Thursday, May 21, 2009

Disability Rights Action Alert for National Health Care Reform activities

Two national disability groups have released petitions on the internet. Each petition addresses a different aspect of national health care reform, and both petitions affect the medical civil rights of our children. Please help spread the word of both petitions to all the groups that you participate in. The petition sign up sheets can be submitted over the internet, or you can print them and take them to your local meetings. These both have tremendous implications for our children's futures, and we need to get involved and let our voices be heard. The National Organization to End the Waitlists is focusing their efforts on the waiting lists for entry into the Medicaid waiver programs that plague so many states, and prevent hundreds of thousands of our kids from receiving the medical rights they're entitled to. If you're not familiar with the Medicaid waiver programs, qualification is based on the income and assets of the individual with the disability, and don't take into account any assets or income of the family. A primary focus of the waiver programs is to provide the appropriate in-house medical supports that will enable our kids to stay at home while receiving the appropriate professional medical supports. Once our kids get into these programs, they are pretty much there for life, which for me, at least, provides a sense of relief about my daughter's future. Nowait is also pushing that once an individual is finally placed in a medicaid waiver program, their medical rights don't follow them if these move to another state, and sometimes, just another country. Their petition is here: The Center for Self Determination's goals are much broader: reform Medicaid to ensure that home professional supports are available for those who need them. They're speaking for the wider community of individuals with special health care needs, which includes the elderly, people sufferering from chronic health problems, as well as our kids. I've uploaded to Scrib the Executive Summary of their goals. Signatories already include all the major disability and senior citizen rights groups. The more in-depth reports upon which this summary is built are all linked to here. Their petition is here.

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About Me

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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.