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w I met Governor Jeb Bush at family Café 2002 a mental and physical disability conference.I finally opened my big mouth and said I am from Monroe County and their idea of health care is to have me spent 18 to 20 hours a day in bed and the only crime I committed was being born disabled.
Scott G. LaLonde Duchenne Muscular Dystrophy
Website:http://sglalonde.tripod.com/
E-mail [email protected]
MySpace http://www.myspace.com/scottklflaolcom
My MySpace URL: groups.myspace.com/Disabledcivilrights______________________
______________________________________I met Governor Jeb Bush when I went to family Café in Orlando which is for mentally and physically disabled people to a voice our opinion to Governor Jeb Bush about disability issues. And he gave a speech about a Med Waiver direct pay program that would give me 97% of what Medicare is billed. I thought well this would be a great program for me to be on. They started asking questions from the audience.I finally opened my big mouth and said I am from Monroe County and their idea of health care is to have me spent 18 to 20 hours a day in bed and the only crime I committed was being born disabled. Governor Jeb Bush said they didn't have anymore time for any more questions he has other obligations to go to with his wife. I said no I would not be silent I have the floor now like a voice in the wilderness someone finally brought me a microphone. I made the same statement again but this time with a microphone I would not give up the floor I played a Mr. Smith goes to Washington have you ever watched the old black-and-white movie rule is as long as you keep talking they cannot remove you from the floor it is proper form for the house of representatives. Finally after seeing I would not be quiet Governor Jeb Bush came off the podium and came out into the audience to give me his personal e-mail address at the time I was a member of Center for Independent Living of the Keys and so was my father. I had all this pent-up anger and finally I had my chance to voice my opinion. And I did unfortunately there was no camera to be found I guess disabled people are too much of a small minority that it was not newsworthy enough. After this I got the advocacy bug bite.So I started a letter writing campaign and when I receive letters from representatives I sent back my responses I kept these letters and responses and even some schoolchildren's wrote some notes about how unfair this treatment was that the agencies would come at 8 clock in the morning and putting me back in bed at five o'clock at night. Berrnice first grade class imagine if someone got caught putting their dog in a pen for 18 to 20 hours a day somebody would call animal abuse and here I am a human being treated this way.I even got a picture of me and my father talking with Governor Jeb Bush and made a documentation packet with that picture of me talking to Jeb Bush about this issue and put all the papers I had collected and sent them directly to the White House of the United States signature return receipt. I received the receipt but have not received a letter discussing this issue even with the picture of his brother Governor Jeb Bush on the cover page. To this day I have never received anything back from the White House.If I’m being treated this way how many others are being treated this way who don't know what they are legally entitled to in this great nation of ours and not receiving proper care. Some states are better than others Florida is one of the worst. There is a George W. Bush presidential Executive Order13217 (http://www.whitehouse.gov/news/releases/2001/06/20010619.ht
ml) of June 18, 2001 stating that disabled people should have the choice of living where they want to instead of having on choice and being put into a nursing home which is exactly what they wanted to do with me. Called the Supreme Court Olmstead Decision. (http://www.accessiblesociety.org/topics/ada/olmsteadovervie
w.htm) Which is a great milestone for the disabled minority of this great country of ours!The following letter was sent on January 14, 2000, by the Health Care Financing Administration to State Medicaid Directors urging Medicaid Directors to work to implement the Olmstead Decision. (http://www.advocacycenter.org/news/newsletter-jan01/jan2001
d.htm )My lawyer Gordon ([email protected]) from The Advocacy Center for Persons with Disabilities,Inc. Florida's Protection and Advocacy Program for Persons with Disabilities.( http://www.advocacycenter.org/index.html) We appeared before Florida Department of children and families hearing officer from the state of Florida on three occasions on the final occasion after eight years of being treated this way. They said that it was okay because I was finally receiving services that I was entitled to. Yes it is an entitlement According to the Supreme Court Olmstead decision! I stated do you think you are the Catholic Church you’re just going to have the whole thing annulled like it never happened. I stated I lived under these conditions for all those years and I will not forget. So they brush the whole thing underneath the carpet like it never happened. Gordon my lawyer told me I never really had my fair day in court.I even wrote to 20/20,60 minutes, Oprah Winfrey show, Channel 6 and 7 news. But I never heard anything in response to my predicament!Is there any way the Miami Herald could do anything to help me with this situation I do not want to have another disabled person to live through what I have endured.Sincerely,Scott G.LaLonde
