Hawaii leads in national attack against people with disabilities

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The first argument the Supreme Court will hear when it begins its new term on October 3 could determine if this country’s entire disability population will be denied the protections of federal law.

We have until then to let our government know we do not support selling off "the 'social contract' that provides a decent, functioning society" to Wall Street so shareholders can make bigger profits.

Families like mine stand to lose the right to stay together, even when a child’s disabilities are so extensive the only alternative is a cage crib in a hospital somewhere. It was the Bush Administration that supported extending the social contract to children with disabilities by granting them legal rights to medical care in 1989.

Giving Wall Street corporations already caught embezzling hundreds of millions of federal dollars the ability to embezzle hundreds of billions more is insanity. But removing federal oversight now gives states the ability to restrict rights granted under federal law. The state can then legislate away the ability to appeal these corporation’s decisions, for instance, saving the companies money on legal fees while supporting increasing corporate earnings.

That is what has been happening in Hawaii, where Unitedhealth and Wellcare control two-thirds of the state’s Medicaid budget.

Last month Governor Neil Abercrombie admitted the purpose of Act 230 (formerly SB 1274) was to save Hawaii's private Medicaid contractors money on legal fees.

Act 230 goes into effect on January 1, 2012. At that time everyone enrolled in Medicaid loses the right to legal help in fighting life-threatening denials of medical services.

Last month he admitted the purpose of Act 230 (formerly SB 1274) was to save Hawaii's private Medicaid contractors money on legal fees.

Act 230 goes into effect on January 1, 2012. At that time everyone enrolled in Medicaid loses the right to legal help in fighting life-threatening denials of medical services.

With legal decisions coming down against the state only two days after the governor's "I am failing" speech, Unitedhealth continues until then to wrack up significant legal bills.

Now Abercrombie has found a way to save Unitedhealth money before January 1: by denying reimbursement for expert witnesses that testified on that child's behalf. The state has abruptly reversed a ten year old policy upheld by two previous administrations.

Honolulu attorney Rafael del Castillo represents my daughter Hannah, and five other families of my personal acquaintance. We are all fighting Unitedhealth's on-going denials of medically necessary services on behalf of our children with disabilities, services the state is paying them to provide.

The company is refusing to provide these services because they would cost too much money and that would have a negative impact on shareholder earnings. The services in all cases have been prescribed by our children's doctors.

Del Castillo asks for no money from his clients, even to pay advance costs for expert witnesses. H.R.S. 432E-6 is the state law that makes health insurance companies in Hawaii responsible for the fees incurred by the patient in appealing medical care denials, regardless of who wins the case. Del Castillo takes the chance he he will win in order to get paid. He is up to over 90% wins the last I heard.

Act 230 repeals H.R.S. 432E-6. Del Castillo says last week's move to prohibit reimbursement for expert witnesses goes "as far as the Administration could possibly go to repeal the law before the repeal takes effect on January 1."

When sister legislation to SB 1274 was introduced earlier this year, it turned out to have been drafted by attorneys for Wellcare, the other contractor for the state's disability services program. Interestingly, it would have made enrollees responsible for the legal fees of the insurance company, even when the insurance company lost.

Later the state legislature tried to make SB 1274 retroactive to January 1. Since there were twelve appeals cases pending, it was estimated at the time the measure would save Unitedhealth alone about $500,000.

Del Castillo is representing the person with disabilities in all twelve of these cases.

According to Del Castillo, "the Abercrombie Administration knows that it is making pending patient rights cases ... virtually impossible to win unless one of two things happens: The patient pays for any experts who cannot afford to work for free, or I pay for them. The Abercrombie Administration knows ... that I will have to pay for the experts out of my own pocket or lose the cases. "

It is more than beginning to look a lot like retaliation and harassment, both of which are prohibited by the Americans with Disabilities Act.

One of the questions that has to be asked now is whether Abercrombie's anti-Medicaid actions have become sufficiently blatant that our major Honolulu media will break their years-old black-out on news concerning Rafael.

Years ago he was told the insurance companies threatened to pull their media advertising if any story involving Rafael was run. When Rafael ran for Congress in 2010, neither major newspaper nor any of the TV stations mentioned it when he came in third.

The Honolulu media ran a single story in seven months concerning SB 1274. It was a television piece that aired late at night, and was a major embarrassment for Unitedhealth (their attorney told the reporter Unitedhealth was spending too much money on legal fees).

As a result, more than a quarter million people are unaware they are losing major civil rights on January 1.

What is happening now in Hawaii is symptomatic of the political power wielded by these publicly traded Medicaid contractors. The state first "disables itself", in del Castillo's words, by decimating the employment infrastructure that supported the previous fee-for-service Medicaid program. The contractors are being paid public funds to provide "managed care", so state employees become redundant.

The Medicaid contractors eventually become "too big" to fail; or more accurately, "too big to take down for criminal activity." That can be the only explanation for why companies caught stealing children's Medicaid money not only get new contracts, but get premium raises in the states from which they have embezzled funds.

State contracts to provide Medicaid services to the local disability community are extremely lucrative. They are calculated on a monthly per person basis, depending on the "risk" of the company incurring significant charges for that individual. Unitedhealth is likely receiving somewhere between $12,000 and $27,000 per month for each of Rafael's clients.

These so called "abd" contracts ("aged, blind and disabled") have an enormous impact on shareholder profits. In just under three years, Unitedhealth's Medicaid membership increased about 50%, while Medicaid revenues were up 135%, and net quarterly earnings up 318% (that is not a typo).

At least six Federal civil rights investigations have been opened in Hawaii since February 2010. The four children represented were all facing cuts in home nursing services. Between the ages of four and ten, all are medically fragile, to varying degrees technology dependent, none can eat by mouth, one is completely immobile, none of the others can walk by themselves, and three are too medically fragile to attend school with other children.

You see, our nation has a most enlightened policy towards children with disabilities. Medicaid law gives children (under 21) a legal right to services prescribed as "medically necessary" by their doctor or other provider. These become civil rights when those services involve ensuring that children can live at home with their families.

These legal and civil rights are a mandated part of any state's Medicaid program. They are expensive and they are comprehensive. The disability population may only represent twenty-eight percent of all Medicaid beneficiaries, but are allocated two-thirds of the national budget. Less than fourteen percent of the budget is spent on healthy, working age adults.

It is called the Early Periodic Screening, Detection & Treatment program, or EPSDT. While federal Medicaid regulations also mandate family education about EPSDT, the unfortunate truth is that most states are violating those regulations. Few families know what is available to them.

It is relatively easy to embezzle public money intended to provide services for children with disabilities. The kids themselves are frequently not in a position to speak up on their own behalf, and parents are often in a state of "shell shock" from caring for a child in danger of dying 24/7.

Unitedhealth, Wellcare and the state of Hawaii Department of Human Services Medicaid division have been under some sort of federal scrutiny for violating the rights of people with disabilities almost continuously since September 2009. That is less than six months after they started their $100 million per month contract with the state. In March 2010, legislative leaders were caught on tape reacting to sworn testimony that the death rate among enrollees jumped 36% in the first twelve months.

The public in Hawaii has heard nothing of any investigation into that horrendous assertion. Far more interesting, the relatively unknown governor of Hawaii is accomplishing "a de facto move toward the block-granting of Medicaid", exactly as predicted by Simon Lazarus of the National Senior Citizen Law enter three months ago.

Block-granting Medicaid, according to the Kaiser Foundation, means "that the federal government
gives states a fixed amount of money and each state decides who to cover and what services to pay for."
Sixty percent of respondents to a Kaiser poll rejected block-granting in favor of leaving the current system unchanged, whereby it is the "federal government guaranteeing coverage and setting minimum standards for benefits and eligibility."

Reagan tried to block-grant Medicaid in 1981 and failed. Clinton vetoed similar legislation that Congress had passed in 1995. Nobody has had to vote on anything to accomplish block-granting of Medicaid in Hawaii.

Even now, Hawaii is accepting bids for new state Medicaid contracts, and Wellcare and Unitedhealth are expected to be bidding. The Governor acknowledged last month knowing of the mounting list of complaints filed with federal regulators (CMS, the Centers for Medicare & Medicaid Services) against the State as well as Unitedhealth. He blamed the contract, which he inherited (true), while turning the entire Medicaid appeals process over to the same state bureaucrats already caught lying to federal regulators.

This is not over-dramatizing. CMS has caught DHS lying to them about my daughter at least twice. Rumors have it that Unitedhealth even lied to the state about losing a circuit court appeal that was actually won by one of the medically fragile children.

At the beginning of the year, CMS investigated DHS and Unitedhealth for Medicare fraud in Hawaii. The company was targeting what are called "dual eligibles", adults with disabilities who qualify for both Medicaid and Medicare. Every time the company signs up a new individual for Medicare, they are paid a bonus. A company employee made an appointment to see a severely disabled young man on Kauai, as a representative of Unitedhealth Medicaid. He was actually from Unitedhealth Medicare, and never explained to the family the purpose of the paperwork he had them sign. They only discovered it when prescriptions and services began to be denied, leading to such a severe deterioration in his condition he now requires dialysis three times a week.

It is not just Hawaii. Florida has passed legislation mandating the state's entire Medicaid population enroll into the same publicly traded companies already found embezzling from the state. Texas is also on the verge of mandating everyone on Medicaid join a managed care organization, among which will be the top publicly traded corporations.

Parents of children with disabilities in New Jersey recently received letters requiring them to sign up for Medicaid from one of four companies. Two of them were Unitedhealth (they also do business as Health Net of New Jersey), and a third was Amerigroup, another publicly traded company caught stealing from children.

The companies themselves make it difficult to track membership and revenues. Several companies do business under different names, with Unitedhealth needing thirteen pages in their year end SEC filing to list all the company aliases. I found the same publicly traded companies reporting themselves to CMS under two different categories (commercial or non-commercial), making official Medicaid statistics somewhat unreliable.

In last week's $150 million Medicaid fraud settlement, Tony West, assistant attorney general of the civil division of the U.S. Department of Justice, stated “This type of fraud uses patients as pawns in a game of corporate greed that puts cash over care, running up the bills on the very people our public health care programs are supposed to benefit."

Wellcare's $137 million Medicaid fraud settlement announced in May has not yet warranted a DOJ press release, let alone such passionate rhetoric.

In June, 29 Republican governors signed a letter to Congress asking for increased control over Medicaid budgets, supposedly to help balance local state spending.

An August letter from CMS to State Medicaid Directors contained the White House response. The governors had demanded a way to get out from under Medicaid access and participation ("maintenance of effort") requirements established first under the Recovery Act and then under the Affordable Care Act. The CMS response provided detailed instructions in how states could ignore these inconvenient regulations, removing one of the last obstacles to block-granting Medicaid out to publicly traded corporations.

Should these companies be considered "too big to fail"? How do you weigh shareholder profits against how I felt after waiting ten years for Hannah to give me my first hug?

Please sign our petition, take our poll, send a letter to your newspaper and congressional representatives. This enslaving of our country's most medically vulnerable people to corporate profits needs to end.

Families to Hawaii's governor: Yes, you have failed

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Families of children with disabilities have reacted strongly to the August 22 meeting with Governor Abercrombie. The letter below was written the day following the meeting.

Dear Governor Abercrombie:

We are families whose lives have benefited from Hawaii’s Insurance Commission external review system.
The format of yesterday’s conference did not enable all of us to speak. Many of us made the extraordinary effort to meet you in June, but you did not attend.

You said yesterday that:

“I think it’s fair to say that people felt that the review panel process in place kept the insurance companies in check, and on the whole they were able to get services that they wanted to have.

The two avenues available, the Department of Human Services hearing process or the 3-person panel, and I think most people went for the 3-person panel, and felt that was satisfactory. Nobody was arguing with that, least of all Suzie or Roz or myself or for that matter the professionals at DHS, that is to say those that were left after the ranks had been decimated over the last years.”

Please explain to us: if this is so, why did you sign a bill that deprives everyone on Medicaid of this process? The U.S. Dept. of Health and Human Services did not disapprove our existing process for Medicaid members, which is not an issue with the ACA. In fact, it expressly approved the inclusion of the 3-member panel option in the RFPs for QUEST and QExA (and we have not seen anything showing that DHHS approved revoking this option).

You said the denials of services that threaten the lives of our families are just “glitches.” You said the on-going regulatory violations we are experiencing are to do with the contractor. You said that if we needed a lawyer to dispute a denial, that means you are failing.

I regret to inform you that you are failing. Based on Insurance Division statistics, the number of cases filed since you took office nearly equals the number filed in the last 10 years. In fact, since you took office, over 20 cases have been filed in the external review and won by QUEST or QExA members against Evercare and HMSA QUEST. Some of those cases were previously denied by the Administrative Appeal and even had Legal Aid assistance. Apologies for failing, promises to do better, and an uncertain plan of assistance, will not help those more than twenty families as certainly as the external review did. The health plans are the only winners under SB1274.

Most of us are, right this minute, depending on a lawyer for our lives, and the lives of our children. We are in the midst of “glitches” that have spanned months, if not years. We have all experienced the failure of the DHS review system, including their failure to monitor the contractors for federal compliance.

We appreciate your intentions, but your proposals on Monday did not meet our concerns. In fact, they left us terrified for our futures and angry that you could belittle our life-and-death battles with the insurance plans as mere “glitches.” We will not rest our efforts until we have a system we can count on to prevent health plans from running over us and our children.

Son-of-a-glitch: Abercrombie defends turning state’s disabled population into second class citizens

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On August 22, Governor Neil Abercrombie admitted that the purpose of SB 1274 was to save the state’s Medicaid contractors money on legal fees. He never explained how that would benefit patients.

SB 1274 deleted part of the state’s Patients Bill of Rights, depriving Hawaii’s entire Medicaid population (270,000) of access to the protections of federal law.

The Governor suggested numerous creative alternatives to legal counsel: “civilian public defenders,” “ombudspeople”, a new commission, even getting federal money to hire a patient advocate. It was clear that no work has been done on any of the ideas to replace the lawyers who have the expertise to interpret coverage contracts and to apply the law to a patient’s individual circumstances.

Just no lawyers. Unless of course the family has the money to spend on hiring one themselves.

The meeting was ostensibly to “reassure” families and advocates for the state’s disability population, in the aftermath of his signing of SB 1274. Abercrombie stated “I am failing” if anybody in Hawaii needs a lawyer to enforce their civil and legal healthcare rights.

On August 24, a Circuit Court decision was handed down against Evercare (Unitedhealth), proving even children in Hawaii need a lawyer in order to enforce civil rights under the ADA.

This is the second time since June the Circuit Court has ruled against Evercare. Both cases revolved around Unitedhealth’s cuts in benefits to medically fragile children, where percentage savings translate into thousands of dollars per month each.

Both children were fighting for the right to live at home with their families and not be put in institutions. But for their right to have a lawyer, neither child would have won.

But all this, according to Abercrombie, is just a “glitch.” No need for lawyers.

Also on August 22, Dr. Kenneth Fink, Hawaii state Medicaid Director, acknowledged in writing to the parent of one of these children that Evercare had violated federal confidentiality laws. This is the fourth such letter parents have received from Dr. Fink in less than a year.

Meanwhile the state has been unable to produce proof of Abercrombie’s statement that it was made “explicitly clear to [him] by the United States Department of Health and Human Services that the external review process we had in place did not meet the Affordable Care Act requirements.” This was a crucial ground for signing the Bill instead of vetoing it.

Supporters of the bill had tried to argue it was necessary in order to comply with an Affordable Care Act deadline of July 1. On June 21, the Governor’s office admitting to having had no contact with federal authorities on the issue, and later that week the deadline was extended to the end of the year. Nonetheless, now the Governor says there is a letter from DHHS.

Rafael del Castillo, healthcare rights attorney, asked the governor’s office following the meeting for a “copy of the DHHS correspondence explicitly stating that our existing external review is unacceptable.”

The meeting was two weeks ago, and he has received nothing to date. A recording of the meeting can be found here.

The impact of SB 1274 has been eerily similar to that of the White House-backed amicus brief submitted to the Supreme Court in May.

There is something called “Federal Sovereignty.” This means that federal law is the “supreme law of the land”, and states cannot limit legal rights allowed under federal law.

In his analysis of the amicus brief, Simon Lazarus of the National Senior Citizens Law Center explained that “the rule endorsed by the DOJ brief, [carves]… safety net laws and beneficiaries out from the protection of [the] Supremacy Clause."

That is pretty much what SB 1274 has accomplished: carving out Hawaii’s Medicaid population from the protections of federal law.

Abercrombie painted the concept of turning everyone on Medicaid into second class citizens in rosey terms. He had to sign SB 1274, he said, in order to prevent federal regulators from reducing the state’s “flexibility” and “opportunity to experiment” with people’s lives.

Why the state suddenly needs to experiment with a healthcare appeals system that has functioned appropriately for more than a decade, was not explained.

The crux of SB 1274 was to repeal a state law enabling patients to challenge health insurers’ denials of care, and to be represented by an attorney in the process. The law required health insurers to pay the legal costs of the patient’s appeal when the company refuses to approve medical treatments ordered by a doctor. Back in April, Unitedhealth’s attorney openly told a TV reporter that SB 1274 needed to be passed because this "existing process is expensive, time-consuming and burdensome... just adds to the cost of healthcare when we [Unitedhealth] can ill-afford it."

What she failed to add was that her client, Unitedhealth had over a dozen cases pending against it. As of this writing, she and Unitedhealth have lost every case ever filed against it under the patient rights law she said needed to be repealed.

By April, information surfaced that the bill was actually a way to change the federally approved contract between Hawaii and two specific Medicaid contractors, Unitedhealth and Wellcare. The current contract mandates the two companies follow state law, something they knew when the signed the contracts.

The problem with privatizing Medicaid is that, once these companies get control of the system, they can start demanding modifications in their contracts. The State is in a weak position to resist because it has gutted its social service infrastructure, essentially disabling itself. Unitedhealth and Wellcare decided they do not like being told what to do by successful patients and their attorneys, so they insist on the state finding a way to get rid of the law. That way, their Medicaid premium profits are safe from needy patients who have the power to enforce their rights because their legal fees are paid.

My daughter Hannah is another medically fragile child who has needed a lawyer to protect her from the harm caused by Unitedhealth. During the meeting on August 22, the Governor promised someone would call me about the “glitches” and “logistical problems” plaguing Hannah’s medical care.

There have been no calls. Just another glitch?

Medicare already 45% privatized, Medicaid could reach 30% by year's end

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The privatization of Medicaid could hit 30% by the end of 2011. Medicare's privatization has already reached 45%.

The so-called Republican war on Medicare and Medicaid was already won a couple of years ago, and the battles waged so publicly now are, in large part, a public relations diversion.

What the Republicans, and apparently the President, don't want us to see is is the amount of government health care funds - between $2 billion and $5 billion every month - that this privatization has diverted to shareholder profits.

That money could be used instead to fund anywhere between 400,000 and 1 million full time jobs in local communities across the country. Every time one of these publicly-traded companies cuts the benefits it pays out, it means jobs have been lost as nurses, home attendants, adult day care, and a host of other local companies that provide equipment and services to the disability community. Meanwhile states have been able to cut their accounting, social work, quality control, regulation monitoring and other positions when the HMO takes over these jobs as part of its contract.

Figures published by the Commonwealth Fund, combined with Securities & Exchange Commission (SEC) filings, show the percentage of people receiving Medicaid who are signed up through publicly traded HMOs has gone from 19.6% in 2009 to 27.1% as of June 30, 2011.

New contracts coming into play this year will add at least 1.7 million new people, bringing privatization to 29.8%. The Affordable Care Act is expected to raise Medicaid enrollment by 16 million by 2019, and the Commonwealth Fund concluded that "given recent patterns in state contract awards to managed care plans, it is reasonable to anticipate that plans operated by publicly traded companies will enroll the majority of the expanded Medicaid population."

Of the 47 million signed up for Medicare, 21 million are enrolled in publicly traded HMOs. When compared against the total population of just Medicare's managed care and stand-alone drug benefit, that 21 million becomes 71% of the total number of enrollees in those programs.

We obviously cannot count on our elected officials to stop this insidious process by themselves. They aren't even telling us about it. Please sign our petition demanding legislation to take private profits out of Medicaid and Medicare.

Stopping the privatization of Medicaid and Medicare: Create jobs not profits

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This country is in desperate need of legislation to halt the privatization of Medicaid and Medicare.

It is already costing taxpayers $11 billion a month in a subsidy or bailout or whatever you want to call it, that no one has voted on, and is the driving force behind a civil rights war going on right beneath our noses.

Throughout American history, every minority has won its equality through speaking up on is own behalf. The reason nobody knows about this particular civil rights war, is this time the minority cannot speak for itself.

They are our medically vulnerable of any age, those who because of time or disability would be living in institutions if not for Medicaid. Eighty-six percent of the national Medicaid budget is allocated for their care, to pay for the treatments and services to keep our loved ones at home with their families, or in the communities of their choice.

It may be budgeted for their care, but if it's paid to one of ten major for-profit HMOs, anywhere between twenty and fifty (or more) percent is taken out as a sort of middleman fee.

For our families, these cuts translate into reductions of sterile medical equipment, denials of anything from diapers to wheelchairs to communications devices, and reductions in those very services we need in order to keep our loved ones out of institutions. We sacrifice sleep, jobs, friends and the ability to multitask to try to compensate for cuts that were made to raise company profits.

Legislation imposing a 95% health benefits ratio (the percentage of the per person per month premium the HMO receives that is spent on actual health benefits) will do no good. The Administration effectively acknowledged the power of the criminal culture grown up around these HMOs when they gave Wellcare a "get out of jail free" card in April. No expenses they report themselves could ever be trusted.

The best legislation may be to outlaw capitation payments. Go back to a simple fee-for-service program; after all, it worked fine for forty years. All the county and state workers who lost their jobs when the HMO took over can be hired back. These are the people who are best capable of managing the care of someone who is medically vulnerable anyway, not employees of a for-profit HMO.

If the state goes back to writing the checks (more jobs), we eliminate the profit motive, while pumping $11 billion a month into local communities. That could translate into between 400,000 and 1 million jobs across the country. Every time a nurse is hired, a child or grandparent with disabilities is given forty hours a week of home nursing services, something that literally can mean the difference between life and death.

That could also be seen as a million jobs across the country that have been sacrificed in the past three years to keep profits up.

On my other website, I started a survey in January looking for information on how well states were adhering to federal Medicaid regulations. Not adhering means violating, right? While the sample remains small, every state represented so far is violating one federal regulation or another.

Yet the Supreme Court will soon be considering whether anyone signing up for Medicaid should forfeit the right to "federal Supremacy", turning about 50 million people immediately into second class citizens. The White House has also backed a series of proposed Medicaid regulations that implement this anti-regulation of the human and civil rights of our elderly, our adults and our children with disabilities.

Why isn't it child abuse to steal money intended to be spent on keeping children home with their families? Since when can the government abdicate regulatory control over the recipients of federal funds?

Millions like my daughter who have no ability to speak out in support of their own civil rights, are watching control over their life-and-death decisions being sold off to for-profit HMOs.

The first step to stop this insidious destruction of the human rights of the weakest members of our society is to let Congress and the President know that we know what they have been doing without the voters' permission. It is not over-dramatizing to say people have already died, and will continue to do so, until legislation takes the profit out of Medicaid and Medicare.

Please sign our petition here. With the pending Supreme Court decision, and final versions of those proposed new regulations coming up this fall, we need your voice now to help speak up for our children, those who will always be our children and those to whom we were children.

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

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.

Do you know your child may qualify for Medicaid based on their disability?

Over the years I've lurked around more internet discussion groups of parents whose kids have similar medical problems than I can remember. One of the things that I've noticed far too frequently is that parents frequently aren't aware that their child can qualify for Medicaid (and hence for EPSDT) all of their own. Every state has what are called Medicaid Waiver Programs. This is a wonderful website where you can look your state up and get the contact information for every waiver program offered in your state. The figures are from 2005, but it gives you a great jumping off point to find out what to look for on your own state's website. Waiver programs don't look at the income and assets of the family -- they only look at the income and assets of the individual. For kids with disabilities, each state has different programs, some including autism-specific programs. Don't assume that if you child qualifies for a Medicaid waiver program, somebody somewhere along the line would surely have told you so. Between the waiver programs and EPSDT, if your child requires skilled care, your child will get it. If they need nursing, they get skilled nursing. If they need a full time attendant, they will get it. Whatever a doctor says is medically necessary for your child, your child will get it. That isn't to say that the state is going to hand you the services as soon as you ask for them. But the start is knowing that your child is entitled to them. The process of fighting for them is worth the effort, because nobody can tell you how far your child could progress if they really truly received all the services they need.