When the state threatens to institutionalize your kid

This country has come to a sorry place indeed when state government employees are so accustomed to discriminating against Americans with disabilities that they would threaten a mom with institutionalizing her child during a formal hearing. That's what happened to me on September 9, at the formal appeal hearing with Hawaii's Department of Health over cuts they are trying to make to my daughter's nursing services. In all fairness, what was specifically said, multiple times, was that children "like your daughter" don't live at home, they live in institutions where the costs are lower. The costs are lower because the children then don't require one-on-one nursing all day, they're just one of a dozen or more that a nurse covers in her rounds. Shaken, I finally asked the state employee if he was threatening to take Hannah away and institutionalize her. He said no, but continued to refer to children "like Hannah" being typically cared for in medical settings, not their family home. Hannah is medically fragile, and her brain is in status seizure for 90% of the time she's sleeping. During the day, her brain has seizure spikes almost constantly. Her diagnoses are a bunch of acronyms like CSWS, ESES, MISDs, CP, GERD, and then there's the cortical blindness and inability to eat through her mouth, all due to brain damage at or before birth. But at age 10 she walks, talks (although it's extremely difficult to understand her), uses a touchscreen computer for learning, and a recent evaluation says she's ready to learn basic sentence structure and math. The only way to make her one of a dozen kids on a nurse's rounds is to lock her in a cage so she can't move about, and hope she doesn't have a full-blown seizure and die before the next one. And doing so against my will is violating my daughter's rights as an American with disabilities, as a child on Medicaid, and as an individual with developmental disabilities participating in a state waiver program authorized under Social Security Act Title XIX, Section 1915(c). Hawaii, like many other states, has been flagrantly targeting children as well as adults with disabilities for major cuts in the services paid for by Medicaid that allow them to remain at home with their families and in their communities. This is happening in spite of the fact that the federal government has already given the states more than $28 billion that can only be spent on Medicaid, and was intended as stimulus funds to bring immediate relief to state populations. At Hannah's hearing last week, the state testified that they were allowed to make across the board cuts to Medicaid service budgets because state law said they could only pay for services as they had the state and federal funds to do so. I asked why Hawaii wasn't spending any of the $170 million they had already received as Medicaid stimulus funds to restore services, rather than insist on cutting them. (Actually I made a mistake -- the federal government has made $171 million available to Hawaii so far, but the state has only banked about $131 million of it.) The employees of the state Department of Health mumbled to each other, and responded they weren't prepared to answer the question. The state also testified that they ordered the cuts in December 2008 because if they hadn't, the Developmental Disabilities Division would have run out of funds by the end of the fiscal year (June 30, 2009). So I asked why, if they found themselves running out of money in December, they didn't simply restore the $14 million they had cut out of the FY2009 budget, which represented about 65% of the Division's total budget. Nobody had an answer for that question either. That's when I decided that we need to get our federal government to pay attention to the rampant discrimination against Americans with disabilities that is taking place. There is such a simple way to correct it -- the CMS issued a letter to the states in July 7, 2009, which let the states off the hook for cutting medicaid services in order to receive their stimulus money. Just rescind it, and make sure the states are actually spending their Medicaid stimulus funds, especially to restore previous cuts in home and community based services. Please take a look at our petition and consider signing it.

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.