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鈥檇 be OK with a proposal on a video call. Devin proposed and sent the ring in the mail.
It wasn鈥檛 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 鈥� a program run by the Social Security Administration 鈥� found that many disabled people get caught by this 鈥渕arriage penalty,鈥� a left-over rule from decades ago when government policies didn鈥檛 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鈥檚 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鈥檝e made painful decisions to close themselves off from love and romance altogether 鈥� 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鈥檚 rules have changed little since then.
The so-called marriage penalty, for instance, results from SSI鈥檚 limit on how much someone can own in savings and assets. It鈥檚 $2,000 for an individual and $3,000 for a couple. Those levels haven鈥檛 budged since 1989.
If it had kept up with inflation from the program鈥檚 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.
鈥淣obody should be punished for getting married,鈥� 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鈥檚 unable to work long-term.
She relies upon a lot of help, all day long. Aides help with personal care she can鈥檛 do for herself 鈥� 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 鈥� which keeps her healthy and out of a hospital or nursing home 鈥� 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鈥檚 on SSI, Amber automatically qualifies for Medicaid. In almost every state, when someone gets SSI, they鈥檙e 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鈥檚 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鈥檚 full-time caregiver.
Says Devin: 鈥淲e鈥檙e being penalized for just trying to live.鈥�
鈥淭hat鈥檚 not how marriage should be treated,鈥� says Amber. 鈥淚t should be honored and celebrated. Not: You鈥檙e going to risk your life if you do this.鈥�
Amber and Devin鈥檚 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.
鈥淲e made the decision to get divorced 鈥� on paper,鈥� said the woman, who asked to remain anonymous because she鈥檚 breaking SSI鈥檚 rules. 鈥淭he reality is that we鈥檙e still a couple. We鈥檙e still together.鈥�
Just living as if you鈥檙e married is enough to get the woman kicked off of SSI. Social Security calls that 鈥� 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.
鈥淲e鈥檙e both proud of our relationship,鈥� the woman says.
Times change but a law doesn鈥檛
Attorney Ayesha Elaine Lewis leads a national campaign to end the SSI program鈥檚 limits on marital assets. 鈥淧eople want to have that freedom to love who they love, love openly, love boldly,鈥� says Lewis of the Disability Rights Education and Defense Fund, or DREDF.
There鈥檚 been a revolution in the expectations for disabled people鈥檚 lives鈥搃n 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.
鈥淭here鈥檚 anger, there鈥檚 a feeling of betrayal sometimes,鈥� says Lewis. 鈥淏ecause 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鈥檚 obvious that the full promise of the ADA hasn鈥檛 been implemented.鈥�
A spokesperson for Social Security told NPR that they don鈥檛 keep track of how many people lose benefits because they鈥檙e married. And that it鈥檚 up to Congress to change the policy.
Earlier this month, Social Security Commissioner Martin O鈥橫alley called for raising the asset limit. Bipartisan legislation before Congress would do that, high enough to effectively end the marriage penalty. (Another bill would for a .)
Bills to raise asset limits have stalled, partly because of cost. Social Security鈥檚 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 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鈥橫alley. 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鈥檛 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 鈥渁n idiot or an imbecile, it literally said that.鈥� Those, she notes, were already offensive words by then.
But a 鈥� first passed in 1846 and expanded in 1905 鈥� that made it a felony for someone to marry if they were 鈥渋nsane,鈥� an 鈥渋diot,鈥� an 鈥渋mbecile鈥� or 鈥渇eeble-minded."
The law in Michigan, and similar ones in , 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 鈥� 鈥� were forcibly sterilized.
As times have changed, SSI did not, Romig notes. 鈥淪SI is stuck in the past,鈥� she says.
Gabriella Garbero, a St. Louis lawyer who would like to marry her long-time partner, notes that while SSI鈥檚 policy doesn鈥檛 prohibit disabled people from marrying, it does penalize marriage. She that 鈥渆xclusion鈥� to the way other marginalized groups were once blocked from marriage, like and couples.
That disabled people still get penalized, she argues, sends a negative message 鈥� to disabled people on SSI like her and to people without disabilities 鈥� that disabled people are 鈥渏ust mooching off of government 鈥� just an expense, not a population that has dreams and hopes and wants and needs, just like everybody else.鈥�
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鈥檚 marriage rules.
鈥淲e are now going to recite our vows,鈥� said Patrice Jetter, a disabled woman from New Jersey, who officiated, wearing a multi-colored dress and a rainbow wig. 鈥淏ut before we do: If there is anyone here who thinks that disabled people should not be married, speak now or shut it!鈥�
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.
鈥淲e would like to get married,鈥� Jetter said, leading the vows as the crowd repeated after her. 鈥淎nd to be able to pay rent and bills. And not end up living. In a cardboard box.鈥�
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 鈥淚 am just angry.鈥�
鈥淚鈥檓 in love with the guy whose name is on it. It鈥檚 not that I have a problem with him,鈥� she said. 鈥淚t鈥檚 just that I鈥檓 angry because that piece of paper has caused us so much destruction.鈥�
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