Tuesday, April 7, 2009

Why isn't the disability community talking about EPSDT?

I'm the mother of a child with multiple severe disabilities. She's legally classified as medically fragile, and she's needed to have her own attorney since she was 3 in order to ensure her federally mandated civil rights weren't violated. I'm going to start off by saying that I think every politician in this country should be appalled by the fact a 3 year old who can't even crawl let alone walk, is blind and having constant seizures needs a lawyer. What have we come to as a society when our weakest members are trodden upon by the very bureaucrats whose job is to help them? I've spent thousands of hours over the past decade researching my daughter's conditions on the internet. Along the way I've joined more Yahoo groups and discussion forums than I can remember, as each new diagnosis led to a new set of questions. About a year into this journey, someone mentioned EPSDT to me. It's an acronym for Early Prevention, Screening, Diagnosis and Treatment, a federal program for children on medicaid defined under our Social Security Act and codified in law. What began as a way to advocate successfully for my daughter's medical care has eventually turned into activism. EPSDT provides all children with disabilities the right to all medical care that the child's doctor says is "medically necessary". There are no ifs, ands or buts about it -- and in spite of various legal attempts by states to narrow the definition of "medically necessary", the statement stands as is, with no conditions. According to a US government written pamphlet on EPSDT, if a doctor says your child needs 24/7 skilled nursing in order to stay at home, then the state medicaid program must provide this. If a doctor says your child needs an augmentive communication device and 2 hours a week of specialized therapy, then either medicaid, or your local school system (if your child is over 3 and your school district can bill medicaid) has to pay for the device and therapy. I'm on one forum where most of the children are functioning below the age of a one or two year old infant. They did a survey recently, and I was appalled to see how few of the families on that list received significant nursing services through their state medicaid programs. The inequality in services not just from one state to another, but sometimes from one city to another in the same state, is atrocious. The election gave many disability rights activists a chance to let their voices be heard. One of the things that became apparent from what was happening on Change.org and other groups was that the disability community in some ways had become so fragmented by specialization that pulling together for one goal was a challenge. As a result, for instance, medical marijuana drew more votes than equalizing care for individuals with disabilities did. I'm not commenting at all on the medical marijuana issue. But why should equal care for the weakest members of our society be of so much less importance to the American public? In the past eight months or so the various political issues involving disability rights have been gaining prominence. That hasn't necessarily been a good thing, as much of the prominence has evolved from a growing negative impact upon the disability community. Beginning last summer, I noticed a growing number of moms on the disability forums mentioning their states were cutting services: one state cut diapers, another cut the formula for people who depend on surgically installed tubes in their stomach for their food, and a third cut the personnel services that enable individuals with special health care needs to stay in their homes, with their families, rather than being placed in institutions. Which all gets back to my original question -- why isn't the disability rights community talking about EPSDT? Funds provided through EPSDT are federal and can't be cut. The services can't be cut. Even where states are working hard at limiting what are called medicaid waiver services, the benefits of EPSDT are expected to continue as a "wrap around." So why isn't anybody talking about EPSDT? With all of the disability-related posts on Change.com and Change.org, there was no mention of using EPSDT to further medical care for individuals with special health care needs. That's why I'm doing this blog. I've been doing research on EPSDT for years now, and want a place to post it all. There needs to be a place where the only criterion for interest is in people with special health care needs, whether they're elderly, have a disability or are suffering from a chronic illness.

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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.