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When People With Disabilities Are Forced to Choose Between Love and Needed Benefits: Marriage Penalties

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This Valentine’s Day, as many as 6 million couples will choose to celebrate their love by becoming engaged. But for many people with IDD, this dream of marriage forces them to choose between love and necessary supports to live independently.

When Jen Met Eddie…

Jen and Eddie at an advocacy event.

Eddie and Jen first met while planning an Oregon self-advocacy event in 2006. They both noticed each other across a table and shared with friends that they thought the other was cute. Eventually, Eddie and Jen started getting lunch together and going out – and decided to become girlfriend and boyfriend.

At lunch one day, Eddie popped the question for the first time to Jen. She asked him to come to Christmas with her and ask for her parents’ permission. At Christmas, Eddie popped the question again. “I got on one knee and asked her hand in marriage. It was quite nice.”

Both Eddie and Jen are long-time professional self-advocates and knew of the Social Security and Supplemental Security Income (SSI) marriage penalties. The marriage penalties are punitive rules that cut benefits and limit savings for married couples who rely on critical Social Security SSI benefits.

While they wanted to get married, Eddie and Jen were terrified of what getting married would mean for their lives.

Jen, who has a spinal condition that requires 24-hour medical assistance, explains, “I would lose my Medicaid and have to pay out of pocket for medical needs, and I don’t earn enough to pay out-of-pocket for medications or other medical equipment.”

Eddie, who lives in an adult foster home, adds, “It would impact me significantly if I lost my benefits. I would have no money to live on…. I would have no place to live, [as the rental costs in my county are very high].”

In the end, Jen and Eddie decided not to pursue a legal marriage—and this has meant giving up dreams, big and small.

Both Eddie and Jen wanted to foster a child and become parents, and they believed that they would be great parents to a little boy or girl. However, without a legal marriage, this dream seemed far away. Now in their late 40s, they are not sure if it could ever happen.

And, while Eddie and Jen are committed to each other, not having a legal marriage means not having the legal backing to make medical decisions for each other if needed. According to Jen, “we’d like to [be able to] make medical decisions for our partner.” But, without the legal standing, Eddie and Jen may not be able to do this.

For the past several years, Eddie and Jen have been advocating to remove this unjust rule that no couple should have to deal with.

 “It’s an unfair [rule] that has been around forever. We should be able to [get married and not worry about our benefits], just like everyone else. People don’t understand that people with disabilities are just like everyone else. We pay taxes, we work, [and] we contribute to society.”

Jen and Eddie’s story is one of many. Married people with disabilities often experience penalties that force the couple to give up necessary benefits to marry. This may mean taking a pay cut, working less, or having to quit a job altogether.

No one should have to decide between being legally married and getting the support they need to live in the community.

Headshot of smiling woman with red hair in front of flowers and bushes

The Power of Belonging: A Community Comes Together

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By Rachel Baker

R. Baker

Our community of Midland, Michigan, is a community that works hard to create inclusive opportunities for everyone. This past January, The Arc of Midland received a grant to organize and execute our first MLK Day of Service project. With the help of over 175 volunteers, we packaged and delivered food to over 1,000 people on one of the coldest days of the year.

The 175+ volunteers braved the cold to help direct traffic and deliver food. One man, Tom, came to receive food and ended up volunteering the entire day!

“I had no intentions of staying to help, but once I saw everyone working together to help people like me, I had to stay and be a part of giving back to the community that was giving to me.”

The Arc of Midland is lucky to be widely supported by many businesses, clubs, and organizations in our community that pitched in on this effort. The Great Lakes Loons (a local Minor League Baseball team) played host to the chapter’s Day of Service event. Not only does the team provide a safe, accessible, and welcoming environment for everyone to enjoy, but they also employ many people with disabilities throughout the year.

Another crucial partner was Hidden Harvest. Since 2016, we have partnered together through a variety of programs and projects—including a free pantry stocked weekly and supporting the community together when a fire ravaged an apartment complex where many people with disabilities and seniors lived. During this year’s MLK Day event, they provided food assistance, transportation, volunteers, and logistics for packaging of the food.

The Arc of Midland’s MLK Day work brought thousands of people together in service to build a stronger community. Together, every partnering organization, volunteer, and person receiving assistance honored Martin Luther King Jr. and his vision of belonging. 

MLK blog image

A woman smiles in front of a storefront window, wearing a yellow shirt, turquoise necklace, and a ponytail

Perseverance in Planning: The Value of Building an Inclusive Volunteerism Program

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Building an inclusive volunteering community can be stressful, but it is often incredibly rewarding as well! This year, we asked Erica Delma from Holly Ridge Center to share her journey as a grantee of The Arc’s Martin Luther King, Jr. Day of Service project through a letter to herself. She spoke about finding meaningful work for her clients, the partnerships that blossomed because of volunteering, and the spirit of helping others that has lasted long after the events are over.

Dear 2018 Erica,

I know that the last few months since you applied for the MLK grant have been a roller coaster of emotions. As Development Director of Holly Ridge Center, you are responsible for attracting, growing, and stewarding resources to further the important work the Center does in our community. When the opportunity presented itself to apply for funding to develop inclusive volunteer programs, you thought it was a great match for the Center’s focus on inclusivity and finding people with autism meaningful places in the community. When you realized the focus would be on addressing food insecurity, an issue that you have been passionate about for years, you could not have imagined a better fit. And, one day you got the notice – you got the grant!

I want you know that you are joining a group of people and organizations throughout the country who are equally passionate. And, I want you to know that The Arc staff will be there to help you every day to be successful and navigate challenges.

You will get an opportunity to work with multiple community partners that will blossom into deeper relationships. You will add in even more partnerships with Meals on Wheels, the Kitsap Rescue Mission, and other service organizations.

On MLK Day, you will host a very successful volunteer fair at the Marvin Williams Center. Many people will tell you how eager they are to work with you in the future. The volunteers you support will have more opportunities in the community, and they will be eager and excited to do more and help others.

Thank you for your enthusiasm and energy for connecting the dots to promote inclusivity, volunteerism, the spirit of Dr. Martin Luther King Jr., and addressing food insecurity. There will be work nights and even longer days, but all your hard work will pay off!

Sincerely,
2019 Erica