Valentine’s Day is this Sunday. For one local couple, who is very much in love, Valentine’s Day should be carefree. Instead, it’s a painful reminder of a national policy they say prevents them from tying the knot.
“I look forward to the day where I can go to the store and buy a card that says 'to my husband' instead of just 'to my, the one I love' or something like that,” said Lori Long.
She and her fiancé, Mark Contreras, have big smiles on their faces as they sit at their kitchen table and share their love story over Zoom.
“When he proposed, it solidified that he’s all in,” Long said.
Contreras, 50, asked Long to marry him on Christmas Day four years ago at his home in Salinas. They desperately long for their wedding day but a federal policy is in their way. And that policy is complicated.
A Big Price To Pay For Marriage
Long has an autoimmune disease, HLA-B27 positive ankylosing spondylitis. In severe cases like Long’s, the inflammatory disease causes bones in the spine to fuse together. She’s undergone multiple major surgeries, which have helped her transition from a wheelchair to a cane. Her medical care is expensive.
Long, 49, has been disabled since she was a child. Her disease limits her ability to work. So she was put on parent’s work record for Social Security benefits. In the eyes of the Social Security Administration, Long is a Disabled Adult Child (DAC) beneficiary. In 2018, SSA paid benefits to about 1.1 million DAC recipients. To qualify, they must have become disabled before the age of 22 and have a parent who is disabled, retired or died.
Here’s the problem. For Long and others like her, the benefits stop when they marry. That’s because Social Security assumes the new spouse will be able to support them instead of the parent. Benefits continue if the spouse is also disabled.
That means Long loses her Medicare and the monthly benefits she depends on if she marries Contreras.
“It's like holding us hostage because it's life-threatening for me to lose my health care and disability insurance,” Long said.
Contreras works full time as an accountant, but going on his insurance would be risky. Contreras was laid off at the onset of the COVID-19 pandemic. Although he was able to get another job, he temporarily lost his insurance. Long says Covered California would limit her treatment options and the doctors she can see.
Fighting To Tie The Knot
Long didn’t know there were rules about who she could marry until after Contreras got down on one knee. Just months after the proposal, Long would tell Contreras she didn’t want to stand in the way of him having a wife. But Contreras is standing by her side.
“We’re getting married. At some point in time it will happen,” Contreras said. “I see other people get married, it hurts. But I know our day is going to come.”
The couple is fighting for change with an online petition called Lori’s Law. Long has knocked on doors, contacted disability rights organizations and reached out to her local lawmakers. U.S. Representative Jimmy Panetta's office is now involved in the matter.
“This is something where you hear it and you immediately think that it is unfair,” Panetta said.
His office is exploring possible legislation, but it’s complicated. These rules were baked into the complex Social Security system decades ago. Pull one string, Panetta says, and it unravels somewhere else.
He estimates the Social Security trust fund would lose roughly $1.5 billion dollars to grant reprieves to Long and others in her position. That’s because there’s a cost savings for the federal government when people receiving disability benefits decide to get married anyway. About 3,000 DAC beneficiaries lost their benefits due to marriage in 2018, according to the SSA.
“And right now what you're seeing in Washington, D.C., is an attitude to secure Social Security, to bolster Social Security,” said Panetta.
Still, he says that’s not stopping them. The office is trying to find another revenue source to make up for the cost.
'An Impossible Choice'
Bethany Lilly, a disability rights advocate, says in addition to the 1.1 million Americans who receive DAC benefits, there are also millions of people on Supplemental Security Income (SSI) who face marriage penalties too, whether it’s a cut in their benefits or a total loss. Lilly is with The Arc, a national organization based in Washington, D.C. that represents people with intellectual and developmental disabilities. She hears heartbreaking stories all the time.
“Folks who are 18, 19, who are just starting out there, they have their first boyfriend or their first girlfriend, and they come and they say, is it true I can't get married?” said Lilly.
As senior director of income policy, Lilly focuses on policy issues surrounding Social Security benefits and other types of income support. While some couples decide to forgo their benefits in order to get married, Lilly puts it this way for others:
“They are facing the choice of, alright I will not have my health insurance and I will not be able to pay my rent or buy my groceries or I can get married. That's an impossible choice to force people into,” she said.
I will not have my health insurance and I will not be able to pay my rent or buy my groceries or I can get married. That's an impossible choice to force people into - Bethany Lilly
Lilly says lessons have been learned through the fight for marriage equality for interracial couples and same-sex couples that not getting married has profound consequences.
The Disability Rights Education and Defense Fund (DREDF) is also working with Long. Legal Director Claudia Center said DREDF is investigating the possibility of a lawsuit.
“Over recent years, the Supreme Court has recognized that the right to marry is a fundamental right and this marriage penalty is interfering with the rights of people like Long who cannot get married without very devastating consequences to her life,” said Center.
Dreaming Of Their Wedding Day
Long and Contreras hope that one day, the financial barriers associated with their marriage will be a thing of the past. They daydream about their wedding day and the church bells ringing.
“The biggest thing is to see her smiling face walking down the aisle,” imagined Contreras. “And of course we have our first dance and we both need to train for that.”
Long looks forward to their vows.
“We are husband and wife. And it means something. It just does, that added title.”
Whether it's on an official marriage certificate or a Valentine’s Day card.