Friday, June 5, 2009

10 states cut funding for kids with disabilities with $200 million on the way from the Feds

According to a story published by the AP on MSNBC on June 4, about $200 million in federal stimulus funds are on the way to the states, mostly for social programs. If this is the case, why is it that states are rushing to cut the services these social programs offer? What's particularly offensive is the fact that many of these state cuts are targeting children (including adult children) with disabilities, aimed at tearing away the support networks that allow these children to remain at home with their families. In the past few months, at least fourteen states have announced cuts in medicaid services. Many states specifically mention targeting the professional services that help these children stay home with their families, rather than being institutionalized. This is particularly ironic, since study after study has shown the substantial cost savings to the states from de-institutionalizing and allowing the aged and people with disabilities to stay in their homes. Class action suits are going on in four states that I know of; in a lot of instances we don't hear of these cases because gag orders are issued against the plaintiffs. It's supposedly to protect the privacy of the plaintiffs, but it also keeps the larger disability community (not to mention the media and our legislators) unaware of what's going on. If a state school system announced it was it was eliminating all classes attended by Hispanic children, and it was now up to their parents to try and figure out how to educate them, there would be a national outcry. Several national groups are trying to circulate petitions and encourage folks to contact their congressional delegations, to show support for the types of medicaid reforms that we need in order to ensure our children receive their civil rights. Please, take the time to sign the petitions and call your congressional leaders. I know what life with a disabled child is like, the heartache, the roller coaster, the exhaustion, the frustration, the feeling you're going to scream if one more state employee tells you they're cutting your child's services. But we've got to stand up and speak for our kids. That's the only way they can be heard. Here are some of the places where you can take action: The American Association of Persons with Disabilities has a petition supporting many of the issues that are plaguing the parents of children with disabilities. (This petition is actually being distributed by a number of separate groups). The ARC's Federal Legislative Action Center United Cerebral Palsy is asking for help supporting legislation to boost the number of direct service care providers, ensuring our children have the professionals they need available. The National Organization to End the Waitlists has a petition to sign to eliminate the waiting lists that prevent thousands of individuals with disabilities from receiving the in-home support services they are entitled to under federal law. Please let your friends, and the other mailing lists you're on, know about the issues, and the options we have to speak up. We have to get Washington's attention before it's too late.

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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.