I know this is a long post, but we wanted to post this excerpt from our new book, My Silence Roars by Eastern Kentucky disability advocate, Tina Jackson. This excerpt describes the issues Tina and her husband, Mark, faced when they first married because of the “Marriage Penalty” related to federal benefits for people with disabilities. We hope you’ll read it. The Marriage Penalty is real and affects the lives of real people.
Don’t forget to register for the Release Party for My Silence Roars. It is on Zoom on February 2nd at 2:00 PM. https://www.facebook.com/events/1559623935290210/?acontext=%7B%22action_history%22%3A%22null%22%7D&ref_source=newsfeed&ref_mechanism=feed_attachment
Here is the exxcerpt:
In one way, our decision to marry had some fearful implications.
Boy meets girl. They fall in love, get married and live happily ever after. That is how it should be in a democracy. But if one or both of the lovebirds are disabled or elderly and receive Supplemental Security Income (SSI), not so fast. This legal union can often result in the loss of life-sustaining benefits for one or both of the lovebirds, including food stamps, rent assistance and healthcare, because of the federal “marriage penalties.”
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 can as individuals. In addition, even if a couple doesn’t get legally married, they can be considered to be “holding out” as 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 at all. There is also a resource limit; the amount of money you can have in the bank for an individual by SSI rules is $2,000, but 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 aids, “certain” durable medical equipment, medications, and transportation to medical appointments. So anything affecting SSI eligibility may have a ripple effect.
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. Marriage penalties are affecting real people in America.
As Mark and I stood up in our church in front of our family and friends in 1998 and said our vows to each other, we were unaware of the problems we would soon face with Mark’s benefits. We just knew all the challenges we had overcome to get to this day. We did know our joined lives would be filled with new challenges. but we were not ready to be further punished by our own government.
The stroke I suffered at 24 years left me with vision loss and loss
of my speech. Even though I was born with Cerebral palsy and suffered the stroke, I was able to work for many years. At age 40, I would go on Social Security Disability Insurance (SSDI). When I met my future husband, Mark was unable to do traditional employment because of the brain injury he had acquired when he was 16. As a result, unlike me, he did not have a work record to qualify him for Social Security Disability Insurance so he was getting SSI, medical care, and food stamps and lived in low-income housing. He managed to overcome many of the effects of his injury and live an independent life.
Within two years of knowing each other, we decided to marry. We were both stubbornly independent. Even our pastor jokingly referred to the work it would take for us to compromise on issues.
At the time, we were ignorant of how getting married would affect Mark’s benefits. I was still working so my income made him ineligible for any benefits. Mark was an avid cyclist, but he quit riding for fear that he could get injured and have high medical costs.
We chose to marry out of love and our religious beliefs. It is a decision we almost regretted. We had to come up with a plan to obtain at least medical coverage for Mark. My body could not sustain a full-time job by age 40 and I easily qualified for disability, Medicaid and Medicare. We developed a plan for Mark to have a small business doing lawn care so he could file taxes on his earnings to earn enough points (20) to qualify him for disability and medical coverage. It took 17 years of paying into Social Security for him to finally qualify. Those years were back breaking for Mark and we never believed it was fair to penalize Mark because I had an income.
Many disabled Americans have to choose between a loving marriage or life-saving benefits. We as disabled people have the right to marry. The over 65 population faces the same penalties. Many choose not to legalize their union, but even living together can be considered being married.
Mark and I now both receive disability and medical coverage. It is a great comfort for Mark to have medical coverage because he has needed serious medical attention since qualifying. We are in no ways financially stable and we struggle month to month. Mark has paid a high price for trying to work. He suffers knee pain and had many cuts and bruises in falls due to his poor balance. But we have survived many obstacles in our 27 years of marriage. It was because of our stubborn determination to meet all the qualifications we have been able to live a fairly comfortable life.
{Photo below is the cover of the book with the title of the book, My Silence Roars, at the top. Below that is a picture of the author, Tina Jackso, and her husband Mark, on their three wheel bikes. Below that are the words ‘A Memoir by Tina Jackson.’ The cover background is a later shade of green.)
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