On the day we met, I knew that my boyfriend was the man I would spend my life with. As tried and cliched as the line is, I still feel that way nearly nine years later. We would love to be married and start a family, and would have taken that step years ago but, unfortunately, that’s not an option for us. Over the last century, we have legalized interracial and same-sex marriage, but there still exists a marriage penalty against persons with disabilities.
My partner is disabled and is the recipient of federal and state assistance. Were we to marry or present ourselves as married in our community, he would lose all benefits. Thus, I would take on responsibility for for his living, food, and medical expenses. The latter is the real challenge, given that individuals with disabilities typically have frequent medical appointments, special procedures, and numerous prescriptions with exorbitant co-pays. If we to marry, my partner’s medical expenses would bankrupt me within the year.
While his monthly benefits are nominal–$800 from SSDI, $100 in nutritional assistance, and bottom-tier medical insurance–he pays $1.10 per month for medications that would cost over $2,000 under private insurance. To fully replace the value of his benefits would cost me an additional $35,000 per year. And this doesn’t include vocational rehabilitation, a program which is supporting my partner in pursuing a new career. For us, marriage would mean forfeiting over $150,000 in tuition support. He would begin his career in his late-40s with student loans, nothing saved for retirement, and no guarantee of continued health (and thus no guarantee of the ability to repay the debt).
I want to help him. I would love to add him to my health insurance plan, set up a spousal retirement account, and support his day-to-day expenses. However, for us, as well as many others, marriage represents a significant financial risk.
In January of 2022, California Democratic Congressman Jimmy Panetta introduced H.R. 6405, The Marriage Equality for Disabled Adults Act, a bill that would eliminate a few of what are informally called “marriage penalties.” These are a cluster of Social Security, Medicaid, and Medicare rules that make getting married financially and medically impractical or impossible for many people with disabilities.
Depending on the specific income and healthcare programs involved, getting married can result in one or a combination of: reduced monthly benefits, loss of eligibility for benefits, and loss of Medicaid, Medicare, or both. While none of these regulations make marrying illegal for disabled people, they are strong disincentives, and for many disabled people make marriage impossible.
The current restrictions clash with values that are favored across the political spectrum — the universality of love, the stabilizing influence of family, and the right to enjoy these things especially by marginalized people who are still either formally or informally barred from them. In a world so focused on “equity,” a key group of people is being neglected.
I spent the first few years of our relationship vaguely aware of the disability “marriage penalties,” but still waiting on a proposal, convinced that I could support us both until he was able to work. When we finally sat down to run the number, I understood. I found contentment with the thought that if we could be married, we would be.
When individuals who are disabled fall in love, they must make the impossible choice between access to healthcare and formalizing their commitment to a romantic partner. At the end of the day, for most, the choice is made for them. Even if their significant other is able to cover the cost of lost benefits, most wouldn’t ask that because they don’t want to place that financial burden their loved one.
The safety net in place is threadbare and flimsy but, for the disabled, it is their sole means of survival.
The proposed bill is simplistic, and it will likely be many years before any changes are considered or enacted. A vast majority of the population will go through their lived complete unfazed by the bill. However, for those of us affected by disability marriage penalties, it offers a glimmer of hope. It presents as an opportunity for those with disabilities to have a family and additional financial support, while also maintaining a healthcare safety net.
Disability benefits are arranged in such a way as to keep recipients impoverished. For example, recipients of SSI/SSDI will have their benefits revoked if they have over $2,000. Each month, it’s an intricate dance of spending down benefits without going into the red. To have access to a medical safety net through the government and a financial safety net through a spouse, I believe, would help lift countless persons with disability out of poverty and into a position where they can better support themselves.
It’s our hope that within the next five to six years, my partner will be able to enter the workforce with a skill that will pay enough to cover his medical expenses and allow him to start saving for retirement. if all goes as planned, around our fifteen-year anniversary, we’ll be able to tie the knot and be legally recognized as husband and wife.
While I highly doubt we will personally reap any benefits from The Marriage Equality for Disabled Adults Act, I am glad to see the topic under review. A disabled person in love should not be forced to chose between access to healthcare and partaking in the celebration of marriage.