In Pursuit of Healthcare

As a child, I had no idea. No idea that because I was born with cerebral palsy, that I would spend the rest of my life making decisions because of access to (or lack of access to) health care.

As a child, I had health insurance through my parents. Never gave it a second thought. My parents always worked and one or both of them had health insurance. I knew when I went to the doctor, we could afford it. I knew when I had the first of a handful of orthopedic surgeries that I had over the span of nearly a decade from my teens to twenties that we weren’t going to be forced to choose between keeping the lights on or getting me the surgery I needed. I needed it. I got it. Done.

After college, that all changed. During my first job, which, as karma would have it, was selling individual health plans for a small HMO, I was rudely introduced to the real world of health care. The world where “pre-existing conditions” existed, and where cerebral palsy was considered one. Where, even with that, I could get the health insurance we were selling because I worked for the company, but I couldn’t sell it to anyone with a family member with a disability because of their “pre-existing condition.” The one piece of that experience I’m grateful for is that it lit the advocacy fire in my heart. Other than that? Not so much.

They did me the favor of laying me off with 35 other people the Monday after Christmas one year. There was no COBRA back then, and I had no insurance for the first time in my life. I was a pretty healthy 20 something year old with no more surgeries, procedures or medications on the horizon, yet simply because the words “cerebral palsy” were attached to my medical file, I could not get an individual health insurance policy.  I spent most of the next trying to get a job, taking one at half the salary of my first job because–you guessed it–I got health insurance again.

This scenario has played out again and again in my life and it pains me to think that with the attacks on the Affordable Care Act we’re about to return to that time and place. Where me and people like me will be defined and excluded by a diagnosis. Where people with disabilities will be forced to choose between health care and rent. Prescription drugs or electricity.

Access to good, affordable health care is not a luxury–it is a necessity. And it should not be tied to a particular size employer or a particular job. Why? It’s simple.  If we aren’t healthy, we can’t go to school, learn and grow. If we aren’t healthy, we can’t work and contribute to the economy.

The anewer? We must have access to good, decent, affordable healthcare for each and every one of us, from the tiniest baby to the oldest living American. No one should have to make the choices we are forcing people to make in the name of health care. Not me. Not anyone.

The Affordable Care Act was a start in the right direction. Not a perfect piece of legislation, but a good start. It provided millions more people with health care than ever before. So why the rush to gut it? Who does that serve? Stripping away Medicaid coverages that allow people with disabilities to remain independent in their homes and contribute to society instead of being warehoused in institutions. This will make us “great again”? I don’t think so.

 

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