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Richard January
Age: 18
From: Columbus, Cherokee County
Impact of Budget Cuts: HCBS/PD Waiver Waiting List
Senator: Jim Barone (13th) or Dwayne Umbarger (14th)
Representative: Doug Gatewood (1st)
I am eighteen years young. I was born with a major birth defect (Spinal Bifida), which has left me with neurological deficits and major physical deficits. My parents were told at my birth that I would not be able walk, crawl, or even sit up on my own. Since birth I have had 26 major operations and two "clinical" deaths.
I would like very much to live as an independent adult. I currently live with my parents. I have no other options because I am on the waiting list for HCBS. My mother has attempted to work, which only resulted in her resignation so she could remain at home to provide my care. This causes financial hardship for my parents. As a child I understand that this was their financial responsibility, but now that I am an adult, it should be mine.
While I attended school I felt pretty much like the other
kids because I had the support that I needed including a
full-time one-on-one para-professional. Again, I felt
pretty much like a normal student with the assistance
available through my I.E.P., but now that is gone.
These services were there before I was eighteen. But now
that I am an adult and there is a waiting list for HCBS, I
have no services.
Now I need services in the home to begin my life, so that, I too, can become a productive adult. I understand that my score on the HCBS assessment qualified me for services, but all that has happened is that I was placed on an unfair and unjust waiting list, which I have been told, is against the federal law. I have been waiting since July 2002.
I have two choices. One is to live at home so that my parents can provide my care, again forcing my mother to stay at home to provide my needed care, although she cannot really provide it all. The other choice, which I do not like, is to live in a nursing home. I feel that it is uncalled for when an eighteen year old is forced to live in a nursing home.
I am young and vibrant and want to begin my life as an adult and feel like I am beginning life; I don't feel like it should be the end before my adult life starts. Through supports and services I would have the opportunity to go to school and learn a trade, go out in the community, interact with my peers, but more importantly, I would have the chance to live an independent life.
My peers and friends are not disabled, and are going on with their lives, including my twin brother. They have all gone on to college while my life is at a stand still, leaving me behind my twin brother and my peers. It is very depressing to see this happen.
IF I WOULD NOT HAVE BEEN PLACED ON A WAITING LIST, I WOULD HAVE HAD THE OPPORTUNITY TO HAVE STARTED WORKING TOWARDS MY GOALS! I HAVE BEEN DISCRIMINATED AGAINST BECAUSE OTHER PEOPLE WITH DISABILITIES ARE RECEIVING HCBS AND I AM ON A WAITING LIST FOR THE SAME SERVICES.I AM PREPARED TO DO MY PART, NOW I ASK THAT YOU DO YOURS. OBEY THE FEDERAL LAWS AND PROVIDE ME WITH SERVICES IMMEDIATELY SO THAT I CAN GET ON WITH MY LIFE.
Richard January l Contents l Jean Alverez/Carol Rhea
Statewide Independent Living Council of
Kansas
www.silck.org
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