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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.

  3. Hasan Al-mosawy says

    Hasan Al-mosawy is a disable person living in Baghdad iraq. He have a learning disability. He is looking for a disable person to get married and to live like every body normal and happy live . He is my brother and I am looking for a wife for him. Can any one help if they know a women to marry him.
    He is 47 years old very strong and handsome.
    Please e mail me.

  4. We are disabled we have the right to be married
    And were the same as everyone else
    Life isn’t fair and we are humans who has love
    And the government controls our money and us
    They take our right away and there wrong they need to understand what like to be in our shoes

    The money we have should be private matter the
    Law is wrong they need to treat everyone same

  5. We are disabled we have the right to be married
    And were the same as everyone else
    Life isn’t fair and we are humans who has love
    And the government controls our money and us
    They take our right away and there wrong they need to understand what like to be in our shoes
    And they need to put us a side or ignore us
    We have freedom of speech and right
    The money we have should be private matter the
    Law is wrong they need to treat everyone same

  6. I’m Angela Woollen from small town Indiana
    The law should be the same as every one else
    Laws need to be changed so we can get married as like everyone else our life should be treated fairly and the government need to treat us like you guys we have freedom of speech to hear us out to the rules of the law of handicapped people my god people are self centered and rude they treat unfairly and the world needs to be as whole we are split up in different groups we are all the same freakin people

  7. Asia Taylor says

    My Husband and I are both permanently disabled. We have 5 children we are given between us 1,345 a month to take care of all 7 of us. My husband is in dialysis 3 times a week and needs constant ccare I also require daily care. How are we to get ahead let alone survive in a system designed for some one 65, retired, with no dependents? I recently had a meeting with social seci8 to see if my children qualif8 for benefits. They if my husband I were to divorce they would be able to help us all! How does splitting up a family help!? My bills are behind, My kids need clothes and have medical appointments we cant get too because my aides can’t transport them It’s so many flaws in this system I feel trapped in poverty and completely stagnant. When I feel like with the proper support we could be working and helping our family flourish. But What are we to do when we are viewed as just another case. Not a family in need.

  8. Andrew J Wees says

    Another group who are not allowed to marry are Disabled Adult Children unless they marry another Disabled Adult Child

  9. Norma Griffin says

    My fiancée has been in a nursing home by his sister which is does not physically need to be there I live alone on a icwp volcher we been wanting for way over 10 yrs 2 be married but his sister his wants check that check that selfish keep. This is extremely frustrating n depressing we just want to be like everyone n live normal lives but the system is not working properly in our favor the government needs 2 changev it shouldn’t penilize for something that is how we raised

  10. yes why cant we get protest about disabled married penalty in DC it s not my fault my jerk hubby left me even other disabled women feel the same thing .. we must take action because our living expense is skyrocketing and how we disabled divorced married survivor . SSI is not great income … so i want to start protest from there !! it is has been too long and annoyed it.. if anybody agree then let s set up date in DC ~ Michele Mulligan

  11. This is totally not right at all, disabled folks are also normal people too! People with disabilities should not be forced to between marriage and survival, they should always be able to marry whoever they want to marry without being penalized! Stop controlling others and let them decide for themselves!

  12. Andrew Wees says

    It’s so stupid your born disabled and you get benefits off your deceased parent, but want to marry your highschool sweet who is not disabled you will loose Medicare and Medicaid.

  13. Patricia M Belalcazar says

    My name is Patricia I’m 33 now and never new about this site marriage penalty law and brake my heart because I was born with cerebral palsy and one of my dreams was to have family of my own and a full life. now In my opinion we need a bill passed that’ allows people with disabilities the rights to get married and keep their checks there should not be a marriage penalty law whatsoever please take the time and pray this

  14. Roger Lambert says

    This whole legal marriage/domestic partnership thing is just a scam that the State came up with, just so they can tax committed relationships. You don’t need some scrap of paper, or have any kind of government or religious approval in order to live together, sleep together, make love, raise a family, and grow old together. I believe in spiritual marriage, not legal marriage. The couple’s vows of commitment is what really forms the marriage bond, not some scrap of paper from City Hall. So when you and your significant other are ready to get married, don’t get a license, and don’t change your name. Just gather your friends together, exchange your vows, then live happily ever after. You need a marriage license from the State, like you need a hole in the head. This way you can get married spiritually, not legally.

    • Please look up “holding out” on SSA’s website. The Social Security Act requires that “if a “man and a woman” (their language, not mine) are found to be “holding out”—that is, presenting themselves to the community as husband and wife—they should be considered married for the purposes of the SSI program.” This applies to any kind of Medicaid.

      “An example of such a relationship is one in which the couple are not legally married but *consider themselves* as being in a common-law marriage. If a member of the couple denies holding out but *evidence exists* to the contrary, both individuals must complete a questionnaire gathering information about bills, mail, and housing arrangements. Concerns by advocates (as far back as the 1990s) about this procedure being administratively burdensome and infringing on personal privacy have resulted in recommendations to eliminate the concept of “holding out” and to only treat individuals who are legally married as spouses. But that hasn’t happened yet.

      But it gets worse! Because even if you and your family and friends all swear that you are not married, the government can still decide that the reason you are not legally married is because you are trying to game the system in some way.

      Some representatives coach their clients not to give the appearance that they are living as husband and wife. And Neighborhood Legal Services of Erie County, New York, offers the following advice: “Unmarried couples who do not want their SSI to be reduced *should do everything they can to appear not married.”*

      Here’s where it gets extra draconian: The SSA can (and is encouraged to) interview the disabled person’s friends, family, and neighbors. They can ask: How long have you known them (the disabled person)? How often and on what occasions did you meet? Are they known as a married couple? Do YOU consider them a married couple? Did you hear them refer to each other as a spouse? Do they or did they live together (and where and when)? 
      1. Form SSA-753 (03-2018) UF / OMB No. 0960-0017
      2. This form is signed, and sworn and attested to under penalty of perjury.

      The SSA can also legally interview you about your relationship to a person with whom you are living. They can ask such questions as: When did you begin living together? Where have you lived together? What did you say to each other about living together? Did you have an understanding about how long you would live together? By what names are you known? Have you had any of the following together: tax returns, deeds, contracts, insurance policies, bank accounts? Do you have any joint business dealing? Do you have any children together? How do you introduce each other to people? How is mail addressed to you? 
      1. They also ask you to list the names of your employers, friends, and family who knew of your relationship.
      2. They can also ask if you married anyone else in the past. Or worse, if you ever married each other (the implication being, they want to know if you got divorced to avoid the marriage penalty).
      3. Form SSA-754 F5 (12-2019) UF / OMB No. 0960-0038
      1. Statement of Marital Relationship (
      4. This form is signed, and sworn and attested to under penalty of perjury.

      They can even ask if you were ever engaged: “Was there an agreement or a promise that a ceremonial marriage would also be performed in the future?” And if so, why did it not occur? Here, they are trying to ask if you got engaged, but then ended the engagement to avoid the marriage penalty.

      “How do they find all this?” you ask? Indications of possible “holding out” to the SSA are encouraged to be searched for, and they admit this on their own website! SSA employees are instructed that, “If one or more of the answers by either individual indicate the *possibility* of a holding out relationship, obtain as many of the following items of evidence…as possible…”
      * Mortgages, leases, property deeds, bank accounts, insurance policies, passports, tax returns, credit cards
      * Information from other government programs
      * Magazine or newspaper subscription labels, personal mail.
      * Statements from relatives, close friends, or neighbors.
      * References:

      Some argue that shared living expenses (and possibilities of shared health insurance policies) should be helpful enough for disabled individuals and their families to afford care with reasonable ease. For many shared living arrangements, there are economies of scale (individual costs are reduced by the collective sharing duties and responsibilities), like dormitories, assisted living, etc. The problem with justifying marriage penalties in that way is that it doesn’t work like that for disabled folks. Marital vows of allegiance are the only type of shared living arrangement that is taxed in this manner!

      Of course, other health plans are provided by most employers of abled spouses, or can be found on the open market. But these are rarely (almost never) even close to enough to make marriage an option for disabled individuals who rely on government assistance for healthcare needs (e.g. multiple costly medications, surgeries, and home care). In fact for home and community based services (HCBS), having Medicaid is the only way to obtain these services without nullifying the payment received from working, and/ or incurring incredibly significant cost…even if one has a steady, full time, middle- or even upper-class salary.