Thursday, April 23, 2009

You can't assume that anyone else knows the law

I think that over the past decade or so, the hardest lesson I've had to learn is I can't assume that anyone else really knows about the law. And while I'm talking very specifically about EPSDT, that general statement applies to most of the laws benefiting individuals with disabilities. This tiny little part of federal law gives very distinct, separate civil rights to medical care to our children, rights that they lose after they turn 19 or 20 or 21 (depending on the state, the limit of availability of EPSDT services). It's an ignorance that applies just as much to the people who are trying to help our children, the health activists and the attorneys all over the country fighting their individual cases against the states one by one, as to the state bureaucrats whose job it is to enforce it. The state medicaid waiver programs and EPSDT are supposed to work together to ensure that children with disabilities receive all the care a doctor says is medically necessary. If you need to take your child to a specialist in another state, the cost of transportation, hotel, food and ground transportation is supposed to be provided for the child and a companion. If your child is using a feeding tube and your doctor says one extension tube a day is essential to maintain health and safety conditions, then that is what you should be receiving every month from your medical supply company. And if the doctor says your child is medically fragile and requires 24/7 skilled nursing in your home, then this is what your child should be receiving. This may sound mundane to many people, or simply not a big issue, but there's absolutely no way to say how many children with disabilities could live longer lives if professional nurses were helping with their care? How many children would have a way to communicate with their families if they received the proper treatment, evaluations and technology to enable that communication. To put it simply, how many immobile children would be walking if they had received five or ten hours of physical therapy a week instead of thirty minutes. This is what we, as parents, have to fight for.

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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.