disability and marriage rules

We are in the midst of wedding season.  Weddings are generally beautiful affairs where two people commit to one another, announce their love to the world, and celebrate their relationship with family and friends.  I attended two weddings this year, one for my cousin in Ohio, and another where a long-time friend of Al’s got married.  They both were beautiful and celebratory, and I had a great time.  Both weddings had a priest presiding over the ceremony and got a marriage license prior to the event.  Upon their wedding days, those licenses were signed by the correct representatives and they became legally connected, with guaranteed shared rights .

The financial cost of marriage on SSI

Most people who are or become disabled prior to marriage find that they cannot afford the costs of getting married.

I am not just, or even primarily, talking about the financial costs of a ceremony(which can vary dramatically and can be planned with budgetary considerations).

I am talking about financial benefits from the federal and state government.  Most social welfare programs, including SSI, are based on financial need.  As a single person, only your income and assets are considered in your application for these programs.

While SSI does provide some income to survive on, and SNAP benefits to help purchase food, the most important service they offer is Medicaid, which covers much, sometimes all, of the medical needs of a person with a disability.

Those costs are the primary concern for a person with a disability, and if they are married, their spouse’s income and assets are also considered, which can easily lead to ineligibility.

If both members of the couple are disabled, there are also ramifications – asset limits are for individuals or a couple. 

The amount of assets that a married couple is allowed to have and be eligible for SSI is $3,000.  Every single person can have up to $2000 in assets. 

Not only could one person lose their benefits, but both people can be denied for having the same exact amount of assets as they had prior to marriage.

If two people on SSI are not married, they can live together and each has access to just under $2,000 of assets and be fine.

However, the minute they are married, if their assets are over $3,000, they BOTH are no longer eligible for benefits.

They no longer get food stamps, they no longer get a monthly check, and, most importantly, they no longer have Medicaid to manage their healthcare.  So the only intelligent thing to do is to not get married.

The financial cost of marriage on SSDI

SSDI is based upon individual work history, and has fewer asset-related limitations.

If the only benefit you receive is SSDI, which provides Medicare coverage and a monthly check, marriage isn’t financially impossible, but access to any of the financially-based programs(pretty much all other social welfare programs) may be more challenging.

You will need to provide information about both your and your spouse’s assets for all future requests of any sort.

While some programs discuss household values(which would affect you and your partner from the moment you live together), sometimes only individual assets are considered for supports.

You can apply as an individual for supports on SSDI if you are unmarried, but if you are married your spouse’s assets are always considered.

Also, if for any reason your partner later needs assistance they will have their application process potentially impeded by your benefits and assets.

As I mentioned above, SSI and other programs will consider spousal assets. 

As an example, I know somebody who is on SSI benefits and is married to a person on SSDI.  Because they are married, she only remains eligible for SSI if they live separately and maintain separate households. 

If she wanted to live with him, she would lose her Medicaid coverage, but their marriage would not make her eligible for his Medicaid.

Laws on healthcare

If these programs only provided money, I would not be as concerned.

However, currently, the United States is in a health-care crisis.

SSDI provides Medicare coverage and SSI provides Medicaid coverage.  Often these are the only health care coverage we receive.

We only receive the coverage if we are currently receiving benefits.  So, if by getting married we lose benefits, we also lose our healthcare.

People with disabilities, by definition, are more apt to need health care than anybody else.  We have medications and medical care needed to maintain our quality of life, and in many cases, simply to stay alive.

If our spouses have health care, by marrying we are eligible to join their plan, but that often comes with increased financial costs and assumes the spouse has health care in the first place.  This also places those of us with disabilities in a place of dependency on our partners.

The right to theoretically use a spouse’s possible benefits is generally not as useful as having a source of health insurance that isn’t dependent on employment status.

Laws on medical decisions

Also, one of the rights that comes with a legally recognized marriage is legal recognition as next-of-kin to your spouse. 

This is extremely important in the case of severe injury(which may cause a disability), as it is the next-of-kin who often makes health-related decisions if the person who sustained the injury is unable to make their own medical decisions. 

Also, in the case of a chronic and worsening condition, there is also a high risk of the disabled person being unable to make some of the decisions in an emergency. 

When a person is unmarried, legally their next-of-kin tends to be their parents or children, unless otherwise specified in a living will or similar document.  This means that for a person with a disability, the decision not to marry can also have substantial ramifications, especially if the relationship between their partner and their family is challenging, or the family and disabled individual are in disagreement about the best course of treatment. 

This also deserves its own post(I promise to do it in the near future), but I do need to mention a large reason that the decision not to marry also has significant legal ramifications.

My situation

Al and I at another friend’s wedding

Al and I have elected not to get married, as while my SSDI benefits aren’t under extreme risk, we wanted to maintain my options for additional assistance if I needed it.

For some time, for example, I was supported by the NJ Workability program, which allowed me to have Medicaid benefits while employed. 

This cut down on my medical expenses, as Medicaid generally covers the remainder of medical costs(while Medicare covers 80%), and allowed me to be eligible for additional supports like a home health aide(which I did take advantage of at one point).

If Al and I had been married, getting on the workability program would have required jumping through additional hoops, and would have made Al’s work income a potential issue if he found a better paying job.

To protect him from fear of preventing me from getting all the support I needed, we elected not to get married.

Now, we are in a very different situation.  Al is unemployed, no longer eligible for unemployment benefits, and looking for work.

He isn’t sure what or how much work he can physically handle due to the constant pain he is in.  He has a spotty work history caused by events outside of his control, including the great recession in 2008 and a brain injury in 2012 that kept him unable to contemplate working for over a year. 

Due to this, he is ineligible for SSDI, which requires full-time employment for 5 of the previous 10 years (he has more than enough points to be eligible for retirement benefits).

His only recourse is to apply for SSI to help him through as he looks for opportunities and contemplates hip replacement surgery – which should help in the long-term, but will temporarily worsen his challenges.

If we were married, my benefits and assets would make his eligibility for SSI impossible.  As things stand, he was rejected based on asset calculations the first time around.

I am applying for SNAP and LIHEAP benefits for us while we wait, as my income is too high for me to be eligible for either program as a household of one but low enough for our household of two(which we are by virtue of living in the same apartment) to be eligible for those benefits.

Conclusion: Disability and marriage rules

Weddings are wonderful activities and ways to celebrate a couple’s love and commitment to one another.  For most people, the benefits of marriage outweigh the costs.

There are many government-sanctioned benefits and protections that people who are not disabled receive when their marriage is legally recognized. 

Same-sex couples have fought for these rights, and am I glad that currently those rights are protected.

For people with disabilities, however, the equations look very different.

Our lives and the quality of life we can enjoy is rooted in our ability to access health insurance.  When they are asset-based, like SSI is, the decision whether or not to marry is literally life-or-death.

There are people out there whose marriage has forced them to live separately in order for one of them to have SSI and loving couples who cannot have their love legally recognized due to fear of losing their benefits. 

With all of the discussion that has been coming up lately about marriage and marriage rights, I ask you to consider the ways in which people who are or become disabled are impacted by their marital status.

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11 Comments

  1. I can never understand why assessments are not individual based in most countries that I get to hear about. I also never understand why anyone should be put in a position where they’re forced to choose against getting married because they’ll lose government benefits.

    It’s all very sad and warped! Who puts these policies together that don’t make any sense?! I didn’t know it was like that but I’m glad I do now. It’s interesting to read your posts – I get to learn so much on how society tries to function in another part of the world.

    1. Shruti, thanks!
      The primary answer is, of course, Ableism. Historically the idea of disabled folks marrying (or worse, having children) was generally disapproved of if considered at all.
      Too often, we haven’t even been considered sexual beings.

      Part of marriage has always been implied ownership/responsibility, and so that has been encoded here. Basically, if he marries her, she’s now his responsibility. Yay patriarchy.
      If healthcare were universal, this would be much less of a problem.

  2. While you don’t have to have a marriage certificate to have a committed, lifetime relationship, it sucks that your ability to get the help you need to live detours you from getting married if you wanted to. I don’t fully understand the logic. The spouse (if not disabled also) needs to help out a bit extra generally to help their disabled spouse. Giving the disabled spouse the means to help in the support by having SSDI benefits only seems fair. Also, a person who is disabled already faces lose of independence through what they are living with, making them not have financial independence due to being married is really hurtful.

    1. SSDI benefits, like I have, aren’t fully limited based on marriage, but SSI benefits are. Not only that, but disabled people who marry each other while on SSI lose their benefits, because the asset limit for couples is $3000, and for singles is $2000. It’s really messed up.

  3. Ms. Hayes,

    I work for a center for accessible living in Louisville, Kentucky. I am working on putting a collection of stories of parents with disabilities into a book. One thing I wanted to include was an article on the Marriage Penalty for people with disabilities. I was wondering if I you would give me permission to reprint this story, or an updated version, in the book. I am hoping to publish in the spring. I look forward to hearing from you.

  4. Hi Alison, I am in a similar situation with my fiance. We have been engaged for five years but haven’t been able to get married due to me losing my SSID and medicaid benefits. Hoping the political climate will allow change so we can have marriage equality.

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