So, last night, I get a letter from the Division of Eligibility Waiver services (DEWS) which is the agency that handles the financial eligibility for the Living at Home Waiver Program, a program I have reluctantly been trying to get on for the past twenty years.
For those of you who don't know me, I am in a wheelchair with a rare form of muscular dystrophy called Spinal Muscular Atrophy, and I am essentially a quadriplegic with limited movement in arms and legs such that I am unable to stand, walk nor dress myself without attendant care. For most of my life, my parents helped with the task of going to the bathroom and getting washed and dressed and to the bathroom. I use to work as a computer programmer, saved my money… did everything I was suppose to do to be a productive member of society. Eventually, as my parents aged, it became difficult for them to get both me and my sister who has the same disability dressed and transported to work. I began to look for attendant care services and discovered that the cost of paying for an attendant to wash and dress me was more money than I was actually able to earn. I was also beginning to have medical issues due to the long hours and my physical condition.
So, I applied for attendant care through the state and went on disability. It turns out that one can not qualify for attendant care services if you still work or have more than $2,000 in assets of any type including a house, car, stamps, coin collections etc etc. To 'spend down' your account to qualify for services, you are also limited to only being permitted to spend your savings on medical related equipment. So… out of necessity, I legitimately spend down my account on medical equipment I needed essentially impoverishing myself to qualify for assistance.
With my mother having a severe stroke putting her into a wheelchair, and my father left to care for me, my sister (who is now bed ridden due to a level four pressure sore), there was a new sense of urgency to getting attendant care. The Department of Social Services currently provide me an attendant four days a week to get dressed in the morning, but I am now in need of someone seven days and nights a week. The budget for DSS keeps getting slashed, so even those few hours are in no way certain. After twenty years on a waiting list, my number finally came up to get on the Living at home waiver program.
To call the people who run DEWS inept is a vast understatement. Since sometime around May, I have provided this bureaucratic nightmare of an incompetent agency every thing they asked for regardless of their idiotic due dates. So far, despite meeting every one of their deadlines, despite calling in a second disability support agency to help through the process, despite meeting every single requirement, they have declined my application for a third time. The reason this time? My application expired due to taking more than six months and they claim I didn't have a medical evaluation which I had in September of 2012. My contact for the Waiver program has since left his agency and my case worker at DEWS has either quit or been fired, and so now it all starts over again.
For a few months, while my mother was in rehabilitation due to her stroke, a short term grant program was paying for attendant care for me a few nights a week to put me in bed. The grant program was created due to massive incompetence by the state handling funding for disability programs when auditors found millions that were suppose to be spent helping the disabled that had somehow fallen through the cracks. So, for a few months, this program was paying for the extra attendant care I needed. Sometime around January, when no attendant showed up to put me to bed one night, I call the agency to discover that the funding ran out. The attendant care agency had apparently continued to send attendants for months past the time the funding ran out. They just sent me a bill which exceeds my savings as I had to 'spend down' my account to qualify for attendant care.
I am a college graduate. I have a degree in business and a degree in computer programming. There is no way that the average person who is in need of this program would be able to navigate the gauntlet of obstacles the state has put in place to prevent individuals with disabilities from getting the services they need. The way the system is set up is a person with a disability must be in absolute poverty before they qualify for even the meager hope of any help. Then, when help is declined or denied, they have absolutely no means whatsoever to have their voices heard as they are undoubtedly imprisoned at home with no money or means for a voice.
Why should this matter to you? Everyone is just one small accident, one small health issue from becoming disabled. I am too tired to fight this anymore. They say that you have to be your own advocate if you are disabled to get the help you need. That basically is a nice way to say, you have to hold your own beggar sign and cup… cause no one is going to help you.
For more on this, read my first post about the frustrations with trying to get attendant care at darkrubymoon.blogspot.com/2012…