DisabilityVoice
Please Read these Two Important Sections Below:
Section I - Why I started DisabilityVoice
Section II - Medicaid Marriage Penalty Advocacy Online Petition
http://disabilityvoicespace.org/dnn/
WHAT IS DISABILITY VOICE ABOUT?
DisabilityVoice aka DisabilityVoiceSpace is a website and group dedicated to educating the public about people with disabilities. DisabilityVoice does this through original articles and articles in the news. And through its advocacy efforts and by informing Legislators about the problems and challenges people with disabilities face.
DisabilityVoice encourages advocacy by offering a free page to anyone who would like to promote a specific advocacy goal of helping people with disabilities socially, politically, or for public change. DisabilityVoice is located in Appleton Wisconsin, but their advocacy goals span the entire United States. Anyone can receive a free page, but providing a means for people with disabilities to get into advocacy is a main goal. People with disabilities have trouble forming groups and voicing their opinions and needs. As we all know being out in the public is what makes changes in our political world. The free advocacy pages provide various tools including an online petition tool. DisabilityVoice helps create these pages.
Arc of Wisconsin through DAWN (Disability Advocates Wisconsin Network) provided an initial grant to get DisabilityVoice going in helping get people with disabilities into doing advocacy. The DAWN website ( www.dawninfo.org ) has important articles relating to people with disabilities with what is happening politically and for public change in Wisconsin.
If people would like to start a discussion on any topic relating to people with disabilities, DisabilityVoice will work to provide a discussion forum on that topic.
Please visit DisabilityVoice at www.DisabilityVoice.us to learn, raise a voice for people with disabilities, and help out with DisabilityVoice.
Sincerely,
Timothy A Carey
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SECTION I : WHY I STARTED DisabilityVoice aka DisabilityVoiceSpace
My name is Timothy A Carey. I was diagnosed with the genetic disease Duchenne Muscular Dystrophy at age 3. This Neuromuscular disease slowly deteriorates all muscles of the body including heart, lungs, and the bladder leaving scar tissue and fat. At almost 37 I am currently at the point where I am on a ventilator 24/7 and I can only turn my head a little and move my fingertips slightly. I went into a wheelchair at around age 8 and a power wheelchair at age 12.
I have had to deal with many issues relating to people with disabilities. Having a pre-existing condition and high medical bills my only way to receive the care I need is through Medicaid. Medicaid is run by each state, but it is a Federal program. So there are many rules to follow. Many of these rules are intelligent and fair, but some of them are just not right and treat people like they are not citizens with guaranteed rights. And don’t forget about the pursuit of happiness and to run our lives beyond what other people think. People forget people with disabilities are in every aspect of society including minority, sexual orientation, beliefs, and religious beliefs. People with disabilities are often afforded the right to be who they are only when others approve.
One day I decided to call the Wisconsin Representative who at the time owned the housing development behind my mother and stepfather’s house. I asked ask him to come over to talk about the issues important to people with disabilities. The Representative and I had talked in the past when he was in his jeans doing handyman work and we lent our garden hose to him. Surprisingly, a week later I was contacted by one of his people who scheduled a meeting with Steven Wieckert at my home. I told him about issues for people with disabilities including; over charging for Medical Equipment and supplies, the Medicaid threshold limit not changing since the 1980s, and the Medicaid Marriage Penalty. Sometime in 2006 Rep. Wieckert called me about him drafting a bill against Medicaid Marriage Penalty.
In the fall of 2007 I received an email newsletter from DAWN (Disability Advocates Wisconsin Network). They were giving out a grant for a project to increase the number of people with disabilities and/or their family members doing advocacy in Wisconsin communities. I wanted to create a helpful website for people with disabilities for sometime before this. In 2005 I started a yahoo group called DifferentAbled and was going to bring it into my own website, but it seemed overwhelming and I put it on hold. I felt the DAWN grant this was my chance to create a website for people with disabilities. Then Representative Wieckert contacted me and started having me promote the co-signing of his bill against the Medicaid Marriage Penalty in TV, radio, and newspaper. I then decided I was definitely going to go for a DAWN Grassroots Advocacy Grant. I received the full amount of grant money I requested. It seems like working with Rep. Wieckert on the Freedom to Marry bill has given me some credibility.
I started DisabilityVoice to help people with disabilities. I was tired of everyone complaining, but nobody doing anything. I was one of the people who only complained about the rules and the way things are. I worried about my situation and about what might happen to me in the future. I finally decided nobody was going to do anything and I better start doing something. A website to be the voice of all people with disabilities was born. This site should unite people with disabilities and help them start to do advocacy for themselves. Maybe some will help me out with the good work I am trying to do. Please come to www.DisabilityVoice.us to be part of the voice and find out interesting and current information from the news and from articles written by me and others with disabilities. Also, come back often to The Traveling Wheelchair website and this section for newer article links and information having to do with advocacy for people with disabilities.
Sincerely,
Timothy A Carey
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SECTION II ADVOCACY AGAINST MEDICAID MARRIAGE PENALTY
The Medicaid Marriage Penalty is a topic not widely known to most legislators or the public, but is important to people with disability (PWDs). One of the rules people on Medicaid must follow and if the cap reading in order to be on Medicaid is a single person must have less than $2,000 of assets and a married person must have joint assets of less than $3,000. This doesn’t seem much of a problem until you look into it more closely.
I have Duchenne Muscular Dystrophy and I am on a ventilator 24/7. I have a pre-existing condition and my nursing costs alone are more than $300,000 a year. So the only way to receive the care I need is through Medicaid. This is the same for many with permanent disabilities. If I were to get married my spouse would have to spend down any assets over $3000 before I could go back onto Medicaid. This effectively says people with disabilities can either get the care they need without bringing more people into poverty or get married.
Learn more about this misdirected policy by going to the following link.
Click on Medicaid Marriage Penalty Advocacy
The Medicaid Marriage Penalty brings people down for absolutely no reason and forbids PWDs from the pursuit of happiness. PWDs deserve to be able to get married to the one they love without being penalized. I hope you will help raise a united voice against the Medicaid Marriage Penalty by at least signing my online petition.
Bill AB-238 was introduced, working against this penalty, in Wisconsin on April 30, 2009!!!
You can read the entire language of the bill by clicking on AB-238.
Sincerely,
Timothy A Carey
