the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

Marriage Equality Is Still Not a Reality: Disabled People and the Right to Marry

By Eryn Star, NCIL Summer Policy Intern

“We’re done fighting for marriage equality; we have it now, so we have to focus on other issues instead!” is something I’ve been hearing a lot in queer spaces for the past couple of years. I understand where many people are coming from; marriage is an institution that has been used as a tool of oppression against marginalized people, and the focus on marriage equality did lead to many LGBTQ+ rights issues getting pushed aside. However, that should not be used to deny that marriage equality remains an issue in the United States for disabled people. It is necessary for us to address this because it is both a healthcare and civil rights issue.

A major reason why many disabled people are unable to marry is because of SSI and Medicaid. SSI and Medicaid are needs-based and focus on current assets and income. If you are on SSI and/or Medicaid and you marry a partner not on those programs, your partner’s income and assets are taken into consideration, and so both of your incomes and assets will be used to determine your eligibility. Because the assets and income combined often becomes too high to qualify for these programs, many disabled people have lost their SSI and Medicaid benefits. As a result, some disabled people have been forced to divorce and live separately in order to keep SSI and/or Medicaid. If both partners are on SSI and/or Medicaid, they have an even higher risk of losing their benefits. Not only would their income and assets be combined, but they are also hit by a marriage penalty. Married couples are allowed to have less in assets than the partners would be allowed to have as individuals. They receive a maximum total benefit that’s significantly less than what they would receive on individual benefits, and is in fact only slightly more than one person’s individual benefits.

As a result, disabled people are forced to choose between the benefits we need to survive and our partners. Joni Thomas and her partner (both on SSI and Medicaid) want to get married, but can’t because they wouldn’t be able to live without their benefits. Without SSI and Medicaid, they wouldn’t be able to afford personal care attendants. “I would lose my personal care,” Joni says, “Therefore I’d have no way to do ADLs (activities of daily living) so I’d have to sell my home I built and move into a nursing home. I’d lose my animals, my partner and the life I’ve built over the last 40 years.”

Stefani Shea was turned down for SSI and Medicaid because she is married. She remembers, “In fact, the woman I talked to who explained this to me actually ended our conversation by saying, ‘Well, if something ever happens between you and your husband, give me a call.’” Once again, SSI and Medicaid rules are set up to make marriage and having necessary healthcare benefits incompatible. Many disabled people are forced to hide their relationships in order to keep the benefits they need. Dominick shared that the reason why living with their partner unmarried hasn’t impacted their benefits so far is because “Everybody thinks she is my roommate sadly. We just pretend we’re best friends.” The struggle to survive in the current system takes a financial and psychological toll on disabled people’s ability to support themselves. “It’s incredibly frustrating for me to be unable to help support my family,” Stefani says, “It’s difficult not to internalize the fact that society views me as a burden and therefore penalizes us for being married.”

Some couples are able to receive spousal impoverishment protections in order to retain the benefits needed to survive. Spousal impoverishment protections historically protected the partner living in their home community from being deprived of money when the other partner was institutionalized by ensuring that a specific amount of both partners’ combined income is set aside for the partner at home. Many couples with one partner receiving home & community based services (HCBS) through a Medicaid waiver are now eligible for spousal impoverishment protections thanks to recent legislation, but unlike for disabled people in institutions, the protections are not permanent. Since thousands of disabled people are choosing HCBS over institutions, that leaves more disabled people’s lives at risk.

The current situation could change thanks to Senator Casey’s bill, S. 2000. This bill would ensure that disabled people who receive HCBS have permanent spousal impoverishment protections, which means that there would no longer be a disparity between HCBS and institutions in regards to who receives protections. S. 2000 paves the way for HCBS to become a more viable option for thousands of disabled people. Because of this, we need to begin listening to disabled people’s thoughts on how the current benefits systems can change. “We need to end income requirements for disabled people who cannot live without Medicaid or SSDI/SSI,” Dominick says, “This is the only thing that is standing in the way of a lot of us getting married. The other option is universal healthcare. This is no longer an issue except for SSI/SSDI. Still need to eradicate those work requirements but it would be a huge deal when it comes to those of us who require Medicaid.” Joni hopes for “a system that doesn’t penalize people who experience disabilities for working hard and striving to have the America Dream. A system that allows us to have retirement and a system that you can pay an amount you are over the Medicaid limit rather than losing everything and becoming dependent on the total system.”

It is important for the disability rights movement to start advocating for marriage equality so that all are able to marry if they want to and receive the healthcare benefits needed to live. Disability rights and LGBTQIA+ rights activists need to work together because this issue impacts queer people receiving benefits, whether they identify as disabled or not. As long as disabled people are at risk of losing benefits, full marriage equality does not exist in the United States. The fight for marriage equality for disabled and queer people is not over yet. I’ll end with Joni and Dominick’s own words on what it would mean for them to be able to marry:

“It would mean I’d be able to say to the world this is the person I’m committed to. And my partner would be able to be on my insurance and maybe get better health care than what Medicaid pays.” –Joni

“Everything. She deserves to celebrated for the almost 17 years of love she has given me, and I can’t even acknowledge we are together a lot of the time.” –Dominick

Head shot of Eryn Star
Eryn Star


  1. Totally unfair to all disabled people. We must fight back because some of our civil rights are being violated everyday that we have to choose between being married or surviving our lives.

  2. Bethany Mortimer says

    These laws need to be fair. What do you, the reader, think of when defining a persons quality of life. If you were to talk to a person whose lived a full life and ask them what was most valuable most would talk about their children and partner. Damning a person who already has been dealt a bad card by having a disability to spend a life alone sounds completely inhumane to me.

Speak Your Mind