How Medicaid Punishes Married People With Disabilities

Last year, The Mighty published an article by Jordan Davidson aptly titled “Medicaid Is Keeping People With Disabilities From Getting Married.” I read it and was honestly grateful that someone had finally written about what myself and so many others had experienced.

This year, unfortunately, this is still true.

My husband recently became employed with a company for a 10-year contract. That company is paying him far more than what he’s used to being paid. That income shot us into the middle class. I thought, “Finally! A break for us! A career-making move for my husband! We can live in a house! What a blessing!”

Then I remembered something: The second I tell the Social Security Administration — the second I tell the Income Support Division — he’s going to lose his insurance and I’m going to lose mine.

The last time my husband made “too much” I contacted these agencies and disclosed that amount. They each gave us 30 days to secure new health insurance. Here’s the funny part: This year, his insurance will expire at the end of the month and mine — I don’t know about mine. I informed the SSA about this three weeks ago and I still haven’t heard back. I’ve faxed our documentation in, contacted our local Congressional representative for help and, when I called my caseworker with the SSA, her voicemail said, “Leave one message and only one.” I can’t call her more than that one time. I even faxed my documentation to her directly. No word.

If I don’t hear back before the month’s end, the SSA will disperse an SSI (Supplemental Security Income) payment to my bank account and my husband will have to register for health insurance alone, which will cost us more than if we both registered at the same time.

The familiar panic has begun to set in. 

What if they don’t get back to me in time? What am I going to do? I have no way to get to their office. What if… and so on and so on.

You see, they will still recognize me as disabled, but they will not offer medical assistance. I have multiple conditions, chief among them Ehlers-Danlos syndrome. My medical bills are outlandishly expensive. The current health insurance marketplace offers high-deductible, high-premium co-insurance type plans to people in our tax bracket. After my medications alone (which cost over $1500 per month without insurance), we will be impoverished and “make too much” to receive any assistance.

We’ve had the “should we get divorced” discussion. I don’t honestly want to do that. I married this man. I don’t want to take those words back. I don’t want it to be “like it never was.” I don’t want it at all.

That leaves us with one option: wait to hear back from the SSA.

I’m not the only one. I have a friend who has a boyfriend. I would love to say “fiance”. I would love to say “husband”. But I can’t. She cannot legally marry him because he “makes too much”. They cannot say they are anything more than friends, roommates and dating because she will lose the health insurance that prevents her from going bankrupt.

I recently spoke to an able-bodied friend of mine and briefly mentioned my loss of health insurance to her. She quickly asked, “What? Why?” I explained the protocol for income to her and she just sat on the other end of the line, stunned. It seemed to be forever before she responded, “That’s… that’s just bullshit! Do they think you’re going to get better or something?” I chuckled at the thought before saying, “No. I’ll still be considered disabled to them. But they are of the mindset that because he makes what he does, we will be able to afford the health insurance, co-insurance, deductible and prescriptions without going bankrupt.”

It’s the same mentality our government has regarding staple necessities like cars or an internet connection. If your spouse works and you are disabled, you may only have one car. Two cars is considered a luxury. Nevermind the sweltering heat or blistering cold. You can walk your disabled self to a bus stop and ride that! Internet connectivity is considered a luxury. Never mind that, according to the United Nations, “internet access is now a basic human right.”

Our country is considered a first-world nation, yet being disabled and having a livable income negates any medical care the government might give. In this country, being disabled and having a car for oneself and one’s spouse is considered a luxury and that car will be counted as a luxury item, to be considered when calculating any disability benefits.

In this country, disabled people are forgotten and sentenced to lifelong misery and possibly death because they are disabled and dare to dream, love or achieve.

We are not “getting better”. We are not “growing out of it”. We are sick. We are dying. We are in need of aid. I have to ask myself two things here: Firstly, what is it going to take for us to be treated like we aren’t burdens? Secondly, what if they are expecting us to “just get better” because we suddenly have more money?

So my final question remains: now what?