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How an outdated Social Security policy is preventing couples from marrying

MARY LOUISE KELLY, HOST:

In the United States, marriage is considered a fundamental human right. But there is one group that gets harshly penalized when they marry. We're talking about people with significant disabilities, people who rely upon a government benefits program for their income and sometimes for the medical care that keeps them healthy, even keeps them alive. They can lose it all when they marry. NPR investigative correspondent Joseph Shapiro explains.

JOSEPH SHAPIRO, BYLINE: Normally, I'd start the story by telling you the name of the person I'm about to introduce. But with this woman, I can't. We agreed to give her anonymity because she's describing something she did that could get her into trouble - big trouble. She got married.

UNIDENTIFIED PERSON: A very intimate and small ceremony.

SHAPIRO: She's talking about her wedding in 2021 in front of a handful of family.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED OFFICIANT: Under the eyes of God, I proudly pronounce you husband and wife. You may kiss the bride.

UNIDENTIFIED PERSON: Oh, I love you (ph).

(APPLAUSE)

UNIDENTIFIED PERSON: Just in our living room.

SHAPIRO: The reason getting married was dangerous is because the woman is disabled.

UNIDENTIFIED PERSON: So spinal muscular atrophy is a degenerative neuromuscular condition.

SHAPIRO: She's a quadriplegic. She's 35. She needs aides, personal care assistants, to help her get dressed, to eat, to get into her wheelchair and to operate the machine that helps her cough through weakened lungs, to suction secretions from her throat multiple times day and night. That's the care that keeps her healthy and out of the hospital or a nursing home. The federal program that grants that medical care can end if she's found to be married, which is why last fall, the woman and her husband then divorced, sort of.

UNIDENTIFIED PERSON: We made the decision to get divorced on paper.

SHAPIRO: Legally, they're divorced.

UNIDENTIFIED PERSON: But the reality is that we're still a couple. We're still together.

SHAPIRO: For her, just saying that out loud could be a matter of life and death because being married or just living as if you're married is enough to get someone like this woman kicked off of the federal program called Supplemental Security Income, or SSI. It's SSI that qualifies her for Medicaid, the state and federally funded health insurance program. Medicaid pays for her aides and nurses.

UNIDENTIFIED PERSON: I require 24/7 assistance.

SHAPIRO: To pay on her own would run more than $200,000 a year. Private insurance, the kind you get through your job, won't pay for it. So to keep her Medicaid, the woman needs to stay eligible for SSI. But that's not easy because the program's rules are so complicated and out of date. One of SSI's rusty rules is that to qualify, you can't have more than $2,000 in savings and other assets or $3,000 for a couple. Those numbers haven't budged since 1989.

UNIDENTIFIED PERSON: I'm proud - we're both proud of our relationship.

SHAPIRO: The woman's partner, her ex-husband, isn't disabled. Right now, he doesn't work. He does a lot of the caregiving for her. To stay eligible for SSI, they hide their relationship. They rent separate apartments, although they spend most of their time together. And when her state caseworker comes, the woman takes down the photos of her partner. Ayesha Elaine Lewis is an attorney with the Disability Rights Education & Defense Fund, or DREDF. She's leading a national campaign to end the SSI marriage penalty.

AYESHA ELAINE LEWIS: We hear a lot from folks who have this expectation that they're going to live a full life. We no longer expect people with disabilities to live in institutions away from their communities.

SHAPIRO: There's been a revolution in the expectations for disabled people's lives since SSI was created in 1972. That was three years before the first law that guaranteed kids with disabilities, who were often excluded from school, could get an education and almost two decades before the Americans with Disabilities Act, which banned discrimination against people with disabilities.

LEWIS: There's anger. There's a feeling of betrayal sometimes 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.

SHAPIRO: Social Security, which runs the SSI program, told us 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.

(SOUNDBITE OF ARCHIVED RECORDING)

PATRICE JETTER: We are now going to recite our vows. But before we do, if there is anyone here who thinks that disabled people should not be married, speak now or shut it.

SHAPIRO: In September, on the National Mall in Washington, D.C., with the U.S. Capitol looming behind the stage, more than a dozen couples came together for a commitment ceremony cosponsored by the disability legal group.

(SOUNDBITE OF ARCHIVED RECORDING)

JETTER: Repeat after me.

SHAPIRO: When SSI was created, people with significant disabilities weren't expected to get married.

(SOUNDBITE OF ARCHIVED RECORDING)

JETTER: We would like to get married...

UNIDENTIFIED PEOPLE: We'd like to get married...

JETTER: ...And be able to pay rent and bills...

UNIDENTIFIED PEOPLE: ...And be able to pay rent and bills...

JETTER: ...And not end up living...

UNIDENTIFIED PEOPLE: ...And not end up living...

JETTER: ...In a cardboard box.

UNIDENTIFIED PEOPLE: ...In a cardboard box.

SHAPIRO: The ceremony, an unofficial one was led by Patrice Jetter, a disabled woman from New Jersey. She wore a multicolored dress and a rainbow wig. She was formerly on SSI and blocked from marriage.

(SOUNDBITE OF ARCHIVED RECORDING)

JETTER: By the powers invested in me, I pronounce you all together. You may kiss, hug, high-five, handshake, fist bump, whatever works.

SHAPIRO: Among the couples in the shadow of the U.S. Capitol was Devin and Amber Wiese, who drove from Illinois.

(SOUNDBITE OF ARCHIVED RECORDING)

AMBER WIESE: Nobody should be punished for getting married. We are Christians, and we do believe that this is a good thing to do, you know, to get married.

SHAPIRO: Amber Wiese has spinal muscular atrophy. She, too, needs round-the-clock care. She met Devin online on a Christian social media site. In 2021, he moved from Oregon to Illinois to be with her. It was important to them and their religious belief to marry before they moved in together. That's when they learned about the marriage penalty.

(SOUNDBITE OF ARCHIVED RECORDING)

DEVIN WIESE: We're being penalized for just trying to live.

SHAPIRO: Devin made a small salary cleaning up at a hospital. Still, they quickly edged over the $3,000 asset limit. Amber lost her SSI. Her state-provided caregiving got cut to a handful of hours a day. Devin quit his job to provide the rest. I checked in with Amber recently, and she had news.

WIESE: So whenever I look at our actual marriage license, I'm just angry. I'm in love with the guy whose name is on it. It's not that I have a problem with him. It's just I'm angry because that piece of paper has caused us so much destruction, really.

SHAPIRO: She's 25. Devin's 27. Recently, they moved from Illinois, leaving her parents hours away, to Wisconsin, where she can get more hours of care. After 2 1/2 years, she just got back on SSI.

WIESE: That's not how marriage should be treated. It should be honored and celebrated, not, you know, you're going to risk your life if you do this.

SHAPIRO: There's legislation in Congress that would raise the SSI asset limit and lessen the marriage penalty. But even with bipartisan support, the measure is stalled. Joseph Shapiro, NPR News.

(SOUNDBITE OF RENE AUBRY'S "WATER FALLS") Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

Joseph Shapiro is a NPR News Investigations correspondent.