Amber and Devin Weise lived in distant states when they met in an online social media group for Christian singles. They quickly became a couple, spending hours texting or talking on video chat. After several months of long-distance dating Devin wanted to propose, but thought it was proper and more romantic to do it in person.
Amber hinted she’d be OK with a proposal on a video call. Devin proposed and sent the ring in the mail.
It wasn’t until after they married that they learned the federal disability benefits program Amber relied upon penalizes couples who marry. Amber lost her monthly income check and the health care that came with it.
Amber is one of 7.4 million people who rely upon Supplemental Security Income, or SSI, a federal program that provides monthly cash assistance to disabled and older people with little income and resources. And for Amber and others, being on SSI is also the way they get health insurance.
To qualify for SSI, recipients are required to do something that few couples could manage: keep their savings and assets under $3,000.
An NPR investigation of SSI — a program run by the Social Security Administration — found that many disabled people get caught by this “marriage penalty,” a left-over rule from decades ago when government policies didn’t account for disabled people finding love and getting married.
NPR interviewed dozens of people who rely on SSI but, as a result, say they are stuck because of the program’s treatment of those who marry.
They told stories of getting married and then losing SSI or getting married and then needing to keep their wedding vows a secret.
They spoke of living with a partner without getting legally married, but still needing to hide it from Social Security employees who could deny their benefits.
Some say they’ve made painful decisions to close themselves off from love and romance altogether — in order not to risk losing SSI.
SSI was created in 1972 and started paying out benefits 50 years ago. The program aimed to lift disabled, blind and elderly people with little money out of poverty.
But the program’s rules have changed little since then.
The so-called marriage penalty, for instance, results from SSI’s limit on how much someone can own in savings and assets. It’s $2,000 for an individual and $3,000 for a couple. Those levels haven’t budged since 1989.
If it had kept up with inflation from the program’s start, the limit today for an individual would top $10,000. For a couple, it would be close to $17,000.
Among the things SSI counts as assets: Cash, bank accounts, stocks, life insurance, retirement accounts, some household goods. If a recipient lives with a spouse or parent, their resources are counted, too. The rules exempt one car and a home.
There are savings accounts with tax advantages that people can use to shield some assets, but these programs often require a lawyer or benefits counselor to set up and are seldom used.
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“Nobody should be punished for getting married,” says Amber Weise.
Amber was born with spinal muscular atrophy, a rare condition that weakens her muscles and lungs. She qualifies for SSI because she’s unable to work long-term.
She relies upon a lot of help, all day long. Aides help with personal care she can’t do for herself — from getting dressed to getting in and out of her wheelchair, from eating to toileting.
Then nurses do crucial care like operate machines that suction secretions that build up, hour-to-hour, in her lungs.
That care — which keeps her healthy and out of a hospital or nursing home — is affordable only through Medicaid, the state and federal health insurance for people with little income. Private insurance, that people get through their jobs, does not pay for continuous in-home aides and nurses. It would cost well over $100,000 a year to pay for all that care on her own.
Because she’s on SSI, Amber automatically qualifies for Medicaid. In almost every state, when someone gets SSI, they’re made eligible for Medicaid, too.
When they met online, Devin lived in Oregon. Amber, in Illinois. It was important for them, and their religious beliefs, to marry.
Once Devin moved across the country and the couple married, they quickly discovered that exceeding SSI’s limits on assets was almost unavoidable. Devin worked, making a modest wage cleaning hospital rooms. When he got a small pay boost, his new pay check nudged the couple over the asset limit for good.
Amber lost her SSI benefits and the medical insurance that came with it.
Devin quit his job in order to become his wife’s full-time caregiver.
Says Devin: “We’re being penalized for just trying to live.”
“That’s not how marriage should be treated,” says Amber. “It should be honored and celebrated. Not: You’re going to risk your life if you do this.”
Amber and Devin’s situation is not unique. Another woman who spoke to NPR said she felt forced to divorce her husband in order to keep the health care that came with her SSI eligibility.
“We made the decision to get divorced — on paper,” said the woman, who asked to remain anonymous because she’s breaking SSI’s rules. “The reality is that we’re still a couple. We’re still together.”
Just living as if you’re married is enough to get the woman kicked off of SSI. Social Security calls that “holding out” — living as a couple as if married, just without the legal recognition.
To stay eligible for SSI, the couple hide their relationship. They still live together, but they rent separate apartments. When a state caseworker visits, the woman takes down all the photos around the house of her with her partner, just to be sure.
“We’re both proud of our relationship,” the woman says.
Times change but a law doesn’t
Attorney Ayesha Elaine Lewis leads a national campaign to end the SSI program’s limits on marital assets. “People want to have that freedom to love who they love, love openly, love boldly,” says Lewis of the Disability Rights Education and Defense Fund, or DREDF.
There’s been a revolution in the expectations for disabled people’s lives–in the decades since SSI was created.
When President Richard Nixon made the proposal that started SSI in 1972, children with disabilities were still largely excluded from public schools. In 1975, Congress passed the first law that guaranteed disabled children a right to get an education.
It was almost two decades before passage in 1990 of the Americans with Disabilities Act, which banned discrimination against people with disabilities.
“There’s anger, there’s a feeling of betrayal sometimes,” says Lewis. “Because the ADA has a beautiful promise of full integration into society, of people with disabilities being able to live their destinies and make their life what they want of it. But with these rules still in place, it’s obvious that the full promise of the ADA hasn’t been implemented.”
A spokesperson for Social Security told NPR that they don’t keep track of how many people lose benefits because they’re married. And that it’s up to Congress to change the policy.
Earlier this month, Social Security Commissioner Martin O’Malley called for raising the asset limit. Bipartisan legislation before Congress would do that, high enough to effectively end the marriage penalty. (Another bill would end a marriage penalty for a smaller number of disabled adults who get Social Security benefits.)
Bills to raise asset limits have stalled, partly because of cost. Social Security’s actuaries estimate that raising the limit to $10,000 would add $9.8 billion to the program over 10 years because more people would become eligible for benefits.
Kathleen Romig has written that the cost would be justified because by raising the asset limit to $10,000 for an individual and $20,000 for couples more people would qualify for SSI and keep their benefits, and that would make it easier for Social Security to administer the program.
Romig recently went to work as a senior advisor for O’Malley. When she spoke to NPR, she was at the Center on Budget and Policy Priorities, in charge of Social Security and disability policy.
Marriage, Romig notes, wasn’t expected of people with significant disabilities in the early 1970s.
In fact, sometimes it was even illegal.
Romig remembers that when she applied for a marriage license in 2004 in Michigan, she was required to attest that she was not “an idiot or an imbecile, it literally said that.” Those, she notes, were already offensive words by then.
But a law still existed in Michigan — first passed in 1846 and expanded in 1905 — that made it a felony for someone to marry if they were “insane,” an “idiot,” an “imbecile” or “feeble-minded."
The law in Michigan, and similar ones in more than 40 states, came from a period of belief in eugenics, a since discredited scientific and racist theory that certain groups of people were genetically superior and that others should be restricted or discouraged from having children. Disabled people, under laws that reflected those values, were taken from families and isolated in institutions. Disabled women — an estimated 70,000— were forcibly sterilized.
As times have changed, SSI did not, Romig notes. “SSI is stuck in the past,” she says.
Gabriella Garbero, a St. Louis lawyer who would like to marry her long-time partner, notes that while SSI’s policy doesn’t prohibit disabled people from marrying, it does penalize marriage. She compares that “exclusion” to the way other marginalized groups were once blocked from marriage, like same-sex and interracial couples.
That disabled people still get penalized, she argues, sends a negative message — to disabled people on SSI like her and to people without disabilities — that disabled people are “just mooching off of government … just an expense, not a population that has dreams and hopes and wants and needs, just like everybody else.”
Speak now, or shut it!
Last September, DREDF, the disability legal group, set up a stage with red flowers and hearts in front of the U.S. Capitol on the National Mall in Washington and sponsored a marriage commitment ceremony to call attention to SSI’s marriage rules.
“We are now going to recite our vows,” said Patrice Jetter, a disabled woman from New Jersey, who officiated, wearing a multi-colored dress and a rainbow wig. “But before we do: If there is anyone here who thinks that disabled people should not be married, speak now or shut it!”
Jetter said she is a former SSI recipient who was blocked by the marriage penalty from marrying her long-time partner.
More than a dozen couples, including women in wedding dresses, came together for the unofficial ceremony.
“We would like to get married,” Jetter said, leading the vows as the crowd repeated after her. “And to be able to pay rent and bills. And not end up living. In a cardboard box.”
Amber and Devin Weise drove to Washington from Illinois.
Amber, wearing an ivory gown and veil in her power wheelchair, and Devin, wearing a vest and pink bow tie, held hands as they repeated the vows with the crowd.
They said they were surprised when, as a result of marrying, Amber lost her SSI and Medicaid. Devin is 27 now. Amber is 25. At the end of last year, the Weises moved from Illinois to Wisconsin where she can get more hours of care.
After two and a half years off of SSI, Amber and Devin got their assets back under the $3,000 limit. Amber reapplied for SSI and recently got back on the program.
Amber said whenever she looks at her marriage license “I am just angry.”
“I’m in love with the guy whose name is on it. It’s not that I have a problem with him,” she said. “It’s just that I’m angry because that piece of paper has caused us so much destruction.”
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