Friday, August 28, 2009

Are 10 of our 50 states committing daily violations of the civil rights of our citizens with disabilities?

I've been having to devote time to my little girl's seizure issues, and my own struggle with our state waiver program over proposed cuts in her nursing hours. So I missed the comment from UCP from my last article and didn't see it until now. I hadn't had a chance to post yet about Alaska's HCBS programs being shut down by CMS, which brought to ten the number of states with either civil suits pending or ongoing federal investigations over cuts made to HCBS services. That means twenty percent of our state governments are possibly committing daily violations of the civil rights of their citizens with disabilities. This is just dead wrong.

Friday, August 14, 2009

Why we need to watch-dog how our states are spending our Recovery Act billion$

Did you know that your state has already received millions, possibly hundreds of millions of Federal Funds that can ONLY be spent on Medicaid. It's a simple "understood" condition of the states getting these new federal grants that are from the Recovery Act, that certain funds can't be spent on anything other than Medicaid, and it can't be put into any kind of reserve or rainy day fund. As of today, the states have received $26 billion just to be spent on Medicaid. These are our taxpayer dollars, and we have a responsibility both to the children and adults with special health care needs that we love and the rest of our national of fellow-taxpayers, to make sure these funds are being spent, shall we say, "responsibly." The information is all online, you just have to navigate through it. I've uploaded a spreadsheet that is up to date as of August 7, 2009, and here is some of what I found: Hawaii has received $223 million as of last week. Of that amount, $130 million can only be used for Medicaid. Hawaii's state recovery website describes how they've used about half a million of it, leaving the other $129.5 million unaccounted for. Alaska has received $103 million. Of that amount, almost $41 million can only be spent on Medicaid. Colorado has received just over $727 million. $235 million can only be spent on Medicaid. Washington has received over $1.4 billion (that isn't a typo). $531 million can only be spent on Medicaid. Kentucky has received $660 million. $352 million can only be spend on Medicaid. Pennsylvania has received $2.1 billion. More than $1 billion of that can only be spent on Medicaid. Yet all of those states currently have class action suits pending against them because they've slashed their Medicaid budgets for home services for the elderly and people with disabilities to the point where thousands, if not millions are being threatened with institutionalization. In this country, threatening someone with institutionalization for their age or disability or other special health care need is a violation of that person's civil rights. Back in 1999, the Supreme Court ruled that people with disabilities had a civil right to remain at home with their families, and in their communities, and that our government had a responsibility to its citizens to pay to ensure that no one was forced against their will into an institution. It's called the Olmstead Decision, and the Office for Civil Rights of the Department of Health and Human Services is responsible for enforcing it. Actually our federal government is currently making it possible for millions of our more vulnerable citizens to stay with their loved ones, even though doing so costs more than rounding them all up in institutions . In what would seem to me to be more of a "Life Panel" than anything else, Medicaid (along with Medicare and the VA) pays out billions to the incredible workforce of nurses, therapists, home care specialists, local medical supply companies and others whose services are medically essential for our elderly, blind, disabled and chronically ill children and parents to remain at home where they can get one on one care from the people who love them the most. Yes, the economy is rotten and the states are all having to tighten their belts. But they've been given an unexpected gift of $26 billion just to help their state medicaid programs. The money is in state bank accounts, ready to be spent. The laws, the institutions, the delivery system are all in place. So why are all these class action suits out there? What's the money being spent on? Each state has their own Recovery Act website. You can find your own state's website by clicking on your state name on this map. The map here will tell you exactly who has received ARRA-related contracts, grants and loans in your state.

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.