Momentum is building in Congress to rewrite antiquated laws that strip Americans with disabilities of their federal benefits after marriage. Two bills currently in Congress would end these financial penalties.
The laws were written into the Social Security system decades ago. Bethany Lilly, a disability rights advocate, said an overhaul is far past due.
“I don't think 50 years ago people would be thinking about people with disabilities getting married, whereas now that's just a perfectly normal, expected part of life for a lot of people,” Lilly said. “But these systems haven't been updated, and so they're still penalizing people.”
As senior director of income policy at The Arc of the United States, an organization based in Washington, D.C. that represents people with disabilities, Lilly advises couples to speak with a lawyer before they think about getting married.
“That's an unfortunate position to put folks with disabilities into,” she said.
She adds it’s also the wrong message to send.
“As a person with a disability and as somebody who identifies as LGBTQ, for me, marriage means acceptance by society,” Lilly said.
The rules around marriage for people who rely on federal disability benefits are complicated. While some couples face a deduction in their monthly payments, others lose benefits and insurance.
Lori Long of Salinas, California, had no idea about the rules when she got engaged back in 2016. Her fiancé, Mark Contreras, proposed on Christmas Day. Long started shopping for a wedding dress, thought about possible venues, and looked at invitations. But months later, she and Contreras had to shelve their plans. The couple went from happiness to heartbreak.
“Disappointment and some anger, too,” Long said. “I thought, how could a change in marital status change my disability status? But it did,” said Long.
Long, 50, has been disabled since she was a child. She has an autoimmune disorder that causes painful fractures in her spine. She’s endured multiple major surgeries, moving from a wheelchair to a cane.
Long is considered a "Disabled Adult Child," or DAC, by the Social Security Administration. The designation makes her eligible for federal benefits. People who qualify have a disability that started before the age of 22 and have a parent who died or is disabled or retired. Benefits are on the parent’s earnings record for Social Security.
After Long's engagement, she learned that marrying Contreras, who isn’t disabled, would mean losing her federal disability benefits and Medicare. Under current law, DAC recipients lose their federal benefits if their spouse is not a Social Security beneficiary under the assumption the spouse can cover medical expenses. Long works part-time in retail and Contreras, 51, works full-time for a nonprofit. But his insurance wouldn’t cover Long’s medical needs. Her healthcare isn’t just a few trips to the doctor every year. Often, she said, she’ll be in the hospital once or twice a year, which can cost upwards of $50k per visit. She also has an IV power port that needs to be checked every month.
“In today's world, our medicine, for profit, is very expensive and it's complicated,” Long said. “And it's not 1950 anymore. We mostly live in a two-income society.”
Together, the couple decided to fight.
“I told her, ‘we'll figure this out,’” Contreras said. “We'll get married. I don't know when or where, but we'll figure it out.”
Long started a petition called Lori’s Law and began working with her congressman, U.S. Representative Jimmy Panetta (D-CA).
“I thought, boy, this is kind of like a David and Goliath sort of a fight, one person going up against big government,” Long said. “But I felt that I had to try.”
Two and half years later, Panetta introduced the Marriage Equality For Disabled Adults Act in the House this January. It would ensure that the roughly one million people who are considered disabled adult children wouldn’t lose their federal disability benefits if they got married.
“We just feel that's an antiquated and borderline cruel law that should be changed,” Panetta said.
Another bill in the Senate would increase the benefit level and end the marriage penalty for people on Supplemental Security Income (SSI), which supports eight million low-income seniors and people with disabilities. Senator Sherrod Brown (D-OH) introduced the legislation last June. Under current law, married couples are docked 25 percent of their SSI benefits.
“It makes no sense from a logic viewpoint,” Brown said. “It makes no sense from a moral viewpoint. It makes no sense from a religious viewpoint.”
Senator Elizabeth Warren, D - Mass., recently called for passage of the SSI Reformation Act of 2021.
“Supplemental Security Income is a critical lifeline for millions of lower-income older Americans and people with disabilities, but it’s punitive rules have created barriers to getting married and saving for the future,” Warren said in a written statement.
Jason Endres of Wisconsin suffered the consequences of SSI’s marriage penalty. Endres, who has spina bifida, met his wife when they were children at a camp for kids with disabilities. Despite the cut to their benefits, they decided to get married for religious reasons. The couple recently celebrated their 25th wedding anniversary.
“We were struggling then and we struggled after we got married,” said Endres. “There are many people with disabilities hurting right now and we are tired of being third and fourth-rate citizens. We should be all first-class citizens.”
For Lori Long, this Valentine’s Day is a painful reminder that her wedding has been on hold for five years. She looks forward to her wedding day and is excited at the thought that “no will ever have to go through this again.”
“For me, marriage matters because it's a fundamental right,” Long said. “Marriage matters because I would get to celebrate our love with friends and family. I would get to participate in a societal norm that everyone else takes for granted.”
She and her fiancé aren’t giving up on saying “I do.”
“Love is very powerful,” Long said. “And I think when two people are able to tap into that energy then look out world because that kind of loving energy is close to unstoppable.”
Clarification: This post has been updated to clarify the rules for DAC recipients.