Impact Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities

People with disabilities want to get married. We fall in love and want to make a commitment to the person that we love and become a family. For many it is a religious choice to get married. Yet, too many people with disabilities must choose between getting married and continuing to receive the benefits they need to live from federal programs such as Supplemental Security Income (SSI) and Medicaid. Too many have to struggle with this choice because of "marriage penalties."

The Problem

SSI is a needs-based federal program that helps people with disabilities (as well as people who are elderly) who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter. If two people receiving SSI get married, they will receive 25% less in benefits than they did as two individuals. The theory is that a couple can live on less income together than they would as individuals. In addition, even if a couple doesn't get legally married, they can be considered to be "holding out" if they are presenting themselves as a couple by SSI definition; for them, the same rules apply as for a married couple and they will have their benefits reduced. If only one person in the couple is receiving SSI, the benefit will still be reduced or they may no longer be eligible for it. In addition, there is also a resource limit; the amount of money you can have in the bank for an individual is $2,000 and for a couple it is only $3,000. Beyond these marriage-related SSI benefit and asset restrictions, eligibility for SSI in most states means eligibility for Medicaid. Medicaid covers services not covered by other health insurance plans such as a personal care aid, certain durable medical equipment, medications, and transportation to medical appointments. So anything affecting SSI eligibility may have a ripple effect. (For more information see Treatment of Married Couples in the SSI Program ; and Determining Whether a Marital Relationship Exists .

Obviously, loss of SSI or Medicaid benefits can be devastating, life changing, and even life threatening to a person with disabilities. And that is why there is a national movement to get this changed. I want to share with you how marriage penalties are affecting real people, and why we want them changed, by sharing the perspectives of two other self-advocates: Timothy and Kurtlyn. 

Timothy's Story

I was diagnosed with Duchenne Muscular Dystrophy at age three. At almost age 37 I am on a ventilator 24/7 and can only turn my head a little and move my fingers slightly. Having a pre-existing condition and high medical bills, the only way to receive the care I need is through Medicaid, and it is the same for many with permanent disabilities.

I had a girlfriend a few years ago and it didn't work out, but I wonder about the future if I meet someone again. Let's say I got married and our joint assets are more than $3,000. I would lose my Medicaid benefits. Then, with my nursing costs alone being more than $300,000 a year our assets would go below $3,000 in a matter of months as we spent them down, and I could go back on Medicaid. During this process my spouse would probably have to take a pay cut or quit her job altogether to ensure we keep our assets below $3,000. Think for a moment what we might then need. Off the top of my head I come up with housing assistance, food stamps, and Medicaid or Medical Assistance for my spouse and for any children. Without the Medicaid loss, my spouse would have probably taken care of all of the above and more instead of the government. People with disabilities on Medicaid who get married and cannot stay on Medicaid do save the Medicaid program some money, but they cost other government programs more.

The Medicaid Marriage Penalty is misdirected and wrong because it prevents many people with disabilities from getting married or even staying married. People with disabilities deserve to be able to get married to the one they love. Some believe the only way to be with the one they love is through marriage.

Kurtlyn's Story

I would like to see people who receive SSI or SSDI not be affected by their spouse's income. It is not anyone's fault that they're disabled, and therefore they should not be treated as such. Some disabilities have tremendous care involved, which can be financially straining. To lose the financial help of Social Security is just wrong.

I receive Social Security disability benefits due to my mental illness. Because of my mental illness, I am limited to part-time work. It is not my fault that I have my mental illness, and I have to struggle financially as it is because of not being able to work full time. If I were to get married, I would not want to be a financial burden on my husband because I lost my Social Security. It is hard enough now as it is with me supporting myself. And I don't want to have to be in the position where I have to choose between keeping my benefits or getting married.

People with disabilities should have the same rights as anyone else, and that should include marriage. People with disabilities fall in love, and have the same beliefs as those without disabilities when it comes to making the commitment to spend the rest of their lives with someone. Marriage is a very important thing to a lot of people, and I don't want to have to miss out on it just because of the risk of losing my benefits. I also don't want to have to lose someone in my life out of fear of me being a financial burden to them.

I would like to see people who receive Social Security in any form be able to keep their benefits if they get married. I cannot imagine losing my Social Security, which would then make me lose my insurance as a result. I have to go to counseling once a week, and there are times where I go twice. There are also times where I participate in groups (another service that is billed), or my doctor's visits; all these things add up as a financial responsibility that I don't want my spouse to have to take on just because I have an illness. I cannot afford to lose my insurance just because I lost my benefits for marrying someone. There have also been a few times where I had to take a leave of absence as a result of my symptoms increasing. I rely on my Social Security to fall back on when I am out of work. Please take into consideration the stress someone with disabilities has to go through to begin with to get through a day. And once again, having a disability is not someone's fault.

My Story

Nine years ago my mother said to me, "I want you to find someone, fall in love, be happy, and someday get married." I was aware of some of the problems with her request, including federal marriage penalties, and I felt: Why try? It's never going to happen so just give up.

But, today I am married to the most patient, wonderful, and understanding woman in the world. When I started to date my wife I had no idea I would marry her. I honestly figured that we would just date and that would be that. I am a self-advocacy coordinator who works with people with disabilities. I am also a trainer. My wife took part in training to get ready for a new job as a service coordinator and there was a problem with one of the trainers and their equipment. I happened to be there and Amber came up to try and help me figure it out. When we looked at each other we knew there was something between the two of us. We weren't sure what, so for the next three days of training we talked and had lunch every day. She thought that I wanted her to work for me as my service coordinator, but of course I had other designs for our relationship. There came a time where I was e-mailing, calling, trying to convince Amber to date me. For a little while the calls stopped. So I kind of figured she'd found a boyfriend. I finally contacted her again and she gave in and we went on a date. She took me to her church. Our first real date, outside of church, was a New Year's Eve party where I had the opportunity to give her the first kiss in our relationship. She took me home to my place, and when we got there I showed her a photo album. In the photo album was a picture of this little kid (me) at camp for "crippled and disadvantaged children." She started to cry and said, "You're little Billy!" You see, she went to a neighboring camp, Camp Pioneer, as a child at the same time as me, and the campers from Camp Pioneer got to come over and visit the camp where I was. She saw me sitting at the baseball diamond, wanted to find out more about me, and wanted to just play ball with me. We had actually met 30 years earlier.

When we started to think about getting married we began looking into how I could be married and keep my Medicaid that I need for a personal care aid and medical equipment not covered by regular health insurance. I did not want to put financial pressure onto Amber so I applied for Medicaid through the Medicaid Buy-in for Working People with Disabilities. I can keep my Medicaid as long as our income does not exceed $73,884. My wife still had to fill out a spousal refusal form that states she refuses to be responsible for the financial expenses for my personal care aid and the medical equipment. Some readers might be saying to themselves that sounds a little harsh, but when you consider how much personal care costs per year you would realize that we would not be able to cover the cost with our earnings, so this was the only way to go.

Today, I am truly lucky to have a job where I make enough money that I do not have to worry about SSI benefits. But, many other people with disabilities are not in my position. That's why I'm working with others to try to eliminate the marriage penalties for SSI and Medicaid. I believe that by removing the penalties, the number of people on SSI who marry will increase. This will allow more people with disabilities who have found someone with whom they want to spend their lives to actually be happy and not have to worry about how they are going to be able to live. Please join us in making that happen!

Note: I would like to say thank you to the Self-Advocacy Association of New York State and the SSI Marriage Penalty Task Force for their tireless support and efforts to remove the marriage penalties. Also, thank you to my friends who allowed me to share their stories.