Marriage Equality for Disabled Adults: AMM talks to DREDF about the Best Ways to Get Involved

Did you know that many disabled people risk losing their medical insurance and income if they get married?

 

The Disability Rights Education and Defense Fund and lawmakers hope to change that… But they need your help! 

 

 

In just a couple weeks, legislators will introduce a bill that could help establish marriage equality for millions of disabled and elderly Americans who receive social security benefits. But they need your help to pass it into law.

 

Currently, these adults are forced to choose between marriage and the SSI benefits they rely on to lead full and healthy lives. They risk losing some or all of their monthly SSI income and medical coverage when they wed, due to ‘marriage penalties’ that are written into social security law. As it stands, many disabled folk are stripped of their benefits when they get married. 

 

This is a matter of social, financial, and constitutional rights. For many people, marriage is a sacred religious covenant that shouldn’t be denied or complicated by their health status. And the right to marry is constitutionally protected; disabled adults shouldn’t face financial or physical hardship for choosing to marry.

 

Press Release: Disabled Woman Seeks Marriage Equality From Social Security Administration – Files Religious Freedom and Due Process Complaint

 

Photo: Jocelyne Jeannot

Participants dressed in beautiful wedding attire stand outside during the commitment ceremony and rally held in DC in September. The festive event featured a symbolic ceremony, dance party, and presentations by several disabled adults and disability advocates. 

 

Unfortunately, many people outside of the disability community have no idea these penalties exist, and are shocked to discover just how severe they can be. Imagine losing your income and health care, just because you get married to someone you love! 

 

Even worse, perhaps, the enforcement of these marriage penalties is so strict that disabled adults can sometimes lose their benefits for simply appearing to be married, such as owning a home with their significant other, moving in together, or holding a symbolic commitment ceremony with friends and family.

 

This added risk creates significant fear for SSI recipients, and discourages many couples from speaking out against discriminatory rules. 

 

• Learn more about the SSA’s ‘Holding Out’ rule

 

Disability advocates and legislators are raising awareness of the inequalities facing disabled and elderly SSI and SSDI recipients, and the topic has made major headlines recently. 

 

Just last month, for example, the Disability Rights Education and Defense Fund (DREDF) organized a large rally at The National Mall in Washington, DC. The event took months to prepare, and received an outpouring of community support, including shout-outs from The Arc. Participants arrived from all over the country to join in a symbolic commitment ceremony and dance party, and to watch presentations by prominent disability advocates and speakers.

 

Which brings us back to this upcoming legislation, and why it’s so important for you to get involved. A similar measure was introduced last year, but failed to pass before the session ended. The stakes are even higher this year, with nearly 7.6 million people in the US receiving SSI benefits, and more adults qualifying each year. 

 

More action is needed! That’s where you come in. 

 

 

AMM spoke with representatives from DREDF recently, Staff Attorney Ayesha Elaine Lewis and Communications Director Tina Pinedo, to learn more about the upcoming legislation, and how our community can get involved – and stay involved – in this important work. 

 

Here’s what they told us! 

Photo: Jocelyne Jeannot

Guests watch and listen as presenters speak on stage during the recent rally in DC this September. The symbolic event was held on a sunny day on The National Mall, within view of the White House. 

 

 

Interview Date: September 18th, 2023

 

In July, Congressman Panetta announced he would reintroduce the Marriage Equality for Disabled Adults Act. What’s happening with that legislation now? 

 

“We were hoping to reintroduce the bill in July for disability pride month, [but] unfortunately, it ended up not being possible to get the introduction. We’re trying to get [it] out asap, so that folks can follow the bill, and help with [our] efforts… We hope that will be within the next month.”

 

 

How can people get involved, support the bill, and spread the word? 

 

“There are a lot of things that folks can do to get the word out. 

 

For example, we’re going to do a congressional briefing on the issue. And one thing that’s really powerful, to help legislators understand the scope and importance of this issue, is to hear personal stories from constituents and people impacted. 

 

DREDF has been collecting stories [from] people who are directly impacted, or friends and family of people directly impacted, by these marriage penalties. We know that there are people impacted in every single congressional district of this country. If we can get people from each district to speak to this issue, that’s something that legislators will pay attention to and care about, and help them understand just how important this issue is.”

 

 

Share a personal story with DREDF
* DREDF will keep your story confidential 

 

• Share your Story About Social Security Administration Disability Marriage Penalties

 

 

“Another thing that folks can do in addition to sharing their story is amplifying the issue… We have fact sheets, we have a really detailed annotated bibliography, presentations and scholarly articles… to help people learn and get educated on this issue. 

 

Unfortunately a lot of people don’t know, still, that people with disabilities are facing barriers to marriage.”

 

 

Get educated & amplify the issue! 

 

• Marriage Equality Annotated Bibliography
• What is SSI? Supplemental Security Income (SSI) and the “Spousal Deeming” Marriage Penalty

 

“Once people have more understanding of the issue, they can speak to it when they’re reaching out to the legislators or also promoting the issue. …They can contact their representative, [and] tell them how important it is for the bill to be passed. 

 

And also, send in letters of support… Congresspeople really take those [letters] seriously. Especially if it’s something that you’ve written out personally, not a form letter, but just like a personal note. The fact that someone cared enough about an issue to sit down and write a letter or to call, is something that they take note of.”

 

 

Contact your representatives! 
Call or write a personal letter

 

• How to Find Your Representative
• How to Contact Your Senator

 

 

“Another thing that people can do to support marriage equality is to follow DREDF on social media. If people follow us they can stay up to date with what’s going on.”

 

 

Follow DREDF on Social Media & Online

 

• Facebook
• X (Twitter)
• DREDF Newsletter
• DREDF Blog

Follow DREDF on Facebook to learn about current events, and important issues impacting the disability community

 

Can being in a long term relationship threaten SSI benefits, even if a couple isn’t legally married? 

 

“Yes. So, SSI has a lot of different rules, and one of the rules is called the ‘holding out’ rule. So, it’s in the law, and it says that if the Social Security Administration decides that someone is ‘holding themselves out’ as a married couple, then [the] Social Security Administration needs to treat them as a married couple. 

 

And so, what [holding yourself out as married] means is…you’re presenting yourself to the public as if you’re married. So, referring to someone as your partner or life partner, that could be considered holding yourself out. Posting on social media, using their last name socially, even if not legally, wearing rings, or having an open commitment ceremony, all of those things – buying a house together…

 

And it makes a lot of people afraid to tell their stories, and be public about their life.”

 

• Learn more about the SSA’s ‘Holding Out’ rule

 

That’s so terrible. Can people share their stories with DREDF anonymously? 

 

“Yes. If people do share their stories, it’s a simple form…we’ll ask them if they’d like to have a conversation to talk more about their story, and we keep these stories confidential. If we share it with media, or legislators, or policy makers, it’s only with permission. 

 

So if they say, ‘this is my story, you can share it, but only anonymously, you can’t say the town I’m from, or don’t say my name,’ that’s fine. And we take that seriously, because we know a lot of people are afraid of Social Security Administration finding out and causing problems for them.”

 

 

Share a personal story with DREDF
* DREDF will keep your story confidential 

 

• Share your Story About Social Security Administration Disability Marriage Penalties

 

What's essential for people to know about this issue? 

 

“...This is an issue of people being free to love. It’s an issue of religious freedom for many people, they have religious beliefs around marriage… 

 

And for many people, like Lori, [Lori Long] our client… marriage is a sacrament. It’s not just about [the] social and romantic and family aspects of marriage, although those are important. It’s also an issue of …religious practice and religious freedom.”

 

Read DREDF’s official complaint filed with the SSA:

 

• Administrative Complaint and Request for Relief Under the Religious Freedom Restoration Act (RFRA) and the U.S. Constitution

 

 

Photo: DREDF

Several guests exchanged colorful Ring Pops during the symbolic commitment ceremony while advocating for the right to marry whoever they choose, without losing their SSI benefits. 

 

 

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Read Next: 

 

 

• It’s Time to Eliminate the Marriage Penalty for Disabled Adults
   
• How to plan an accessible and disability-friendly wedding ceremony
   
• How Wedding Officiants Can Work Best with Autistic Couples
   

 

Asked to officiate a wedding for an Autistic friend or family member? Planning a wedding ceremony for an Autistic couple for the first time? Here's what to know!
 

 

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