Friday, June 5, 2009
In early May of 2009, the federal judge in Hawaii who had been considering a class action suit accusing the state of violating the ADA and Section 504, handed down a decision. As a Federal judge, she stated she lacked "subject matter jurisdiction." I'm just a mom, but federal law ----- federal judge ---- I don't see the problem. With my daughter and I therefore released from the suit, I feel it's important for the disability community, and more importantly, the politicians all the way up to President Obama himself, to see and understand the abominable things the states are getting away with in relation to violating the rights of people with disabilities. I've uploaded the documents in three groups: the letters sent by state to the parents and guardians of children with disabilities; the complaint filed accusing the state of violating EPSDT and the ADA and Section 504; and the third is the filing by the federal court judge claiming she doesn't have subject matter jurisdiction. Here's the story in short: In July of 2008. the Developmental Disabilities Division of our state Department of Health announced that they were reviewing the service hours for any child age 13 or less receiving more than 29 hours of services a week. We were given extensive surveys to fill out. I sent mine in accompanied by a letter from my daughter's doctor stating that her current level of service (24/7 skilled nursing) was medically necessary. As a result, we made it through that set of cuts, although a lot of kids didn't. In late December, 2008, the DD Division announced they were doing a straight 15% cut of the home services offered to adults and children in Hawaii's Home and Community Based Services (defined in federal law by Section 1915(c) of the Social Security Act). The parents and guardians were given a chart so they could choose where their child's services were being cut. Some families noticed that they had been cut already in July, so now they were being asked to sign a form agreeing, in essence, to a 70% cut in services. The cuts were go to into effect on February 1, which coincidentally was also the day our state medicaid service became an HMO-based service. Lawyers and state legislators got involved at that point in time. The state legislature, it turned out, hadn't been told by the DD Division that this was actually a second set of cuts. They had been told that nobody would be endangered by the cuts. State legislation was introduced (and ultimately defeated) that would have used the state's emergency fund to put back the services that had been cut. After the lawyers were involved, the state came up with a complicated appeal process. There were to be informal appeals, and then if you didn't like the result of that, formal appeals. If you read the fine print at the bottom of the form announcing the appeal process, you'll see the state announced that if you lost the informal appeal, and lost the formal appeal with services continuing that entire time, you would have to pay the state back for all those undeserved service hours. Talk about terrifying people into not appealing. The federal decision that came down in May, 2009, threw two of the families out on the basis that they had yet to be damaged by the cuts. The issue that the state government had stated in writing, twice, that they were identifying groups defined by their disabilities and targeting those defined groups with service cuts -- something that clearly violates the Americans with Disabilities Act -- was ignored. My daughter and I are one of those two families. We had our informal appeal in mid-March and have yet to receiving any decision. The federal court was denying subject matter jurisdiction on the basis the service cuts hadn't happened yet, while the state was delaying getting out the results of the informal reviews until the federal court handed down its decision. At least, this is how it has all seemed to me. I don't understand how the Federal government can so blithely allow the states to violate the civil rights of children. Just because they're children with disabilities makes no difference. Can you imagine the uproar if a state announced that they were cutting the book budget just for students of hispanic origin? Or they were cutting the lunch budgets for all girl students? The situations are the same, but in the case of our families, we're all just too exhausted, sad, frustrated and sick to do the kind of yelling that we need to do in order to get the people in charge of health reform to hear us. I plan on emailing the link to the federal court decision to all our state and federal legislators. Can you help get the word out about how our kids are being hurt?
Posted by Disability Mom at 8:52 AM
- 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.