“We just want to be married and enjoy a married life together as people in love want to do without me losing the right to live,” says Lori Long, 52, of Salinas, California. Her situation is not rare. Thousands of Americans with disabilities face an unconscionable choice: to marry the one they love or to keep the disability benefits that allow them to live on their own.
Lori Long and fiancé Mark Contreras were taken aback. Long, who has ankylosing spondylitis since childhood, discovered she would give up the disability benefits she relies on by marrying Contreras. “We felt we were forced into this decision not to marry,” she said to TODAY.com. “I not only will lose the monthly stipend, I will also lose my health care insurance.” This is not only Long and Contreras’ dilemma. Disabled individuals across the nation are confronted with the harsh reality that marriage could mean losing their much-needed benefits.
The issue is with federal benefits like Supplemental Security Income (SSI) and Medicaid, which have what is termed a “marriage penalty.” With MDA Quest, when two people on SSI marry, their incomes are reduced by 25%. The rationale behind the penalty is because it is believed that a couple can manage on lower incomes as a couple than were they to stay single. But such an assumption ignores the particular financial problems that are faced by most people with disabilities. To clarify, Gabriella Garbero, a lawyer with spinal muscular atrophy, told MDA Quest that her home-based care costs would skyrocket to $200,000 a year if she were to lose Medicaid coverage when she married.
Money issues are tip of the iceberg. Emotional toll is significant. Rebecca Vallas, head of the National Academy of Social Insurance, pointed out this issue on TODAY.com, stating, “The message is that there isn’t marriage equality for disabled people in the United States.” Seconding her is Ayesha Lewis, an attorney with the Disability Rights Education and Defense Fund, who stated, “These barriers to marriage are patronizing. They treat people as if they’re not able to live the kind of full lives that we know people with disabilities are capable of and live every day.”
The SSI program, established over 50 years ago, has asset limitations that have not been updated since the 1980s. Presently, a person on SSI cannot possess over $2,000 in assets, whereas a couple can possess only $3,000 in joint assets. The MDA Quest makes a point with Gabriella Garbero’s case, who has been forced to postpone her wedding for life since marrying her fiancé will involve forfeiting Medicaid coverage for her vital care at a cost of $100,000 to $200,000 each year.
These marriage penalties have profound financial impacts. Estimates have suggested that more than 7.6 million Americans on SSI are subject to these marital status requirements. Even legally single couples may be penalized if they are interpreted to appear to present themselves as married and thus have their benefits reduced. These restrictions place love at odds with essential benefits for many disabled individuals.
The psychological effect is also enormous, as most are faced with the decision of whether to get married or stick with their economic stability. As Impact explains, the dilemma is for someone like Timothy, who would risk losing Medicaid if he marries and goes over the assets limit, even risking the loss of the care he needs to survive. Despite the hurdles, assistance is on the way.
Legislation such as the SSI Savings Penalty Elimination Act, introduced by Senators Bill Cassidy and Sherrod Brown, seeks to increase asset limits for SSI recipients, potentially paving the way for more disabled individuals to marry without fear of loss of benefits. The legislation seeks to raise asset limits to $10,000 for single individuals and $20,000 for couples, indexed to inflation. This is supported by several religious communities and disability groups as they cite mounting awareness and support in the disability community for marriage equality. The financial and emotional consequences of the marriage penalty fall outside of the couple. As explained to the University of Minnesota’s Institute on Community Integration by one self-advocate, losing benefits from a marriage might equal “a life of poverty” for many disabled people. This is more than an economic problem but, instead, an issue of fundamental dignity, humanity, and equality.
As the national debate for marriage equality for individuals with disabilities gains momentum, there remains hope for change. The re-submitted 2023 bipartisan SSI Savings Penalty Elimination Act is an attempt to update the outdated asset limits, potentially paving the way for more equitable marriage possibilities for persons with disabilities. The legislation has gained support from various religious and disability rights communities, further recognition by society of the need for change. In Ayesha Lewis words, “We value equality. We value love. We want people to be able to live the lives they want regardless of their disability status.”
