While I’ve talked about this a bit previously, I want to dig a bit more into the idea of getting or staying married while on disability coverage.
The first and most basic thing that I want to emphasize is that this is a choice and that there’s no automatically right or wrong answer.
What there are, however, are considerations over the choice and the need to understand the costs and benefits surrounding this decision.
The healthcare issue
The US healthcare system is broken, and one of the few options available for disabled people is to be legally recognized as disabled, which can qualify us for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), depending on our personal employment history.
While each of these programs can give you extensions to your insurance if you work, most people who lose eligibility for other reasons will lose their health insurance coverage.
While other healthcare companies can no longer deny coverage due to preexisting conditions thanks to the Affordable Care Act, health insurance is often expensive and still can be cost-prohibitive, especially in terms of maintaining necessary medication.
This means that here in the US, anything that endangers our eligibility for Medicaid or Medicare without guaranteeing eligibility for similar coverage (including the financial cost) is putting our health at risk.
I decided a long time ago that I was unlikely to get married
I wasn’t one of those girls who imagined what her wedding was going to be like. It wasn’t something I ever gave much thought to. I enjoyed the wedding celebrations I attended, but never thought, “Mine needs to have X” or “Ooh, that’s how my wedding should be.” It very simply wasn’t something I thought about.
I remember in high school having to plan a wedding with a classmate and how very little I thought about much of anything involved in it. I wasn’t worried about what my dress would look like or what kinds of flowers I wanted, or anything like that.
I kind of just said to myself that when I found the partner I wanted, he and I would figure out how our wedding would go. But I just didn’t have a lot of emotional energy invested in the idea of a wedding.
I’m saying this because I know that there are many women out there who have fantisized about their wedding—who have pictured things, who have had plans or ideas for years and years about what their wedding was going to be like.
I’m not one of them, but I recognize that for others simply the idea of getting married has a lot of emotional weight to it.
I went onto SSDI when I was 24. I had just had the first relationship I’d really thought could lead to marriage fall apart, and while I was upset about the failure of that relationship, I wasn’t too focused on the marriage aspect.
With going onto SSDI, I accepted the practical thought that I likely shouldn’t/wouldn’t get married. At that time, I was covered by Medicaid and Medicare (dual-eligible), and I knew that getting married might cost me the Medicaid coverage.
I didn’t put much mental energy that way, though, because I was deeply depressed and struggling just to take care of myself.
I did manage to start thinking about dating again within a year or two, but I didn’t really enter a serious relationship for years.
Why my partner and I aren’t getting married
My current partner, Al, and I have been together for over 10 years now. He proposed 4 years ago, and I proudly wear my lovely engagement ring. It’s not traditional, but I love it!
We hope to have a commitment ceremony sometime in the next few years—a small ceremony and a big party to celebrate our love and commitment to one another.
However, we have no intention of getting legally married. We aren’t going to do that paperwork.
Because it is a financial and health risk for the both of us.
I’m on SSDI and Medicare. I let my Medicaid lapse years ago, and while I could argue my way back onto the Workability program, I decided not to.
I’m working on growing my business and hope that I can supplement my income and give us a better quality of life, with a dream of someday earning enough that I can decide to stop collecting SSDI altogether.
While SSDI doesn’t have asset limits and so is unaffected by whether or not Al and I get married, most disability support programs are asset- and resource-based social welfare programs.
Right now, I don’t need those supports.
However, part of how I get through any major medical expense is by doing it at the hospital and then applying for charity care.
I only need to provide them with my financial information because I am legally single—but if Al and I were married, or shared bank accounts, I would have a lot more paperwork to file for charity care, and I’d be less likely to get full support now.
Also, if I had a severe symptom shift and needed more help with the basics of life, Medicare doesn’t pay for home health aides, so I’d need to get back on Medicaid to get that help.
It’s much easier for me to get that support as a single woman than a married one—and a lot less paperwork to turn in.
My big concern now, however, is Al himself. I’m very proud of him for getting the job he has, and for being able to work as much as he does.
He now is insured through his employer and so far things are going well, he’s up to working four days a week now.
However, I’m very aware that he is dealing with chronic pain and an autoimmune condition.
While he is managing well now, and I hope that continues, he remains at risk for complications or future accidents.
Until he has a few more years of continuous work under his belt, he is ineligible for SSDI if he becomes unable to work, meaning that if something else goes wrong and keeps him from working, he may not have an option besides SSI.
Again, I hope that we never have to worry about it, but as a practical matter, if he is married to me, he is ineligible for SSI and getting onto Medicaid would be a struggle.
If we aren’t married, he’s easily eligible for Medicaid even if he just decreases his weekly work hours, and it wouldn’t be hard for him to prove financial eligibility for SSI if he was unable to work.
While we are living on a financial edge like this, I want to keep both of us safe, and we have more options if we just don’t get married. So that’s the plan.
The cost of not getting married
Getting married is something expected in our society. Even with a high rate of divorce, there’s still this assumption and expectation of marriage.
“When are you getting married?” is such a common question, and it’s expected and assumed that dating leads to marriage.
Our society assumes that two people who are together and intend to spend their lives together should get married. Our country is still battling for marriage equality so that people can marry the people they love, regardless of gender.
Al and I, as a male and female couple, are expected to marry.
We’ve had a lot of people assume we’re married, and refer to us as husband and wife.
We generally don’t bother correcting them because we have that degree of commitment to one another.
For us, the only big “loss” is that I don’t have the title of “Aunt” to his niece and nephew, and he doesn’t have the title of “Uncle” to my nieces and nephews.
In some families, there’s a strong value placed on marriage and weddings—and in some cultures, individuals aren’t expected to leave the family house until they get married, so marriage is that final step into full adulthood.
I know that for some families, not getting married is labelled as “living in sin” and children born out of wedlock are labelled as illegitimate.
Most of society considers marriage a positive, a sign of success, an expected milestone, and something that comes with many benefits.
Unfortunately, for too many disabled people, ableism and our current social structure has instead turned marriage into something many disabled folks are penalized for and a reason to strip us of benefits.
For people on SSI, individuals can have up to $2,000 in assets and have certain income limitations. However, if two people on SSI get married, they are only allowed to have $3,000 of assets (as opposed to the $4,000 they could have had individually).
The simple act of sharing a bank account can make a person on SSI ineligible due to these asset limitations, as the entirety of the bank account is considered for each person during their eligibility determination.
To make matters worse, SSI has a rule that people “living as married” are also subject to these rules, without a full explanation of the definition of “living as married” so folks on SSI have to worry and wonder what will happen if they are in a committed relationship, even if they don’t get a marriage license.
I really feel for the folks on SSI who are worried about the marriage penalty, as it has the potential to destroy their lives—since most people on SSI are struggling to survive on that small amount of income and are forced to stay low-income in order to continue to get that financial support.
Part of why I don’t marry is a sense of solidarity with other disabled folks who are living on SSI—we all should be able to marry who we love if we want to, and for many folks on SSI, that’s their only way to survive, so they are forced to be or appear single in order to keep their benefits.
I hate that we are forced in this direction—because too many disabled folks need home health aides or impossibly expensive medication in order to survive.
The expense of getting divorced
Another part of why Al and I aren’t getting married is simply because I never want us to have to contemplate getting divorced for healthcare/disability reasons. This isn’t an idle statement.
I remember working for the Division of Disability Services and a woman calling about how she was trying to get Medicaid. They held her as ineligible because her estranged husband was paying her $1,000 in support, and to be eligible for Medicaid, her unearned income needed to be under $973. The only advice they could give was to ask her ex to pay her $972/month so she could get Medicaid coverage.
Many people have had divorce suggested as the solution to their or their children’s health care issue. It’s an uncomfortable decision to have to make and one that can have a variety of negative ramifications for the couples and their families.
A friend’s mother is very slowly dying from complications from Multiple Sclerosis, and she and her father are discussing having him divorce her specifically so Medicaid becomes an option.
While her father has moved out and has a new partner, he’s uncomfortable with the idea of publically abandoning his wife through divorce even though she’s no longer capable of taking care of herself or even expressing herself. At this point, he’s paying for full-time caregiving for her and it’s draining the family of resources.
It seems to me that one of the best ways to avoid needing to divorce for these reasons is to not get married in the first place.
I know that right now, and in the immediate future, Al and I are doing all right. However, I also know that as I get older, the chance of additional health issues increases, and the overall stress to my body increases. This doesn’t guarantee that I’ll need extra help, but it does increase that possibility.
When Al and I first started dating, our only disability-related concern was my health. Since then, however, he has been through a Traumatic Brain /Injury (TBI), a shattered hip, and has been diagnosed with an autoimmune disorder. It seems somewhat common for people with an autoimmune condition to develop additional challenges, and osteoporosis is a progressive condition.
Al is already in pain and has weak bones. While there are many things he can do to slow the progression, he cannot reverse either challenge. He may not be able to work as long as he otherwise would have, and that’s a reality that we have accepted.
How our families have dealt with our decision not to marry
Our families understand why we aren’t married. My mother and I had discussed this when I went onto SSDI and how it was somewhat likely that I simply wasn’t going to be legally married to somebody, though I definitely could have a life partner.
When Al and I had been dating about a year and decided to move in together, we explained to his parents that because of how disability benefits worked, it wasn’t a good idea for us to get married. Al’s uncle lives on SSI, so they understood some of the challenges.
One of the main reasons we want to have a commitment ceremony is to give the kids a day where I become “Aunt Alison” and Al becomes “Uncle Alvaro.” We’d like to celebrate our love and have our families and friends intermingle.
We haven’t yet, mainly due to financial reasons—we’re hoping that with Al working now, we’ll be able to save up a bit and have a celebration when we’re not in the middle of a pandemic.
I feel so fortunate that our families are so loving and accepting. There’s never been a negative comment about us living together without being married, and both our families have accepted both of us as part of the family.
We’ve got that even though we don’t have a piece of paper or a specific date of commitment.
I know that for many others, this simply isn’t the case, and I am so grateful for what I do have.
Looking into the future
I can’t see getting legally married in my future at the moment.
Al and I have built a comfortable life for ourselves—we’ve adopted two cats and the four of us are happily cohabitating.
Al and I are both polyamorous, and while neither of us is in an additional relationship right now, that may change again in the future.
We are comfortable with the possibilities that brings, and in some sense not being married allows for the possibility of creating more egalitarian relationship options, like adding a third partner who feels like a completely equal partner.
However, the reality is that even if we were married, the same relationships could happen—and our degree of commitment to one another is unlikely to change.
I am building my business, and my focus at this point is just to make a few sales so that the site pays for itself with me possibly earning some additional income. I have no idea if this would become self-supporting in the long run.
Al is now working four days a week and is pretty used to it. We’re appreciating the extra income and I’m using this financial break to pay down my credit card, which got a bit of a workout over the past few years.
We’re happily committed to one another and a ceremony or piece of paper simply isn’t going to change that.
If our country adopts universal healthcare, then one of the big hurdles for the disabled community in terms of both marriage and employment will go down, which would be wonderful.
What I think would help the disabled community the most, though, would be if (after universal healthcare occurs) we shift to either a universal basic income or develop another financial support system that doesn’t have financial requirements tied in with disability supports.
As things stand, for disabled people to get any kind of help, we also need to be poor, and that just isn’t fair for anybody.
The disabled community is facing challenges that others don’t, and I’m not just talking about rampant ableism. We also have the very real limitations that our conditions cause, and earning income doesn’t remove those limitations (though it does give us more options on how to cope).
I would love to be part of a world where my marital status doesn’t threaten my ability to get the support I need to manage my condition.
We all deserve to be treated better, and the current “marriage penalty” doesn’t improve anybody’s quality of life, but instead punishes disabled folks and inter-abled couples for wanting to have the same privileges as the rest of society.
People on SSI shouldn’t lose their benefits because they want to publicly acknowledge their love for one another.