Lori Long and Mark Contreras met on Match.com in November 2015. For Long, her first date a few weeks later was at Tarpy’s Roadhouse, a restaurant in Monterey, California.
“The first few emails really clicked,” she said.she tells him about spinal disease So before he could see her, she would come forward and walk with a cane, she thought, which might have made her uncomfortable. But she didn’t want to appear to be hiding anything. So Long, 50, settled for advance disclosure.
buy now | | Our best subscription plan now at a special price
Contreras, 51, wouldn’t have minded if she hadn’t told him beforehand. Their e-mail connection was also special for him. He skipped her usual casual cafe date and asked her out to dinner because he was already as attracted to her personality as she was to her photos. “I said to her, ‘I think we’ll be fine,'” he said. “And we were.”
Two years later, Long nearly broke his heart. Within weeks of Tarpee’s date, both knew they had found their forever partner. Three months after saying that, Long sat in his seat and spoke. “I said to him, ‘Mark, we can’t go through life together,'” she said.
She still wanted to marry him, but not if that meant giving up the medical insurance she relied on to live.
Long is caught in a government quagmire. She was diagnosed with ankylosing spondylitis when she was 15 years old. wheelchairAs a teenager, when she first fell ill, her family faced financial difficulties trying to pay for her medical bills, even though she had private insurance at the time. She said she saw
She is considered a “child of an adult with a disability” because she is eligible for Social Security benefits through an adult program whose medical disability began before the age of 22. The designation, known as her DAC, applies to 1.1 million Americans, according to the Social Security Administration’s website.
Even if you are qualified, if you marry someone who is not, you will not be able to continue receiving benefits in principle. invalid or retired. (For a brief period after same-sex marriage became federal law in 2015, marrying a same-sex person was also a workaround to avoid losing benefits. from “husband and wife” to “spouse.”)
The long-held marriage code is caught up in outdated ideas that underestimate people with disabilities. “When they drafted the Social Security Act, they didn’t think young people with disabilities were material for marriage,” she said. “People never thought we had dreams and hopes like everyone else. We do.”
Long and Contreras are accountants and currently engaged to the Sun Street Center, a non-profit organization that provides education for alcohol and drug addiction prevention in Salinas. However, a marriage that allows for Long’s loss of profits is not financially acceptable for them. Adding her to his health insurance would be prohibitively expensive. Plus, it doesn’t offer the same kind of coverage as Medicaid.
Aside from a $1,224 monthly DAC scholarship, Long’s only source of income is a part-time sales job at a home goods store in Sand City, California. There, she earns her hourly wage in her teens (the company has a policy prohibiting disclosure of wages).
But Long and Contreras’ insistence on being legally recognized as spouses is undiminished. When Long told him about it, marriage After finding out about it in March 2017, he responded in a way she called “almost perfect.”
Lori Long and fiancé Mark Contreras will lose their Medicaid benefits if they get married (Clara Mokri/The New York Times)
“He said, ‘Lori, we’re going to work this out,'” she said. I will still love you tomorrow.
And they are not alone. Long is one of a nationwide network that advocates for social security law change. marriageThey include not only DAC recipients like her, but also the large group of Americans with disabilities (approximately 4 million) who receive SSI (Supplemental Security Income).
In September 2019, Long reached out to Rep. Jimmy Panetta, a Democrat for California’s 20th congressional district. Earlier this year, he introduced the Disabled Marriage Equality Act. The law includes a provision called “Lori’s Law” that removes the DAC’s restrictions on marriage.
California Senator Anna Caballero also introduced a state resolution passed this month calling on the federal government to end DAC marriage restrictions.
“The resolution does not change federal law,” said Aisha Elaine Lewis, staff attorney for the Disability Rights Education and Defense Fund. “California is just saying, ‘Congress, we support the loli law and we want it to pass.'”
Changes at the state and federal level are “a real possibility,” but “it will be a long and difficult road,” Lewis said.
Lewis added: hindrance“
It is difficult to tally the number of couples who choose to remain single because of the DAC and SSI marriage penalties. Lewis said all beneficiaries would be affected, whether they were in a romantic relationship or not. They are influenced because of the way it influences their choices about,” she said.
Gabriela Garbero of St. Louis, for example, feels deprived of her right to marry every day.
Garbero, 31, was born with Spinal Muscular Atrophy Type 2, a rare muscle-wasting disorder. She used a wheelchair from an early age. “Basically, when the brain tells the muscles to move, the muscles can’t hear it,” she said. Garbero receives social security disability insurance checks for $1,150 each month.
But if she marries her non-disabled fiancé, Juan Johnson, 28, not only will she likely lose that money, but she won’t be able to set a date for her wedding. It also supports SSI. She needs her SSI designation to maintain her health care. “SSI is my gateway to Medicaid eligibility,” she said. “Medicaid keeps me alive.”
Galbero graduated from St. Louis University Law School in 2021. She plans to sit the Missouri bar exam in 2023 and is writing a book on systematic oppression. hindranceWhen she and Johnson got engaged on Jan. 1, 2021, she ran a few numbers. She decided that if she gave up Medicaid for her marriage, it would cost Johnson a home care assistant to look after her while working in information technology. $100,000 to $200,000 per year.
Although she is eligible for his health insurance as a spouse, Galbero said, “It would be woefully inadequate to meet my health needs.”
When they drafted the Social Security Act, they didn’t think young people with disabilities were a factor in marriage,” Long said (Clara Mokri/The New York Times).
“So unless one of us wins the lottery or starts making $500,000 a year, wedding,” she added.
A pocket of hope emerged.
On Feb. 12, interactive couple Caitlin A. Carr and Jonathan Heidenreich married in a self-bonding ceremony at Coffee Tree Roasters, the Pittsburgh coffee shop where they live. Medicaid and Medicare Carr, an SSDI beneficiary with a I had to quit my job.
In January, the Pennsylvania legislature enacted legislation passed in 2021 to expand eligibility for a state program called Medical Assistance for Workers with Disabilities. The change will allow Kerr, 35, who currently works 10 hours a week from her home as a nursing educator, to remain on Medicaid as a married woman. Prior to the new law, it was impossible for her and Heidenreich to qualify for Medicaid through state programs because of the income threshold above the poverty line.
Heidenreich, 31, is a high school English teacher who quit his job in 2015. pandemic Stay home with Carr. He currently works in mortgages. In 2019, he proposed after a year of dating.
Heidenreich considers his wife and others as heroes who helped persuade the state to change its program. I pushed myself even though I was limited,” he said.
Kerr is going to keep pushing. “What keeps us in forced poverty and prevents us from forming a family is hindrance We don’t deserve the connections other people have,’ she said. I am going.”
This article was originally published in The New York Times.
📣 Follow us for lifestyle news Instagram | twitter | | Stay up to date with Facebook and the latest updates!
