In the US, when a disabled person marries a healthy person, they have to give up government health care benefits and policies.
Lori Long and Mark Contreras met on a dating website in November 2015. They had their first date at a restaurant in Monterey, California a few weeks later. Lori was concerned that if she talked about a spinal condition that made her lean forward and walk with a cane before the meeting, Contreras wouldn’t want to see her. However, the 50-year-old woman decided to be honest from the start.
Contreras, 51, an accountant, doesn’t mind whether she tells her in advance or not. Connecting via email, he found this woman special. He was attracted to Long’s personality and photo, so he decided to invite her to dinner, skipping the usual coffee date. “I told her ‘I think we’ll be fine’ and yes,” he said.
Weeks from their first date, the two knew they belonged together. But three months after Contreras proposed and was accepted, Lori said they couldn’t stay in the same house. She still wants to get married, but if she gets married, she will no longer receive benefits and healthcare for the disabled.
Lori Long and Mark Contreras of Salinas, California, have been engaged since December 2016, but did not marry because of fears that Ms. Long would lose her health benefits. Image: New York Times
At the age of 15, she was diagnosed with ankylosing spondylitis, a condition that causes broken bones, sometimes requiring a wheelchair. Since she was a teenager, Lori has watched her parents struggle to pay for her medical treatment, despite having private insurance.
Because of that, she was eligible for adult disability benefits before age 22. The policy, called DAC, is for 1.1 million Americans, according to the Social Security Administration’s website.
However, under the same policy, people with disabilities cannot continue to receive benefits if married to a healthy person or retired. “When they wrote the Social Security law, they didn’t think young people with disabilities could get married. People didn’t think we had dreams and hopes like everyone else,” Lori said.
Currently, she and Contreras are still attached. But if they lose the disability benefits, they don’t have enough money to live. Aside from the $1,224 monthly allowance, Ms. Long’s only source of income is part-time sales at a hardware store in Sand City, California. There, she was paid an hourly, teen-age rate.
But the efforts of Ms. Lori and Mr. Contreras to be recognized as a legal husband and wife while still ensuring their rights have not waned. She is one of the people who are contributing to changing the US Social Security law, because it is related to marriage. They are not just DAC recipients but a larger group, about 4 million people, who receive SSI (adult disability policy) or receive Supplemental Security income.
In September 2019, Ms. Long contacted a California Democrat. Earlier this year, this person introduced to parliament a draft of the Marriage Equality for Adults with Disabilities Act, which includes a provision called the “Lori Law” that removes the DAC marriage restriction.
California Senator Anna Caballero also introduced a resolution passed in August calling for the federal government to end the DAC marriage restriction.
The resolution may be possible, but it will be a long and challenging journey, said Ayesha Elaine Lewis, an attorney with the Defense and Disability Rights Education Foundation.
It is difficult to estimate the number of couples who choose to stay single because they are constrained by the policies of DAC and SSI. However, Ms. Lewis said, all beneficiaries are affected whether they want to get married or not.
Gabriella Garbero of St. Louis, constantly feeling robbed of the right to marry. The 31-year-old girl has congenital type 2 spinal muscular atrophy, a rare muscle wasting disease. She has used a wheelchair since childhood. “When the brain tells the muscles to move, they can’t follow,” she explains her condition. Garbero receives a monthly Social Security disability check, priced at $1,150.
At risk of losing that money forever if she married Juan Johnson, 28, a boyfriend without a disability, so Garbero did not set a wedding date. She is eligible for SSI policy, a condition for receiving Medicaid (health care insurance for people with low income, disability…). “Medicaid is what keeps me alive,” she said.
Ms. Garbero graduated in 2021 from St. Louis. She plans to take the exam to practice law in 2023 and is writing a book about systemic oppression because of disability. When she got engaged on January 1, 2021, she started planning this.
Garbero determined that if she had to give up Medicaid to get married, the cost of her home health care would cost her $100,000-200,000 a year. Her husband, who works in the IT field, couldn’t be there to help her get around and take care of basic needs.
Married, she will be entitled to her husband’s health insurance, but the insurance policy still cannot meet the health claim. “Unless either wins the lottery or earns half a million dollars a year, there’s no wedding. Marriage is a cultural club you can’t join if you’re disabled,” Garbero concludes.
Many hopes appear
On February 12, two lovers, Kaitlin A. Kerr and Jonathan Heidenreich, were married in a self-union ceremony at a coffee shop, in Pittsburgh, where they live. Kerr, an SSDI (social security disability insurance) and Medicare beneficiary, was looking for a way to keep her benefits while living with the one she loves.
Earlier this year, the Pennsylvania Legislature enacted a bill passed in 2021 that expands eligibility for a state program called Medical Assistance for Workers with Disabilities, which helps People with disabilities enjoy more practical policies.
These changes allow Kerr who now works 10 hours a week, from home to receive Medicaid, even though he is married. Before the new law, if she was married, she was not eligible for Medicaid because the couple’s income threshold was above the poverty line.
“Being locked in poverty and preventing us from starting a family sends a message to people with disabilities that we don’t deserve a life someone else has. The next step is to change federal law. We are. will take it one step at a time so that no one is left behind,” she said.
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