What does love have to do with disability insurance?

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Getting married could mean a loss of health coverage, income support, and other essential resources for millions of Americans.

For many in the queer community, the phrase ‘marriage equality’ is reminiscent of the difficult decades-long battle that culminated in a landmark Supreme Court ruling in 2015 that legalized same-sex marriage. throughout the United States. Yet a distinct struggle has arisen for vulnerable people living with physical and “invisible” disabilities (autism, mental health or developmental issues) dependent on disability benefits.

There is a segment of this population that is often dissuaded from cohabiting and marrying due to oppressive and unfair social security rules. Social security rules, frequently referred to as “marriage penalties”, mean a loss of disability benefits when a recipient of Supplementary Security Income (SSI) marries or cohabits with someone, whether another recipient or from a person not belonging to the SSI program. This issue of marriage transcends race, culture, age, sexual orientation or gender identity; the cuts mean fewer dollars to pay for food and basic necessities.

Approximately 26 percent (one in 4) of 259,393,206 adults in the United States have some type of disability, and there are 69,828,000 people in the United States who receive Social Security, Supplementary Security Income (SSI), or both (from summer 2021). Only 24% of SSI beneficiaries aged 18 or older (1.5 million) are married, compared to 57% of all adults in the United States. These numbers are not helped by the fact that there are unassailable barriers to marriage imposed by the Social Security Administration and its “marriage penalties”.

“Marriage equality has the power to change the cultural narrative of what the LGBTQ community should be like,” Jax Jacki Brown, writer, speaker, and disability and queer rights activist / educator told Gay City News based in Melbourne, Australia. “It means that we can aspire to the same things as other people – and subvert them. It’s an institution that has historically been very heteronormative and based on cis gender notions, so being able to challenge some of these ideas as LGBTIQA + people assert our relationships through marriage is an important cultural action.

People with disabilities as a whole have often been left out of conversations about marriage equality, according to Kris Guin, founder of Queerability, an LGBTQ + and justice for people with disabilities organization, and advisor to the Autism Society of America.

“While I am delighted that my non-disabled LGBTQ + siblings could get married, I often think about how more inclusive the outcome of the fight for marriage equality could have been if LGBTQ + and disabled communities worked in solidarity with them. with each other, especially considering that part of the disability community – the autistic community – has research that indicates it has higher rates of LGBTQ + people than the general population, ”said Guin at Gay City News.

The system is antagonistic, imposing strict limits on income and resources. A New York Times article published last year, written by contributor and disability expert Ari Ne’eman, called the rules on disability benefits “”kafkaesque. “This may be obvious because the US federal poverty guideline for a one-person household is $ 12,880. Yet dependents receive an unrounded annual income of only $ 9,530.12. The prospect of marriage then threatens the meager salary under the spurious pretext of saving taxpayer money.

“I think this is because people with disabilities are still generally seen as undesirable, both as opportunities to do a pash on a Saturday night and as long-term partners,” Brown said, making it visible that disability care issues are significant beyond the United States. “When I moved in with my partner, my payment was drastically reduced, making me financially dependent on her. This financial dependence is worrying. While my relationship has been great for the past seven years, for others this inequality can lead to financial abuse and entrench ableism in a relationship.

The sanction can affect people with a wide variety of disabilities, but not all people with disabilities. There are disparities in marriage sanctions, as only certain people with specific disabilities are affected, while others are not. Considerations for the penalty include type of disability, work record, work income, savings, or whether the other is on the SSI or SSDI.

Aside from the devastating loss of income and imperative health insurance, many also lose access to equally essential support services, such as section 8, food stamps, social assistance and providers. Personal Care Assistant (PCA) which offers crucial help for self-care. tasks such as dressing, cooking or cleaning. For those with physical disabilities, loss of these benefits could result in death.

Jacob (name changed to protect privacy) and many like him depend on CPA care. At 17, on his way to his graduation party, Jacob’s car was hit by a cab on Lake Shore Drive in Chicago. He and his girlfriend were rushed to a nearby hospital, both in critical condition. Jacob survived, while his girlfriend, whom he intended to propose that night, died. Almost three decades later, he found love again with a wonderful woman named Renee (name changed to protect privacy), and they got engaged in October 2022.

“I suffered a head injury in 1996,” Jacob told Gay City News. “I broke my neck and the whole left side of my body was totally messed up. I was in a coma for three months, had three flatlines in a coma and they pronounced me dead. They tried to take me off life support, but my mom wouldn’t let them. When I returned from the hospital on August 6, 1996, I was a vegetable. I could speak a little, but I couldn’t move my hands or anything. I had a medical halo on my head … “

Jacob improved throughout this year and in February he was released from operative therapy. But he eventually suffered a second accident: he broke his neck when a drunk driver hit his car.

“I prayed over it and took pain relievers which lasted for about 20 minutes, but I was and am in excruciating pain,” he said. “And I need my ISS. Just because two become one when you get married doesn’t mean two can support one.

Renee, Jacob’s fiancee, who currently lives in separate accommodation and works as a paraprofessional in a special education class, added, “I went online to research ways for him to keep his benefits. He said if you get the SSID no matter how much your spouse earns, you will lose your benefits because they consider household income once you get married – even if you don’t earn much. When you get married, everyone should have something to contribute. No matter the size or size; it just matters that you contribute. Withdrawing this contribution is sad and humiliating.

There is an assumption that while a single disabled person needs all the benefits to survive when living alone, a person who marries another can safely share a home for less than if two people were separated. However, this is not necessarily true. Disabilities come at a high cost, and losing Medicaid or Medicare can completely destabilize a couple’s finances..

Flexible and consistent coverage is a human right and is essential for people with disabilities, especially those whose disabilities change over time. Knowing the penalties before marriage often means that many choose not to marry or to “marry well,” thereby shifting the responsibility for care from the government to the spouse. Also, those who marry before having understood the ill-conceived rules expose themselves to the sanctions mentioned above, mainly because they have a lower capacity to manage the legal arrangements and the finances. Such factors contribute to the overall rate of first marriages in the United States being much lower for people with disabilities than for their counterparts.

“My dream for SSI would be for it to be accessible to all people with disabilities, regardless of our employment status, income / assets or marital status,” Guin said. “Living with a disability is Dear, and many people with disabilities encounter what we call the Crip tax. Having SSI as a form of universal basic income for people with disabilities would have such an impact for so many people. I would also love to see the wait time significantly reduced as it can take months or even years to get your first SSI / SSDI payment.

Until improvements materialize, all dependents living with a disability can review their personal income, assets and resources, and calculate potential losses by contacting representatives of a local social security office. Many advocates should continue to pressure members of Congress to legislate and pass federal laws that impact the Social Security Administration.

About Antoine L. Cassell

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