Tuesday, January 19, 2010

What EPSDT as a civil right means for your child and you

Ten days ago I received an email from the federal Office for Civil Rights of DHHS that they would accept civil rights complaints based on EPSDT.  The reason this can have such an enormous impact on the lives of our children is that there's a big difference between legal rights and civil rights.

Legal rights derive from law and can vary from one state to another, even town to town.  In some states you have the legal right to make a u-turn; other states have laws saying you don't have that right.

Civil rights derive from the Constitution and can NOT vary from state to state.  States can't have laws that segregate children into schools on the basis of race, for instance.  That's what yesterday's Martin Luther King, Jr. Day was all about.

Every parent and caregiver for an individual with a disability knows that medical and educational services offered to their loved ones can vary dramatically from one community to another, let alone between states.

What that email from OCR means is that anytime Medicaid turns down a service or treatment that your child's doctor says is "medically necessary", that state might just be violating your child's civil rights.  If Medicaid has reduced your child's home support services (skilled nursing, personal attendants, paraprofessionals, etc.) and those services are deemed "medically necessary" by one of your child's treating practitioners, then the state is almost for sure violating your child's civil rights.

If your child has been signed up by Medicaid but is on a waiting list for services, then there's a good chance his or her civil rights are being violated.

What all this means to us as parents and caregivers is that we suddenly have a more powerful voice to speak with.  Rather than being worn down by due process hearings and the Medicaid appeals process, you can take your complaint straight to the federal government.  Both the Department of Health & Human Services Office of Civil Rights and the Department of Justice's Civil Rights Division are set up to take complaints from individuals on violations of the Americans with Disabilities Act.

And after that OCR email, violations of the ADA can include violations of EPSDT.

I've been advocating for services for my little girl based on EPSDT since about 2002.  It's been a constant struggle with local bureaucrats, services gatekeepers and state budgets.  Now I've been talking with the DHHS Office for Civil Rights since July, including sending them information on other local families in a similar predicament to my own.  The more individual complaints they receive, the more attention they pay.  Enough complaints and your regional office moves them up to their Washington, D.C. office.

In our case, I'm still waiting to find out what the next step will be.  But I have hope, and for more than just the benefit of my own daughter.

We already know, from experience, that advocating on our kids' behalf from the bottom up just doesn't work. As the parents and caregivers of children with disabilities we can join these new stronger voices together and have a potential impact from the top down.

I started the Children's Disability Rights Education Association to provide a forum for bringing our voices together.  What we are doing here in Hawaii can be duplicated across the country.

If you'd like information on advocating for your child based on EPSDT, please email me.

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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.