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 SSI 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 8 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, SSI recipients and advocates see a rare opportunity to overhaul the program.

It is far from a guarantee. This Wednesday, Sen. Kyrsten Sinema, D-Arizona, said she would not support the full $3.5 trillion package that her party has proposed — and because her support and that of Sen. Joe Manchin III, D-West Virginia., are essential, what stays in the package will depend on what they are willing to accept.

Republicans and some moderate Democrats oppose passing a package that would substantially increase the deficit, and if it has to be pared down to win 50 votes, a vast array of proposals — on education, health care, climate change and much more — will be competing for inclusion.

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

Bowman is a lead sponsor of the Supplemental Security Income Restoration Act, which advocates want included in the reconciliation bill and which the Social Security Chief Actuary estimates would cost $46 billion in 2022 and a total of $510 billion over the next decade. Among other things, it would increase SSI 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 bloc capable of influencing elections and making demands of elected officials.

“We were agitating from the inside, but it was outside groups that really got it on the mainstream Democratic agenda,” said Sen. Sherrod Brown, D-Ohio, who is the lead Senate sponsor of the SSI bill and has sponsored similar legislation for years alongside Rep. Raúl Grijalva, D-Arizona, and others. “They were less active when it was a Republican Senate and a president like Trump because they knew there wasn’t much at the end of the rainbow.”

Last month, advocacy groups helped organize what they said was the first bicameral briefing on SSI — essentially a presentation to congressional staff — in more than 30 years. Sen. Bernie Sanders, I-Vermont, included an SSI overhaul on a draft list of Democratic priorities. 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 Joe Biden endorsed changes to SSI 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 SSI push is one part.

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

Rebecca Vallas, a senior fellow at the Century Foundation and a leader of #DemolishDisabledPoverty, called the current effort “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 lockstep to protect the Affordable Care Act and Medicaid.”

A Century Foundation/Data for Progress poll in May found bipartisan support for increasing SSI payments to the poverty level: 91% among Democrats, 70% among Republicans, with a margin of error of plus or minus 3 percentage points.

Republicans have been largely silent on the SSI proposal specifically, though they staunchly oppose the overall reconciliation bill.

Jeffrey Miron, an economist at the libertarian Cato Institute and at Harvard, said the measure was “completely rational given the objectives” and that the main point of ideological contention was the objectives themselves. He added that SSI was not a major contributor to the deficit.

“If you think that having insufficiently generous programs is a problem, then increasing the benefits indeed addresses the problem,” Miron said. “Whether it’s good overall and whether a broad range of people would agree we should make the programs more generous is a much harder question.”

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

Felix Guzman, an SSI 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,” Guzman, 39, said.

Other recipients say they cannot pursue meaningful work because it could cost them their SSI and accompanying Medicaid coverage without providing enough income or insurance to compensate. Some want to test their ability to hold a job but do not want to risk having nothing to fall back on if they cannot.

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

The program can also discourage marriage, because a spouse’s assets — even a few thousand dollars in a retirement account — would count toward the asset limit of $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 SSI 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 SSI 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 SSDI, which is distinct from SSI 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 SSDI.

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

Cortland said the current push focused on SSI because it can be changed through budget reconciliation, whereas SSDI cannot. But he emphasized at the virtual forum last week that advocates would also work to change SSDI.

The forum, organized by the Century Foundation, included Bowman and Rep. Ayanna Pressley, D-Massachusetts, both of whom urged the roughly 17,000 people watching to pressure lawmakers.

“I know I’m preaching to the choir, and as the granddaughter of a Baptist preacher, there’s a reason why,” Pressley said. “It’s because I need the choir to sing.”