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« Attend Cystic Fibrosis Education Day | Main | Obamacare’s Medicaid Burden »

November 28, 2011

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Sharon James

Hello my name is Sharon and I am a disabled adult trying to live the American dream of independence. I would like to share my story with you with the hopes of encouragement, suggestions, guidance and support. I am a C4-5 quadriplegic (spinal cord injury) from a gunshot wound in 1987. From 1988-1993, I lived in a nursing home facility and one day I was presented with an American dream of moving from the nursing facility and living independently in my own home. I moved out of the nursing facility in became roommates with a friend. This was made possible through a Medicaid waiver program through the state of Texas.

I was encouraged by case managers to seek employment and become a productive citizen. In 1994 I became employed at a community college in which I am still employed. In 2000 I moved in my first apartment without a roommate. I have been able to live independently with the assistance of attendant care ensuring that I am taken care of every morning to get out of bed and every night to get to bed as well as my personal needs. In 2007 I was blessed with full-time position at my place of employment.

Last month, I received a letter from the Department of Human Services stating that I now have to pay a co-pay of $1024.13 a month to continue to receive services effective June 1, 2012-ongoing. This is half of my monthly paycheck which leaves it impossible for me to pay my bills. If I lose my services I will no longer have assistance to get out of bed to go to work or do anything productive. Please understand, I do not mind paying my fair share of a co-pay, but this amount is unreasonable. Medicaid rules states persons receiving Medicaid who work are only entitled to keep $2094 of their earnings in the state of Texas regardless of the amount they actually take home. Please be advised this calculation is based on a person's gross income not their net income. I find it hard to believe that the state of Texas has such statutes when persons with disabilities are encouraged to work, but face jeopardy of losing independence when we do.

What do I do? I can't afford to pay the requested co-pay because it is definitely an undue hardship on my behalf. If I lose my Medicaid I am not eligible for attendant care, so where does that leave me? I definitely cannot afford to pay for attendant care with my wages. Does the State of Texas want persons with disabilities to give up on living productive lives and living independently? Well, I am not giving up I am going to stand strong and challenge this rule not only for me, but for other persons with disabilities who may be enduring the same thing, but not strong enough to fight.

Thank you for listening to my story.

What happened to the American dream I was promised?

-Sharon

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