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A Simple Fix For One Of Disabled People’s Most Persistent, Pointless Injustices

Andrew Pulrang

Lori Long and Dominick Evans each have different disabilities. They live thousands of miles apart and face different everyday challenges, Both have talents, dreams, and hopes for the future. Both they each rely heavily on some combination of Social Security benefits, Medicaid, and Medicare for their very survival and ability to function.

Both Lori and Dominick also have people in their lives they love and want to marry, people who want to marry them. But both are for all practical purposes prevented from marrying because of their disabilities and obscure rules of the programs they depend on. And both have fought and continued to fight to make people aware of these barriers and get them eliminated. It’s an election year, which is a good time for candidates to listen, and respond with positive, straightforward proposals to fix this problem, which affects thousands of disabled Americans.

When you hear the phrase “marriage equality,” you probably think of the movement that culminated in a Supreme Court ruling in 2015 that made marriage legal for same-sex couples throughout the United States. But there is a somewhat similar movement still going on, though comparatively less known. It’s the effort to change longstanding Social Security rules that penalize disabled people who marry.

There is an important difference between these two movements, and the barriers they target. With same-sex marriage, the obstacle was fundamental. In most U.S. states, it was entirely against the law for same sex couple to marry. It was illegal. For disabled people, the barrier isn’t strictly speaking legal, at least not in this straightforward a way. Any disabled people has the legal right to marry. But for many there is a financial barrier — a major loss of benefits simply for getting married. That’s why the issue is often referred to as “marriage penalties.” You can get married, but if you rely on benefits for incomes support or health coverage, you’ll pay a price. And for many disabled people, the price is steep — much too steep to simply shrug off for the sake of love.

What are “marriage penalties” and how do they affect people with disabilities on Social Security?

The term “marriage penalties” refers to a bundle of Social Security rules that trigger reductions or complete loss of benefits for otherwise eligible disabled people when they marry. In some cases it can result in a lower monthly check. In other cases, it can trigger loss of benefits entirely. And loss of Social Security benefits almost always results in loss of health insurance too, which for many disabled people is far more damaging than loss of monthly income. Medicare and Medicaid typically cover far more health care and support services than any private health plan. And crucially, Medicaid is virtually the only health insurance that pays for long term home care, which disabled people like Dominick rely on for assistance with everyday self-care tasks, like getting out bed, bathing, dressing, and eating. For someone like Lori, whose disability changes over time, steady and flexible medical coverage is equally essential.

For most disabled people, especially those whose impairments are significant enough to qualify for Social Security, health care isn’t a “just in case” insurance policy. It is a lifeline and the foundation for building a safe, satisfying, and fulfilling life.

There is a nominally logical rationale for reducing income and health care benefits for some disabled people when they marry. A disabled person on their own may need full benefits to survive. But if they marry, then their spouse can be relied upon to help support them, financially and logistically. So the disabled person who marries needs less financial support. There is also a more general assumption two people sharing a household can live the same lifestyle for less money than they can apart. Or so the reasoning goes.

But on another level, marriage penalties don’t stand up to broader, modern financial or moral scrutiny.

For one thing, marriage penalties are inconsistent. They affect some disabled people and not others. And those it does affect it impacts differently based on differences that most observers would say are pretty insignificant. Explaining each rule and formula for each situation would require a full article on its own, but in general, how marriage penalties play out for any particular disabled person on Social Security depends on several factors:

• Whether they are on Supplemental Security Income, (SSI) or Social Security Disability, (SSDI), or both. The key to SSI eligibility is income and savings. For SSDI it’s the disabled person’s work record, or the work record of a parent or spouse.

• If they are on SSDI, it makes a difference whether it is from your own work, or based on parent or spouse. For instance, Lori’s SSDI derives from her deceased father, which would trigger a loss of benefits if she marries. If she had her own SSDI, there wouldn’t be a marriage penalty. And SSI has its own rules involving benefits amounts and savings.

• It also makes a difference whether the person the disabled person wants to marry is also disabled and on SSI or SSDI.

As disability scholar Ari Ne’eman recently noted in a New York Times article on how benefits are confusing by design, the sheer complexity of these different rules are, like most disability benefits rules, “Kafkaesque.” Intentionally or not, they further penalize people who have less access to accurate information, and less ability to strategically plan out their finances and legal arrangements. Because obviously, if you know about these penalties ahead of time, you can avoid them by “simply” not getting married. It’s a terrible position, and a gut-wrenching decision as anyone who is married or has wanted to marry well knows. But the penalty itself, and the supposed savings to the taxpayer, is easily avoided. But it’s also easily triggered if the people involved don’t know about it, or if they get bad advice about it. In a sense, the government hopes in part to save money by disabled people accidentally triggering these benefits reductions.

The whole business around Social Security benefits and marriage is shady, and feels inherently discriminatory. It also violates some of the most basic and cherished norms of American society.

Another Times article from 2016 quotes Philip Cohen, a sociologist at the University of Maryland-College Park, who notes, “The overall first-marriage rate in the United States for people ages 18 to 49 is 48.9 per 1,000. For people with disabilities it’s just 24.4.” While marriage is far from the only path to happiness, it is something most adults at least aspire to on some level. And for those who are lucky enough to find someone they love, marriage offers enormous benefits that go far beyond financial or practical conveniences. Disabled people in particular both struggle more than others to find this kind of companionship, and benefit from it in ways that can never be quantified.

Do we really want to discourage disabled people from marrying, or punish them financially for doing so?

These penalizing benefits rules that specifically target disabled people also reflect outdated ideas of marriage itself.

Marriage is no longer quite the one-way caretaking situation it once was. Today we generally view married couples as equal and independent people, who undertake a limited financial partnership, but also try to preserve a healthy degree of independence. The idea that by marrying, a disabled person transfers in some way the responsibility for their care from the government to a spouse is grossly outdated, in terms of both gender roles and a modern understanding of disability.

It doesn’t make much financial sense either. The efficiencies achieved by living as a couple with pooled resources can be quickly wiped out by the high cost of living with disabilities. Disability is expensive, and even those couples with more traditional financial relationships, with one caring for the other, need all the financial leeway they can get.

Most importantly, almost nothing about single vs. couple finances can make up for a disabled person losing eligibility for Medicare or Medicaid. Even with Obamacare’s protections for pre-existing conditions, private health insurance simply can’t cover some key disability-related expenses the way Medicare and especially Medicaid can. And even with a working spouse, having strong health insurance that thoroughly covers both is far from guaranteed.

Finally, although marriage penalties do not make marriage illegal for disabled people, as marriage for same-sex couples once was, for disabled people in love it feels and functions like an official disapproval and practical impediment to marriage — specifically and solely for them. It feels and functions like a violation of basic human rights, based on disability. 

The simplest, most comprehensive way to undo this injustice would be to make marriage entirely irrelevant in all cases, and judge eligibility and amounts solely on each individual’s situation, whether married or not. What would this cost? It’s hard to know for sure.

A 2003 study by the Social Security Administration offered some possible changes to reduce or eliminate the widely criticized “disincentives” and confusion in eligibility and rate rules for married couples and those living together. It offered some dollar amount estimates, but they weren’t very definitive. And by now, 17 years later, they are probably out of date. It may be worth noting that even the seemingly simple option of simply treating all recipients as individuals, regardless of marital status or cohabitation, may produce unintended consequences. Reform legislation must be crafted with care. But at least these complications would be mostly in favor of recipients with disabilities.

But since most disabled people simply respond to these rules by not marrying, the “savings” derived from continued marriage penalties are never fully realized anyway. Recipients get full benefits by not marrying. They would get the same full benefits by marrying if we eliminated the penalties. The only savings we would lose is from the people who have their benefits cut because they didn’t understand that it would happen. It’s taking advantage of these programs’ complexity, and disabled people’s lack of information and competent legal guidance. It is a morally ambiguous situation at best.

Dominick has struggled for a long time to bring the issue to people’s attention. In a 2016 blog post, he encapsulates the choice this issue forces on disabled people:

“When people with disabilities have to choose between their basic necessities and marriage ... we have no choice but to choose to live and to function, which means being unable to marry the people we love.”

But while most of the disability advocacy community knows about marriage penalties and wants to see them eliminated, fairly little progress has been made so far.

Meanwhile, Lori is working towards legislation that would specifically address her situation and other like hers who are disabled and on SSDI through a parent’s work record, with a campaign for a ‘Lori’s Law’ to address marriage penalties.

“When something cuts you to the core … not doing something about it feels more unbearable than accepting the status quo.”

Discouraging disabled people from marrying, or worse, incentivizing them to divorce may not be the intent of Social Security rules, but it is certainly the practical effect. As 2020 candidates and lawmakers think about disability policy and appealing to disabled voters, ending the marriage penalties should be high on the list of priorities. It may not be the most crucial disability issue, or one that affects the most disabled people. But few disability issues have such a strong moral and instinctual case for reform.

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I am a freelance writer with lifelong disabilities and 22 years experience as a service provider and executive in nonprofit disability services and advocacy. I write

I am a freelance writer with lifelong disabilities and 22 years experience as a service provider and executive in nonprofit disability services and advocacy. I write about disability practices, policy, politics and culture. I also co-coordinate #CripTheVote, a Twitter-based discussion of disability issues and electoral politics. I have a B.A. in history from Dartmouth College, and an M.A. in Rhetoric and Communication Studies from the University of Virginia.