Theo Braddy examines myths, stereotypes and assumptions about people with disabilities.
Today, I decided to write about a particular issue that I have struggled to understand for many years. Only recently, after undergoing some personal challenges, did I finally decide the issue must be addressed publicly. I am not sure if anything will change based on my writing about this particular issue, but at least I will speak on it. Let me see if I can even clearly state this particular issue facing me and many others like me. The issue is how programs like the Act 150 program and other income eligible based programs are administered in Pennsylvania for persons with disabilities. Before I get fully into my particular challenges with this issue, you need to know a little about my story that is way too often, others' stories as well.
I am a C-4 Quadriplegic, paralyzed from the neck down at age fifteen, due to playing high school football. I could spend a lot of time telling you how many public funded programs have helped me along the way in my life to get to where I am today. I am 55 years old. I have been on public assistance and have received social security disability income assistance. Medicaid and Medicare benefitted my overall health until I became gainfully employed in 1988. The Pennsylvania Office of Vocational Rehabilitation (OVR) is by far one of the best things that ever happened to me in my struggle to become gainfully employed. OVR helped me all the way through college with both my undergraduate and graduate degrees. So by no means did I pull myself up by my own bootstraps - I had help! Nevertheless, I worked hard, studied hard, spent many late nights studying for tests and writing countless papers and working un-paid internships, which enabled me to roll across those two stages to receive my diplomas.
I tell you all of that to tell you this. I made it! Just like many non-disabled hardworking women or men who did the same thing. Just like many other hardworking people with disabilities, like myself. We do it because we want to be successful in life, to be independent, to live well and to be able to give back.
Since becoming employed in 1988, I have certainly given back in taxes and spending, way over what has been poured into me through public assistance and other state and federal programs.
Enough background let me get back to the real reason of why I am writing about this issue, I mentioned earlier how programs like the Act 150 program and other income eligible based programs are administered in Pennsylvania for persons with disabilities. Act 150, is the PA Attendant Care program that provides for attendant care services for persons with disabilities, in order for us to be able to participate in daily life. My attendant helps me with dressing, bathing and other daily tasks that due to my paralysis I am not able to do for myself.
In order for me to access this state administered program I must undergo an annual assessment to determine what fee amount, based on my income, I must pay in order to use this service. In my family household both my wife's income and my income are counted to determine my weekly fee, minus any allowable medical expenses, of course. However, if your allowable medical expenses are low, your weekly fee can be somewhat overwhelming. Over the years, my weekly fee has been as high as $150 per week. Only recently has it been $50 per week and this is due to the fortunate diagnosis of me becoming diabetic (did I say fortunate?). Yes, I find myself thinking what other illness needs to happen to me so that I can afford my much needed attendant care services? Must I hope and pray for some other medical condition? But, then I realized, I still need to figure out how I would pay for the prescription drugs I would need. This is my Act 150 dilemma.
What I further realized about this crazy unfairness is this - although we must manage the everyday expenses as our non-disabled counterparts do, they are not subject to these additional expenses in their everyday lives.
Let me make this point even clearer. Earlier, I mentioned other income based state run programs. I recently purchased a new accessible van and OVR assisted me with the modifications I needed for my van (readers, keep this in mind, I love OVR), but understand this too is associated with being assessed with an out-of-pocket fee based on your income. It cost me an additional $6,200.00.
I recently purchased a new motorized wheelchair and at present it looks like an out-of-pocket fee may be assessed in the area of an additional $3,000.
People with disabilities, like myself, work very hard to work their way out of depending on public assistance, but it seems, even when you are successful and work your way out of it, the system is stacked against you! For the first time in my life and at a time where I am becoming more and more in need of attendant care services I must seriously consider giving it up because I can't afford it.
I have worked over 30 years trying to improve the lives of people with all types of disabilities and to a degree I know I have made a difference. But for some reason I don't have much hope about the issue that I have tried to explain here. I have discussed this with other disabled colleagues and they too feel the sense of helplessness when it comes to these issues.
Will what I am writing here make a difference? Probably not, but like I said earlier, at least I am making you aware of it.
Theo W. Braddy is the CEO of the Center for Independent Living of Central Pennsylvania (CILCP) and a person with a disability. If this is an issue that is facing you or someone you know, he wants to hear from you. Theo can be emailed at TheoBraddy@cilcp.org.