Friday, July 3, 2009

Shirley Hufstedler and EPSDT

If you're not familiar with her name, Shirley Hufstedler was the very first US Secretary of the Department of Education. Jimmy Carter appointed her, and according to Wikopedia, said that if he'd had an appointment to make to the Supreme Court, it would have Hufstedler. During the fourteen months that she served as the Secretary for Education, a brochure on EPSDT was jointly published by Hufstedler's DOE and the Health Care Financing and Public Health Administrations of the Department of Health and Human Services. The 1980 brochure (the date is handwritten on the cover of what I found on the internet) is titled "EPSDT - A How-To Guide for Educational Programs." As a parent who has spent the past seven years advocating separately for my daughter's rights under IDEA and EPSDT, this is strange news. On page 17, it clearly states that there should be only a single care plan for each child, so that services received under EPSDT are clearly delineated in the IEP. It's a fascinating document on how all the civil rights of our kids with disabilities were supposed to be cared for by an integrated system working towards individualized goals and accomplishments for each child. A second document, targeted specifically for parents, was published by DHHS in September, 2004. It says the same thing about joint EPSDT/IEP care plans. If any parent reading this has such a thing, would you please let me know? In other words, home care, nursing care, additional speech, physical or occupational therapies (in addition to those paid for by DOE), assistive technology, all marked as paid by EPSDT, are in your child's IEP?

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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.