I hate stairs   In case of a fire, use the elevator. Quickly.

I’m nearing my last year of school. This time next year, I hope to be employed. The taxpayers of Mississippi and the nation have helped me with the cost of attendants and the cost of my education. I am grateful, and I am ready to get a job and put back into the system. That’s the problem though. I can’t seem to find a way off of the system.

I’m receiving insurance and healthcare benefits through Medicaid. While there is at least one Medicaid program that would allow me to earn a moderate salary, all Medicaid programs I have found out about share one financially damaging caveat. I can only have $2000 in savings (more accurately, resources, which include savings, property besides home, extra vehicles, etc.). Furthermore, I was told by a Social Security employee that Medicaid’s policies change from year to year, and I could possibly find myself suddenly uneligible. So there I would be, with only $2000 in savings and no health insurance. And if I were to get a raise or promotion, I might be put over the salary cap.

It is possible that if I had a high enough salary, I could pay my attendants out of pocket. And I may be able to get insurance through my job. The problem is that it takes about sixteen hours of attendant care per day if I were to live completely independently (as I do in college). If I stayed at home, I would need four to eight hours a day. The expenses add up. How can I pay an attendant a decent wage when I may be only making a decent wage myself?

The problem is that the same support I need to get through college, I will need when I get a job. But the programs I rely on now either cease after school or will limit my career opportunities. There’s no transition. Not being able to move forward, should I simply stay unemployed and continue living with full Medicaid benefits?

I believe the solution lies in a compromise of transition. A program by which people with disabilities can work without financial caps, giving them full access to any career opportunities. But it could also minimize the cost of benefits the state would provide. Here’s how it would work. Let’s assume I get a job and I am able to get insurance through my employer. I would have a counselor who determines how many hours of assistance I need (a counselor would also be helpful for making sure people don’t abuse the system). Then, the counselor would take my yearly (or monthly) income and run it through a formula that would result in the amount of financial assistance I would get. It would be assumed that I could personally cover the rest. That’s it. Simple.

It’s a win-win. I get to work and take advantage of any career opportunities, and the state will save money. I would be paying taxes and covering some or most of my attendant costs.

If only I could imagine this program into existance.

It’s a trick question really. Fact is, I don’t necessarily hate stairs. Being that I use a wheelchair to get around, stairs represent an obstacle which I must avoid or overcome. But I don’t necessarily hate obstacles either. When you overcome them, they make you a better person than you were before. “So what’s with this silly name then, Blake?” you might ask. As often is true, the answer lies in the question. It’s just a silly name. I’m sure we could extract some deep, significant meaning from it if we so desired, but it would have to be in the wee hours of the morning following an intense discussion of the meaning of life.

The more appropriate question would be “why did I start this blog?”

I began this memoir for two reasons. First, I did it for myself. Discussing disability issues has been an interest of mine since college, perhaps before. I enjoy sharing my closest of thoughts with my closest of friends. Though somewhat shy about discussing more personal issues with acquaintances, I found that many parents of children with neuromuscular diseases (and other disabilities) found in me and my brother something they did not always grasp from doctors.

Hope.

These parents found some small bit of comfort in their time of crisis knowing that their children could grow up, live life, and be happy. This, in part, forms the second reason for starting this blog. I believe there are people out there, whether they be parents of disabled children or the children themselves or adults with disabilities, who can relate to my experiences.

So I did it for myself. But I hope I can impart at least some small amount of knowledge and understanding to anyone who decides to join me. Even more, I hope to learn from their experiences as well.

Back to the future

“I hate stairs” (or maybe iHateStairs? ihatestairs?) is a place for me to share with you the part of my life affected by disabillity. As you can imagine, all types of issues, thoughts, an observations could fall into this category. Be prepared. They will be diverse. Some will preach opportunity. Some will vent frustrations. Some will be tangible. Some will be abstract thoughts. In anything I say, I mean no offense to anyone. Disabillity can be a touchy subject. But we can move past that and nurture discussion.

And one more thing I should probably mention: I hate stairs. :-)