The Office for Civil Rights at the Department of Health and Human Services (OCR) investigates complaints by individuals or groups that have anything to do with violations of the Olmstead Decision. The vast majority of Medicaid waiver programs we have now are a result of the "Olmstead Plans" that states were required to design and implement after the June 1999 Supreme Court Decision.
In 2001, the Department of Health and Human Services released a letter to state Medicaid directors explaining how to use EPSDT and their HCBS (Home-and-Community-Based-Services Medicaid waiver groups) programs to meet Olmstead Plan requirements. The document makes it explicity clear that the purpose of EPSDT is to keep children at home.
This is the basis that I helped four other Hawaii families file complaints with OCR over the past five months. Four of the families have medically fragile children under the age of 21, the fifth is a young adult quadriplegic. On February 12, OCR opened official investigations of at least two of these. By now, two families have had services restored that were cut, and a third won her year-long battle for 24/7 skilled nursing for her daughter.
Two of us are left slugging it out, one of which is my own daughter. I've already filed a separate complaint with OCR against Hawaii and UnitedHealth for violating the ADA's ban on coercion and retaliation.
A second and related issue has come up, which is the fact that children covered by EPSDT cannot be put on waiting lists for any kind of "Medicaid coverable" service.
Right now, there are tens of thousands of children and adults with disabilities on waiting lists for home health services. Initial information seems to indicate many of these may now be, or in the past have been, eligible for EPSDT services. It certainly can't be right to penalize adults who are too old for EPSDT now because someone violated their civil rights years ago.
I am continuing to work with families. But the Children's Disability Rights Education Association has put together a petition to OCR and the DOJ asking that they put an immediate halt to this ongoing violation of the civil rights of children and adults with disabilities.
We need to tell our federal civil rights enforcement agencies that enough is enough. They need to step in and put a halt to the daily violations of the civil rights of one of our nation's most vulnerable populations.
Please consider signing the petition and helping get the word out. As the parents, families and caregivers for people with disabilities, including children of all ages we so seldom have the time or opportunity to have our voices heard. CDREA will ensure that this petition reaches the people it's intended for in our federal government.
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About Me
- Disability Mom
- 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.
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