Medicaid for Some, Not All, Who Need It

I keep wanting to write about the latest news in voter suppression, but maybe I'll just point to my August 2016 bit on Ari Berman and his book Give Us the Ballot. He continues to fight the good fight, including a recent article in the New York Times magazine about Kris Kobach, the Kansas attorney general who's running Trump's voter suppression effort.

Instead, today, I want to share a tweet storm from a woman with multiple chronic illnesses named Kristin Rawls. She's a freelance writer on education, health care, politics, religion, and culture, now living in Connecticut. This is what she has to say about the realities of Medicaid and the Affordable Care Act:

I wish more people had the experience of living in a state that didn't expand Medicaid and in a state that did. A doctor who knows that I didn't have medical coverage for five years suggested that I could easily go back to North Carolina to take care of my mom. Without recognizing that that would be a death sentence for me. She said, "Can't you sign up for Medicaid?" Yes, but I can't get it.

People who live in Connecticut do not seem to grasp that there are states with closed Medicaid rolls, where poor people can't get Medicaid. In North Carolina, I would need to be approved for SSI, and then I'd get Medicare as a disabled person. There is no Medicaid. Or, there is barely any Medicaid.

I could have gotten healthcare with something like an $11,000 deductible for about $300/month. That's with Obamacare. Without it, I could get nothing.

And when I applied for SSI, a doctor asked me questions like "Can you sit in a chair for more than 30 minutes at a time?" "Can you walk the length of a parking lot?" Had to answer yes to both. So, I didn't get it.

You have to appeal multiple times. Enlist the help of a lawyer. It takes years. That's the only way for poor people to get coverage in North Carolina. Also, you can't get it if you are doing any paid work when you apply. So I was making a paltry amount of money writing freelance, but the ability to earn any income at all means you're not disabled enough.

If your disabilities are invisible, it's harder to get coverage. A friend who needs mobility devices who everyone assumes is a shoo-in... It took her eight years to get approved, and then it only happened when the family befriended someone who could oversee the application.

I would never have been approved there. Y'all don't get it. Large portions of this country do not have income-based Medicaid.

Refusal of our states to expand Medicaid was a death sentence to many people with disabilities. I am lucky I was able to move. And in the same way, most people in North Carolina do not understand that there is healthcare for the poor in other states. You hear about Medicaid, but you never meet anyone who has ever gotten it (unless they got it while pregnant, which you can do).

If more people in non-expansion states understood the consequences of not expanding Medicaid, people would revolt.

Connecticut had income-based Medicaid before expansion, though. What expansion has meant is that I have equal access to care. A very large number of doctors accept it. I don't have to wait six months to see a specialist. I have had the best access to care of my entire life. Including the year I spent in Canada.

If more people knew that this could be done, if more states had complied with the ACA...

I have so many preexisting conditions, losing the ACA will mean I'll have to find a way to resettle in another country or die. Maybe I can make it a few years after the cuts if the state continues to have income-based Medicaid and I can at least get prescriptions.

Anyway, I'm making this never-ending calculation about whether or not I'm disabled enough on paper to get care after Medicaid is gone. Trumpcare's refusal to die is terror-inducing for those of us with life-threatening conditions who will never be covered again when preexisting conditions come back.

Some of you are worried that your asthma will cost you $300 more a year. Cool cool cool, some of us have imminent death to think about. Many worse off than me. I don't have stage 5 chronic kidney disease. Or cancer or HIV.

But this is scary, and it is traumatizing everyday. We should not be forced to live this way. Every night, I dream that I've been able to move to another country where every living moment isn't consumed with this fear. That's how I know how much this is getting to me. They have completely replaced my PTSD-related dreams.

Now in me dreams, all I do is look for ways out. So, good night.

Rawls's point about people revolting if they knew their governors and legislatures had kept them from health coverage under Medicaid... makes me so sad and angry. That's exactly what I thought would happen, but it hasn't.

How can people in the affected states not know that coverage was possible, that their elected officials have overtly hurt them? Who was supposed to organize in those states, once it became clear the Supreme Court was going to disembowel the Medicaid expansion? How did the message not get out?

And her description of the trauma the Trumpcare saga is causing is real. I hear it from friends with serious preexisting conditions who don't have employer health coverage. They fear for their futures.