Please, if you're the parent of a kid with special needs, read this

For the first time in my history as the mom of a kid with disabilities, we parents have the ability to get our kids all the home and school support services, technology and therapies that their doctors think are medically necessary. We can go straight to the source, rather than wait around for our local Department of Education or Voc Rehab to get their paperwork together. All you need is a prescription, the evaluation and a letter of necessity, and you turn it over to your Medicaid case worker. Better yet, some of the corporations such as Dynavox, handle all the paperwork for you. The timing is perfect. The government has dumped over $28 billion into state coffers that can only be spent on Medicaid, with more on the way. Schools have been given more money as well, with a particular emphasis being given to using it on assistive and augmentative technology. The percentage of a state's total Medicaid budget which will actually come out of state accounts is somewhere between 10-35%. I did a rough calculation, and for a state paying the highest percentage, for every $10 million of its own money the state does NOT spend, the state loses about $28 million in immediate jobs and services. The only problem is, in too many states, nobody knows what happens to those stimulus bucks once they disappear into some new, very deep coffers. If your state is continuing to cut medicaid services for your child, if your school is trying to cut service hours from the IEP, then there's a good chance there are some questions about how your stimulus tax dollars are being spent (and even if they are at all). Last week, the Government Accounting Office issued a report focusing on how states are using their stimulus funds. The report called into question the "quality and reliability" of data that the states are giving the feds about how and on what they're spending their stimulus bucks. Meanwhile, Department of Health and Human Services Kathleen Sebelius released an additional $600 in stimulus funds to the states just between September 17 and 30, 2009. Nobody in the media, nobody in the government, is paying attention to the mystery of how states are spending their stimulus dollars. CMS refers all calls on the subject to its Baltimore headquarters. Three states are under some sort of federal investigation for violating federal Medicaid law and the Americans with Disabilities Act, and 7 more have civil suits filed or in preparation alleging similar violations. A friend of mine with disability law experience and I have put together a group called Children's Disability Rights Education Association. Our role is to help parents and caregivers take greater control over their child's health and education. As CDREA we have a petition up, calling on DHHS to require complete accountability from the states, and to ensure priority is given to restoring Medicaid service budget cuts made since July 1, 2008. These cuts have unfairly targeted children as well as adults with disabilities who need skilled care to live at home with their families. Similar problems are plaguing state stimulus funding received for education. I just found this source, but the correlation between what's happening with money for both special education and medicaid home support systems is an atrocious example of discrimination against children, as well as adults, with disabilities. Please consider signing our petition, and forwarding it to your friends.

GAO report cites state lack of accountability for stimulus funds

A report by the Government Accounting Office released Wednesday raises concerns about states' use of stimulus funds, citing "internal control deficiencies". The report notes the "possible risk for the quality and reliability of these data" received from the states. The three recommendations made in the report all center on the need for "clearer accountability for recipient financial data". The report doesn't mention that three states are under some sort of federal investigation for matters related to mis-use of stimulus funds intended to be spent on Medicaid. Civil suits are pending in six states with a seventh in progress, also all related (although indirectly) to mis-use of Medicaid stimulus funds. Those of us whose lives touch the disability community have been well aware for months that states have been targeting certain Medicaid populations for massive budget cuts. The fact these cuts are proceeding while billions of stimulus dollars sit in state bank accounts is appalling.

We're Site of the Day on About.com's Special Needs Children forum

Please read and consider signing our petition - states are continuing to make cuts in services that have a serious impact on the quality of life of our elderly and our people with disabilities while billions of stimulus funds sit in their bank accounts. Thank you Terri for your help!

If you had a company, would you hire back an employee who had stolen $40 million from you?

Because that's what our federal government has done, awarding a national Medicare contract to a company that has just paid $80 million in restitution and penalties to Florida for defrauding their state Medicaid plan, $10 million to the SEC for something else, and even $120,000 to the Florida Election Commission for ""questionable campaign contributions." Wellcare states on its website that the company provides managed care services exclusively for government-sponsored healthcare programs, focusing on Medicaid and Medicare. Some of the states where WellCare is providing Medicaid managed care services are Hawaii, Ohio, Georgia, Florida, Arizona, New York, Louisiana, Texas, Indiana, Illinois and New Jersey. This company that has paid out over $90 million just in the past five months to various federal and state authorities also reported that second quarter 2009 net income was 236% higher than it was in second quarter 2008. That represents a jump from $11.1million in April-May-June 2008 to $37.0 million in the same three months of 2009. Another way to look at WellCare's profit is that the company spent $1.5 billion on medical benefits and receieved $1.8 billion in revenue from premiums. How much of that $300 million profit (just for 3 months) could have been directed back to Medicaid services if these services were not administered by a for-profit company? UnitedHealth Group operates public sector health care programs (i.e., Medicaid and Medicare) in 23 states, under a variety of names. UHG's revenue from premiums for the second quarter of 2009 was $19.7 billion, of which 83.6% was spent on medical services. That's a handy profit for three months of $3.23 billion. That isn't breaking out employee plans from state plans, but in this particular economy, that kind of profit isn't something to be sneezed at. Just in 2009, UnitedHealth Group has paid out over $1 billion in fines to New York, California and Missouri, plus another $62 million in the two preceding years. For profit companies such as WellCare and United Health should not be allowed to administer federally funded programs where their company profits are literally taking necessary medical services away from babies. Decisions on issues such as "medical necessity" should not be left up to a profit-driven company. I live in Hawaii, where our Medicaid program, including EPSDT, is run by WellCare and UnitedHealth Group.

Feds Investigate Hawaii Medicaid Cuts -- News for disability rights advocates

Hawaii's Medicaid program has come under federal scrutiny by one Federal department, and is pending scrutiny by another. The severe budget cuts that Hawaii has been making in its DDMR waiver program, and the way Medicaid is functioning under the new managed care (for profit) system that began February 1, are the objects of this scrutiny. On June 29, I filed a complaint with the Office for Civil Rights of the Department of Health and Human Services (OCR). On August 26, the San Francisco regional office of OCR notified the San Francisco regional office of the Centers for Medicare and Medicaid Services (CMS) of the issues involved. A lot of health and other professionals are relatively unaware of the hugely important role CMS plays in the day to day operation of our state Medicaid and Medicare programs. CMS wrote the last formal interpretation of the Maintenance of Effort (MOE) clause of the American Recovery Act which allowed the states to get away with making substantial medicaid service cuts and still receive stimulus funds. CMS decides how Medicaid and Medicare are supposed to function and issues letters to the states or rulings printed in the Federal Register, and then these items become law for states to follow. CMS isn't set up to handle individual complaints, but is now watching how the Hawaii Medicaid due process system functions, to ensure it functions the way CMS expects it to. As the parent of a child whose home services have been threatened with substantial cuts, I have the security of knowing that the state will have to follow federal law in these hearings. They're not going to be able to just "make it up as they go", as has happened so often in the past. Part of this process is ensuring that EPSDT, which entitles children with special health care needs to a much broader scope of services than normally provided under Medicaid, also functions as intended. From the standpoint of education advocates, this can provide a tremendous opportunity. DHHS has written manuals on how EPSDT and IDEA are supposed to function jointly to meet all the educational, medical and social needs of children with disabilities. They published a brochure in May 2003 with detailed instructions on how state education departments can bill EPSDT for services, and another brochure in 2004 specifically describing how EPSDT services are to be incorporated into the IEP.

Medicaid eligible children with disabilities are entitled to receive medical services in the school setting, paid for by Medicaid, if two important requirements are satisfied. First, the school/school district must be a participating Medicaid provider. Second, the services must be written into the child’s IEP/IFSP, which automatically makes them considered medically necessary.

Since the Hawaii schools are Medicaid providers, there is no reason for Hawaii's children who are eligible for Medicaid to continue to suffer from DOE denials of services. This issue of the integration of EPSDT with the IEPs will continue under federal scrutiny. Doctors can write letters of medical necessity and submit these, along with a prescription, to the child's Medicaid provider (either Evercare or Ohana). Medicaid is then supposed to provide it via the funding they are receiving from the state. That part of the system isn't functioning well right now - but that's how we can all help get things working correctly here. Linda Nuland-Ames and I have formed the Children's Disability Rights Education Association. Our first activity is an online petition to DHHS Secretary Kathleen Sebelius, calling for full transparency of how states are spending their Medicaid stimulus funds and ensuring that a priority is given to using these funds to replace Medicaid services which have been cut since July 1, 2008. According to DHHS, the states have already received over $28 billion in stimulus funds that can ONLY be spent on Medicaid. My state, Hawaii, has already received over $131 million (with more on the way). No one seems to know how it is being spent, and no one wants to answer my question why it isn't being spent restoring Medicaid service cuts. CMS tells me they are also working to have someone made responsible at the state level for communicating between families that have their services cut, and both the Hawaii Department of Health and Department of Human Services. CDREA will reach out to families whose services have been cut to ensure their concerns are heard and receive the consideration they so urgently deserve. Please join us in these actions. Summer Harrison Linda Nuland-Ames Children's Disability Rights Education Association

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.

Petition to force DHHS to track state spending of stimulus funds for Medicaid

So far, the states have received over $28 billion in stimulus funds that can only be spent on Medicaid. Meanwhile ten states are either under investigation by the feds or have class action and civil suits pending, all based on allegations that state cuts made in Medicaid home and community support services are violations of the Americans with Disabilities Act, as well as, possibly, federal Medicaid law. It's reached the point where state Medicaid officials will blatantly bully and threaten a mom with taking away her child. I know, because it happened to me last week. Our petition is asking DHHS Secretary Kathleen Sebelius to reverse the CMS ruling on July 7, 2009, that cuts in medicaid services did not violate the MOE requirement of Section 5001 of the ARRA. We are also asking that DHHS enforce federal laws that are in place to protect the civil rights of the elderly and Americans with disabilities, and ensure that states use stimulus funds to restore cuts made in services since last July 1, 2008. Please consider signing our petition.