Imagine you are disabled, and you meet the love of your life. You then decide with great joy that you would like to spend the rest of your lives together. You get engaged, announce the good news, and begin to plan a wedding…only to find out that you cannot do that. And not only can you not get legally married, but it would also be a risk to “act” married in any way (“holding out”) without risking the loss of your disability benefits. The choice is simple: marriage versus quality of life. Or, marriage versus life itself. That is the cruel reality of marriage in the disabled community.
“BUT I KNOW A DISABLED PERSON WHO GOT MARRIED”
There is a huge public knowledge gap on this issue, even within the disabled community. The issue is not that marriage is banned outright for disabled people, but rather that, for many, marriage can trigger loss of health insurance benefits and care. Medicare and Medicaid typically cover far more health and support services than private health plans can, so if an individual takes certain high costs medications or needs certain treatments, procedures, or assistance, they may never be able to survive on a spouse’s plan.
CONFUSING & COMPLEX:
Any disabled person technically has the legal right to marry. But when significant and necessary benefits are lost by doing so, that doesn’t provide much of a choice for any but the most privileged. That’s why the rules on marriage in the disabled community are often referred to as “marriage penalties.” The “fine print” of disability rules as they apply to couples are complex and require their own article. But the detailed and restrictive rules surrounding income caps and assets limits not only amount to forced poverty, but also go into such minute detail that they feel almost intentionally cruel.
CONFUSING ON PURPOSE?
First, a few important acronyms:
SSDI = Social Security Disability Insurance pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.
SSI = Supplemental Security Income is a Federal income supplement program funded by general tax revenues (not Social Security taxes):
- It is designed to help aged, blind, and disabled people, who have little or no income; and
- It provides cash to meet basic needs for food, clothing, and shelter.
The inconsistency in marriage penalties also causes confusion for both abled and disabled people, since all of our situations are so different. Marriage penalties affect someone who receives SSDI on their parents’ work record versus someone who receives it on their own work record in different ways. The penalties can also affect someone on SSI very differently than someone on SSDI (SSDI on one’s own work record cannot be lost with marriage; SSI can).
The range of effects also varies. In some cases, marriage can result in a lower monthly check (if someone receives SSI monetary payments). In other cases, it can trigger loss of healthcare benefits/ insurance, which for many disabled people is far more damaging than loss of monthly income. Even disabled people who work, in many states, and have dual Medicare/ Medicaid health insurance plans, can lose that assistance by getting married. Medicaid also pays for attendant or home care for many disabled people that assists them in performing everyday tasks. Healthcare isn’t a “just in case” insurance policy for disabled people. It is a necessity to live.
The decision surrounding this is understandably gut-wrenching and unequal and feels inherently discriminatory. But is it?
This all goes back, essentially, to outdated policies created when the government advocated for forced sterilization as the “cure” for disabilities. During the eugenics movement in the first half on the twentieth century, tens of thousands of people with disabilities were forcibly sterilized or segregated (often in institutions). They were also prohibited from marrying by law in many states. And even though they are less overt, eugenic practices continue in principle today, and many of those old laws have never been officially repealed.
OUTDATED FINANCIAL MEASURES:
There are strict regulations on how much disabled people can earn and how much they can have available in assets. These limits have not been raised since 1984. Income limits and asset caps for SSI and SSDI are very strict. Assets (not counting a few select items and a house) are capped at $2,000 for an individual and $3,000 for a couple in which one or more parties receives SSI/ Medicaid. When a disabled person marries, the government “deems” a portion of the spouse’s income to be theirs, which commonly results in a loss of benefits, monetary or healthcare-related.There are strict regulations on how much disabled people can earn and how much they can have available in assets. These limits have not been raised since 1984. Click To Tweet
WHAT IS “HOLDING OUT:”
I’ve mentioned the term “holding out.” What that essentially amounts to is that, even if a disabled person and their partner are not legally married, if “evidence” (according to the SSA website) exists to the contrary, the couple and their friends and family can be interviewed to determine if they are essentially “acting” like they are married. If it is determined that they are, the disabled person stands to lose any or all health benefits from the government
SSA employees are also instructed to obtain physical evidence if holding-out is suspected. It seems impossible to miss the draconian nature of these allowable invasions into disabled people’s private lives.
Legal advice surrounding this subject is clear in its intent to protect disabled individuals. Neighborhood Legal Services of Erie County, New York, offers the advice that ‘Unmarried couples who do not want their SSI to be reduced should do everything they can to appear not married” [emphasis mine].
NO FINANCIAL SENSE:
Another confusing issue surrounding marriage in the disability community is that the marriage penalty itself, and supposed savings to the taxpayer, is easily avoided, but also easily triggered if people don’t know about it or get bad advice about it. In a sense, the government hopes to save money by disabled people accidentally triggering benefit reductions. Since most disabled people simply respond to these rules by not marrying, the “savings” from continued marriage penalties are never fully realized. Recipients get full benefits by not marrying and would get the same full benefits by marrying were there no penalties. The only savings lost is from people who have benefits cut because they didn’t know that it would happen. Discouraging disabled people from marrying (or even incentivizing them to divorce) may not be the intent of Social Security rules, but it is certainly the practical effect.
In the United States (and some other countries), disabled people do not have marriage equality. At least not all of us. This isn’t because it is strictly forbidden by law, as same-sex marriage was until 2015, but because of the very real risk we face of losing government assistance that is necessary to our very survival in so many cases.
Healthcare is very expensive for some disabled folks, whether that be from medications, doctors’ appointments, surgeries, attendant care, and more. A disabled person being added to a spouse’s healthcare plan does not make up the difference.
The result: disabled people having to stay single (often doing “everything they can,” as advised by legal representatives) to avoid being seen as married.
WHAT YOU CAN DO:
Write letters to your senators and representatives letting them know that this is an issue that needs attention now!
Tell the story of your disability discrimination on https://patientsrisingstories.org/
Find your legislators at: https://openstates.org/find_your_legislator/
Find disability advocates who are trying to bring awareness to this issue and spread the word.
Advocate for bills and policies to change the law.
Tell everyone you know about this issue. This penalty can only change if we all work together.
Follow the hashtag #CantMarryMyLove on Twitter, created by Imani Barbarin (@Imani_Barbarin) of “Crutches&Spice.”
Kaitlin A. Kerr is a disabled artist and advocate. She holds degrees in English Literature, Nursing, and Nursing leadership (MSN). She had to leave that profession after her disorders progressed. Kaitlin lives with Ehlers-Danlos Syndrome, Rheumatoid Arthritis, Crohn’s Disease, pudendal neuralgia, Interstitial Cystitis, endometriosis, Mast Cell Activation Syndrome, and dysautonomia, and more. On better days, Kaitlin focuses on running a Shakespearean theatre company. She is also a published poet, actor, and model. Kaitlin also volunteers for PAAR (Pittsburgh Action Against Rape) as a sexual assault counselor. She is training to be an intimacy director for theatre. Much of her artistic work grows out of the reality of living with a rare chronic pain disorder and finding true meaning in art, beauty, and connection with others.