Hidden Limits

By Jenny Weast

On October 14, 2014, I posted on Facebook that I was in desperate need of legal assistance and advice.

It’s pretty simple. My name is Jenny and I was paralyzed in a skiing accident when I was sixteen years old and became a C5-6 quadriplegic. Soon after, I was told by our government that I could still go to college, have a career, and become independent. There were programs put in place that would support me in my dream to do each of these things. If I put in the work, they would pay for my caregivers to assist with all my personal care, housecleaning, shopping, medical appointments, etc. So, I took the government up on that offer, and became a college graduate, high school teacher, and cheerleading coach who lived independently.

I had made it… family and friends that loved me, incredible caregivers to take care of the things I couldn’t physically do, my own small home, a modified van I could drive myself, coaching a National Champion cheer team, and 105 high school kids per day that I got to teach and inspire.

36 years after our original conversation, the government has decided I have become too successful.The Social Security Administration deemed I had more than the allowed $2,000 in my bank account. 27 years of providing them all of my work related expenses and financial information was disregarded. That this ‘over the limit’ amount occurred on the day I was paid by my school district was irrelevant; they had closed my case. The next agency to send me a denial notice was Medi-Cal. I took all my financial info to them and they baulked at it. My income was too high for their rules. So, my friends contacted our state representatives who in turn requested Medi-Cal take a closer look at my case. They decided my ‘share of cost to stay eligible’ for my caregiver funding was to be more than half of my take-home pay. I am to start paying this share of cost for my caregivers December 1, 2014.

I teach high school Math. It is not mathematically possible to live independently as a C5-6 quad on half of a teacher’s take-home pay. It’s just not possible to pay for your caregivers on your own. So basically, I can’t afford to work. The thought of losing my home, career and independence has devastated my world.

My friends and I have since contacted over a hundred lawyers, agencies dealing with disabilities, economists, politicians and authors on the matter. The responses have ranged from sympathy to hostility toward me, from people telling me to learn to live within the system to those advising me to fight Congress.

My disability and my wheelchair is not my identity. I’ve worked for three decades to just be a friend, family member and teacher. I feel so betrayed by my country’s government. Why didn’t they tell me all those years ago that there were hidden limits, hidden ceilings/restrictions to my success?

That in reality, as a quadriplegic, you can’t be a teacher and live independently in the United States.Our public funding system is terribly flawed when it comes to those who are truly disabled and want to work. I have contributed so much more in taxes and giving back to my community through my work than I have ever taken from our government. I hope those with the power to change the system will do the right thing.

Every person, regardless of his or her physical abilities, should be able to dream of and become a teacher.