The result is that it is structurally difficult to be on S.S.I. and not live in poverty.

The shift happened over nearly five decades in which Congress made no major changes to the program, which is run by the Social Security Administration and serves about eight million Americans. The outside income limits, for instance, have never been updated for inflation.

Now, as Democrats hash out the details of trillions of dollars in spending that they hope to pass through budget reconciliation with no need for Republican support, S.S.I. recipients and advocates see a rare opportunity to overhaul the program.

It is far from a guarantee. Just this Wednesday, Senator Kyrsten Sinema, Democrat of Arizona, said she would not support the full $3.5 trillion package that top members of her party have proposed — and because her support, and that of Senator Joe Manchin III, Democrat of West Virginia, is essential, what is cut from the package and what stays in will depend on what the two of them are willing to accept. Whether the S.S.I. proposal is ultimately included in the bill may depend partly on its cost; the Congressional Budget Office has not released an estimate.

But “there is a shot,” Representative Jamaal Bowman, Democrat of New York, said in a virtual forum with advocates last week, calling the current state of the S.S.I. program “a national scandal” and urging supporters to call the White House and congressional leaders “every single day.”

Mr. Bowman is a sponsor of the Supplemental Security Income Restoration Act, which advocates want included in the reconciliation bill. Among other things, it would increase S.S.I. payments to the federal poverty level and index them to inflation; allow more than $500 per month in outside income with no penalty; raise the asset limit to $10,000; and remove penalties for “in-kind support,” like a friend offering shelter.

In one sense, the bill is just another example of a measure that stopped being a nonstarter when Democrats took control. But it is also a culmination of years of work by people with disabilities, who have sought to establish themselves as a voting bloc capable of influencing elections and making demands of elected officials.

The inclusion of the S.S.I. measure in the budget reconciliation bill is by no means a sure thing. There have, however, been tangible signs of momentum.

Last month, advocacy groups helped organize what they said was the first bicameral briefing on S.S.I. — essentially a presentation to congressional staff members — in more than 30 years. Senator Bernie Sanders of Vermont included an S.S.I. overhaul on a draft list of Democratic priorities. Mr. Bowman said that he had spoken with White House officials and that “all signs point to the president being supportive.”

The White House did not respond to a request for comment, but President Biden endorsed changes to S.S.I. during his election campaign, a move without which “I don’t think what we’ve seen on the Hill would have been possible,” said Matthew Cortland, a senior fellow at Data for Progress and leader of a campaign called #DemolishDisabledPoverty, of which the S.S.I. push is one part.

Other factors may be the pandemic’s outsize impact on disabled and aging Americans and a growing collaboration between advocates for those groups.

Rebecca Vallas, a senior fellow at the Century Foundation and a leader of #DemolishDisabledPoverty, called the current push “the logical next step of what we saw in 2017 and 2018, when the disability community and the senior community came together to fight in lock step to protect the Affordable Care Act and Medicaid.”

A Century Foundation/Data for Progress poll in May found bipartisan support for increasing S.S.I. payments to the poverty level (91 percent support among Democrats, 70 percent among Republicans, with a margin of error of plus or minus three percentage points).

Beyond organizers like Ms. Vallas and Mr. Cortland, himself a former S.S.I. recipient, many current beneficiaries have begun speaking about how the program’s restrictions affect them.

Felix Guzman, an S.S.I. recipient with autism and schizoaffective disorder, said higher payments could cover speech therapy or communication devices for his 7-year-old son, who is autistic and nonverbal.

“The difference between waiting a month to two months for an item that might help him communicate can make the difference between him meeting a milestone for his disability or not,” Mr. Guzman, 39, said.

Other recipients say they can’t pursue meaningful work because it could cost them their S.S.I. and accompanying Medicaid coverage without providing enough income or insurance to compensate. Some want to test their ability to hold a job, but don’t want to risk having nothing to fall back on if they can’t.

“It can be very hard to get your S.S.I. or your Medicaid back once you do lose those benefits,” said Mia Ives-Rublee, the director of the Disability Justice Initiative at the Center for American Progress, who uses a wheelchair and relied on S.S.I. in college. “There’s a real trap of having to balance your health needs versus your willingness and ability to work.”

The program also discourages marriage for many recipients, because a spouse’s assets — even a few thousand dollars in a retirement account — would count toward the asset limit ($2,000 for individuals and $3,000 for couples).

“The amount of benefits that we lose is thousands — it’s not anything that a normal spouse can afford,” said a disabled S.S.I. recipient who spoke on the condition of anonymity because she fears retaliation for speaking against the rules of the program she relies on. “Most of us, myself included, are not getting married because I literally would die. I would lose everything.”

Once, that recipient said, she was too sick to leave her home for two months, and because her daily expenses fell, her bank account balance increased to $2,135 from just under $2,000 without her noticing. When the Social Security Administration found out, she had to repay her entire S.S.I. benefit for those months, which took two years.

Organizers of #DemolishDisabledPoverty also want Congress to increase funding for home- and community-based services; eliminate a law that lets companies pay some disabled employees far less than minimum wage; and update Social Security Disability Insurance, or S.S.D.I, which is distinct from S.S.I. but has many similar limitations.

Melanie Waldman, 30, who has lupus, Ehlers-Danlos syndrome and an amputated arm, has been unemployed since leaving a job that was, she said, “wrecking my body.” She receives about $800 a month from S.S.D.I.

She has a background in theater and said she wanted to pursue roles, but would have to ask for lower pay. She is allowed $10,000 per year in outside income and, before she was on S.S.D.I., earned about $13,000 from acting. Even though S.S.D.I. pays less, she can’t afford to lose it because that would mean losing health care.

Mr. Cortland said the current legislative push focused on S.S.I. because it can be changed through budget reconciliation, whereas S.S.D.I., by law, cannot. But he emphasized at the virtual forum last week that advocates would also work to improve S.S.D.I.

The forum, organized by the Century Foundation, included Mr. Bowman and Representative Ayanna Pressley, Democrat of Massachusetts, both of whom urged the roughly 17,000 people watching to pressure Congress and the White House.