Wednesday, December 30, 2009

Law School 101: Federal law trumps state law

The basic tenet is that Federal laws and regulations supercede state laws and regulations, and that the Constitution supercedes Federal Law.

If it's a right that comes from the Constitution, then it's a civil right.  Civil rights laws forbid discrimination on the basis of age, race, religion, sex and disability.  No matter how inconvenient some of these civil rights might be to state governments, they can't take them away from you.

If it's a right that comes from Federal Law, then it's a legal right.  States also cannot legislate to restrict your legal rights. 

EPSDT is a legal right children under the age of 21 have to all the services that are "medically necessary".  These services are listed and mandated under section 1905(a) of the Social Security Act.  You can't get much more Federal that that.   States can spend their EPSDT funds in different ways, such as through the Department of Education in addition to the Department of Human Services (Medicaid).  But if your child's treating provider says something is "medically necessary" for your child, then, regardless of whether it is a normal Medicaid service in your state, the state is supposed to provide it.

The idea that a treating doctor might know more about what is medically necessary for a child than a state bureaucrat in charge of the budget has been the proverbial thorn in the side for states like Hawaii.  States across the country have been spending millions of tax payer dollars fighting and losing legal battles to restrict spending on people with disabilities, children in particular. 

Other states, again like Hawaii, are violating the Constitutional right people with disabilities have to receive the services needed for them to stay at home with their loved ones.  Study after study have shown it's cheaper in the long run than throwing everyone into institutions, not to mention the civil right is not to be forced into an institution because of lack of home services.

It's not like the states don't have the money to do this.  In fact, the states have all received hundreds of millions (if not billions) of stimulus funds that could easily plug any budgetary holes in services for the elderly and disabled.  It's not taking any money away from anyone else, since the Recovery Act states the funds can only be spent on Medicaid.

But back to the issue of "medical necessity".

Back in 2004, a federally funded pamphlet aimed at the parents of kids with disabilities noted that

States have the right to review a provider’s decision, and it is
not uncommon for providers and Medicaid agencies/HMOs to disagree on what
is medically necessary. However, several courts have found that states must
defer to the doctor’s opinion in treating patients.

In August 2009, the CMS (Centers for Medicare and Medicaid, the federal Medicaid regulatory agency) wrote in a letter to Idaho

Any service required as a result of an EPSDT screen and which is currently covered under the scope of the Enhanced Benchmark Benefit Package will not be subject to amount, scope, and duration limitations, but will be subject to prior-authorization. The additional service must be documented by the attending physician as medically necessary and that the service requested is the least costly means of meeting the recipient's medical needs. Preauthorization from the Department or its authorized agent will be required prior to payment. (my emphasis)

Two more federal rulings have just come down in Georgia that state in no uncertain terms that the role the state plays in determining "medical necessity" is limited to ensuring the request isn't fraudulent.  The designated state Medicaid agency representative has the right to review the service and authorize it, but not to decide they know more about medical necessity than the treating provider.

the state may determine whether the physician’s diagnosis or prescribed treatment “was without any basis in fact.” Rush, 625 F.2d at 1157. Thus, the state may review an order of a treating physician for “fraud, abuse of the Medicaid system, and whether the service is within the reasonable standards of medical care.” Hunter v. Medows, Case No. 1:08cv2930-TWT (N.D. Ga. Nov. 3, 2008). See Collins v. Hamilton, 349 F.3d 371, 375 n.8 (7th Cir. 2003) (a state's discretion to exclude services deemed “medically necessary” by an EPSDT provider
has been circumscribed by the express mandate of the statute); Pediatric Specialty
Care, Inc. v. Arkansas Dept. of Human Servs., 293 F.3d 472, 480 (8th Cir. 2002)
(finding that a state must pay for costs of treatment found to ameliorate conditions
discovered by EPSDT screenings if such treatments are listed in section 1396d(a));
and Pereira v. Kozlowski, 996 F.2d 723, 725-26 (4th Cir. 1993) (“In section
1396d(r)(5), the Congress imposed upon the states, as a condition of their participation
in the Medicaid program, the obligation to provide to children under the age of
twenty-one all necessary services, including transplants.”).
The Federal judge in that case went on to say there was a "clear statutory intent that the
1989 amendment adding § 1396d(r)(5) took away a state’s discretion not to provide
necessary treatment
for individuals under the age of twenty-one." (my emphasis)

A second Federal decision issued in Georgia determined that cuts in home nursing services for a child violated that child's federal rights mandated by EPSDT. That was another example of the state Medicaid agency trying to say the state had equal decision making power with the treating provider over matters of medical necessity.

Nevertheless, Hawaii sees no reason to learn from any of these other costly trials, and is forging ahead with the old time claim that the state Medicaid agency can over-rule the recommendations of the treating physician.

I was very flattered recently when the Hawaii Medicaid Medical Director handed over the state's official written determination on "medical necessity" and stating there is nowhere "in the Federal and State rules that we can find allowing the treating physicians to be the sole determiners of medical necessity."

Flattered because the legalese document I was given was presumably prepared or edited by someone with a law degree.   It might even have been someone from the DC law/lobbying firm Hawaii has paid $3.5 million to for developing the state's Medicaid policy for the elderly, blind and disabled population.  I, of course, have no law degree, I'm just a mom. 

But I do know when a question is based on a false assumption. 

I can't show them a citation where federal law gives anyone other than the treating provider decision making rights over medical necessity because no where do these federal laws give any rights to anyone except the individual with the disability.  It's the individual with the disability who has the Constitutional rights to services that enable he or she to remain out of an institution, and federal legal rights to receive the medical care their treating providers say is necessary. 

The state can't restrict rights granted under federal law. Federal statutes give the states no more than the right to ensure the request isn't fraudulent, not to make a medical decision on behalf of the individual.

I find it interesting that CMS has been trying to get Hawaii to conform to federal Medicaid regulations since last August, and here the state is, four months later, still trying to justify violating the legal and constitutional rights of our elderly and disabled citizens. 

If the state remains on this course, I have to wonder how much more tax payer money will be spent on private attorneys before the issue is settled.  Meanwhile, the two for-profit insurance companies running the Hawaii Medicaid program for the aged, blind and disabled are slashing services and crying poor to the state.  I've already written about the large profits both companies managed to make while they were apparently losing money providing services in Hawaii. 

So the lawyers and the insurance companies make more money, while the actual population covered by federal Medicaid law suffers.

Tuesday, December 29, 2009

Are DC lobbyists being paid to advise Hawaii on how to violate federal Medicaid law?

A Washington, D.C. law firm, Covington & Burling, appears to have been paid more than $3 million (as of December 2008), for consulting with the state on its Medicaid QExA program.

All of the contracts appear to have been issued with exemptions from the normal procurement process; in other words, they all appear to be no-bid contracts.

Contracts have been issued in the name of Charles Miller of Covington & Burling, making him a "Special Deputy Attorney General" for Medicaid issues.  Those were issued by the state AG's office, and total $850,000 (of which $375,000 was to be paid through Federal funding).

The remaining contracts were all issued through the Hawaii Department of Human Services.  The contracts that I've located begin in December 2003, and the final one is an extension through December 31, 2008.  Since the latter contract mentions services will likely be needed to extend for several months after the February 1 QExA implementation, I suspect there may be another additional contract that I haven't been able to find.

Part of Covington's responsibility was to "provide strategic advice, consultation, project management and technical assistance on issues and policy decision as needed."  "Covington & Burling is well-established among Medicaid programs nationwide as an expert in the area of Medicaid program structure, compliance, and federal revenue maximization."

My question then is what role Covington has played in the ongoing discussions between state officials and federal Medicaid regulators.  The purpose of the discussions is to resolve potential violations of federal Medicaid law (including EPSDT).  Since Covington is a nationally known expert in Medicaid policy, it seems possible that they are advising the state on this issue.

What a waste of money, in my opinion.  Legal battles have already been fought across the country over Medicaid "policy" issues such as EPSDT, the concept of "medical necessity", and the rights of people with disabilities to remain at home with their families as opposed to institutionalization.

And as with Evercare and Ohana, presently crying poor to the state and asking for more money in their contracts, Covington & Burling overshot their estimate of $750,000 for one project by $1.25 million.  That contract had to be increased to $2 million as a result.

Is it possible that Hawaii is paying this firm to justify Hawaii's policy decision?  Just this week, Dr. Anthea Wang, Medical Director of Hawaii Med-Quest, sent me a document with the official DHS opinion on who decides "medical necessity", and says it's been signed off by the Policy folks.  Would that include anyone from Covington? 

How much money does the state of Hawaii want to waste trying to figure out how to avoid following federal Medicaid regulations?  The language is there to be followed, in recent (the past six months) regulations and official documents published by the federal Medicaid regulatory agency.  The money is probably even there, considering Hawaii's projected budget deficit through 2011 is about equal to the amount of additional stimulus funds the state is receiving.

The problem is the funds are being spent on lawyers and profits for private insurance companies, not on services to our elderly and disabled populations.

Here are links to the five contracts I found:

Monday, December 28, 2009

Hawaii -- deficit plus stimulus funds shouldn't equal a bigger deficit, should it?

The Honolulu bureau of the Associated Press ran a great article a week ago on the impact Hawaii's $1 billion budget deficit was having on education and others in need.

According to the official web site for the American Recovery Act, which tracks the money going out to the states as well as what the states admit to having, Hawaii reported receiving $811.9 million by October 30, 2009. 

The feds say they've awarded Hawaii $1.2 billion in contracts, grants and loans.  Over $1 billion of that is in grants.  One source I found said Hawaii had only received about 40% of the funds, but it's approved. 

Not to mention that the $1 billion projected deficit is by 2011, and we're talking money in the bank now with lots more on the way.

I've asked CMS (the Medicaid federal regulatory people) about this and have been met with evasive responses.  Having personally lived in Washington D.C. for 8 years, I can tell you that evasion from government employees is not a positive indication.

So with education being cut by a day a week and elderly and disabled people being threatened with institutionalization, what's the money being spent on?

Where is the Money Going?

Where is the Money Going? Hawaii receipt of stimulus funds

Thursday, December 24, 2009

Happy Holidays from Hawaii Medicaid: When $2.5 billion isn't enough

Apparently the almost $2.5 billion that Hawaii agreed to pay to UnitedHealth and WellCare in exchange for providing care for the state's disabled and elderly just isn't enough.

Less than a year after the two companies (UnitedHealth as Evercare and WellCare as Ohana) took over the state's Medicaid program that allows the elderly and disabled to stay in their homes, they're reportedly crying poor to the state.  All the actuaries screwed up.  The state has to renegotiate the contracts.  Woe is us.

And to prove it, they're slashing budgets from every which way.  Medically fragile children are having their nurses cancelled.  Quadraplegics are being told they can just sit at home by themselves all day and hope nothing happens.  Prescription medications are being cut to 21 day supplies, denied outright, or substituted by cheaper drugs that can worsen what they're supposed to be treating.

Hawaii's Attorney General's office has been investigating since September if WellCare is trying to defraud the state and a local quadraplegic man.  UnitedHealth admits outright they are in discussions with the state on how to weasel out of EPSDT's definition of case management on the basis of the state's 1115 Medicaid experimental project.  

In August, Federal regulators began discussions with Hawaii officials over potential violations of federal Medicaid law.  The DHHS Office for Civil Rights has been aware of the situation since July, and supposedly is now monitoring it directly from Washington, D.C.

Yet nothing has happened.  Families are spending the holidays wondering if they're going to have to institutionalize their child or parent or sibling so that UnitedHealth and WellCare can make a big enough profit.

I did a rough calculation of the profit off the top of the two contracts, and it comes to about $203 million over three years.  For a sense of comparison, the entire state budget for home services in FY2007 was only $140 million.

That doesn't include profits built into sub-contracts with wholly-owned subsidiaries.  Those end up disguised as direct medical payments in the budget so the 8% profit off the top includes 8% of the profits made by these subcontractors.

Apparently their budget woes in Hawaii aren't affecting the rest of UnitedHealth's and WellCare's contracts.  Both reported increased profits for the three months ending September 30, 2009 accompanied by increases in Medicaid and Medicare state contract clients.  UnitedHealth had third quarter revenue of over $21 billion, WellCare of $1.67 billion.

Meanwhile, UnitedHealth paid out over $405.7 million in fines in 2009 and WellCare paid $80 million in restitution to Florida in May and another $10 million to the SEC.

That doesn't even begin to touch on the subject of how much of Hawaii's federal stimulus funds that could only be spent on Medicaid (almost $175 million received as of December 4 with more on the way) are being directed towards the two companies.  If UnitedHealth and WellCare getting their standard 8% of off that, it's another $14 million. 

Nobody, including the state legislature, seems to know what's happened to that money.  I've gone so far, personally, as to ask CMS (the federal Medicaid regulatory people) how Hawaii is spending its Medicaid stimulus funds since its slashing budgets to the point of violating the ADA and federal Medicaid law.  They said they'd find me somebody to talk to, but haven't yet.  Rumor has it that it's a sensitive topic in Washington, which tells me Hawaii probably isn't the only state potentially violating civil rights and federal law by cutting services to disabled children, cognitively or physically impaired adults and the elderly.

A happy holiday it isn't.

Friday, December 18, 2009

How easy it is for a state to violate a child's legal rights

Two decisions handed down recently by a Federal Judge in Georgia could have a major impact on how our children are evaluated for and receive services.  It's a positive impact, that actually gives parents and caregivers, together with their childs' treating doctors and therapists, control over the decision-making process.

EPSDT (Early Periodic Screening, Detection and Treatment) has been around for years, providing all children on Medicaid under the age of 21 with any treatment a doctor says is "medically necessary."

But it's been an equally long process of court cases to convince states, often one by one by means of class action suits, to meet this legal requirement.

The two decisions in Georgia make it clear that decisions over treatment made by treating practitioners take precedence over state agency and/or contractor decisions that have no grounding in medical necessity.

The decisions also make it clear that EPSDT provides our children with a legal right that is "individually enforceable."  What that means is that any of us whose children have suffered harmful service cuts due to bureaucratic decision-makers can hold the state as well as any private contractors providing Medicaid agency services responsible and accountable. 

Here in Hawaii, we have a perfect example of how insidiously the state, and the two for-profit insurance companies contracted to provide EPSDT and Medicaid waiver services can violate our kids' legal rights.

First, there is a federal law (42 USC 1396a(a)43) that requires the state and its Medicaid delivery companies to make sure everyone eligible for EPSDT is educated on all the services they can receive through EPSDT. 

Hawaii's two for-profit health insurance companies, which signed contracts with the state worth together about $2.5 billion are Evercare, owned by Unitedhealth, and Ohana, owned by Wellcare.

Here is what Evercare has to say about EPSDT in their membership manual that is available online:

What are EPSDT services?
Children under 21 years of age may receive EPSDT services.
EPSDT services include shots and screenings that children
need to stay healthy. Your Service Coordinator can talk to
you about the EPSDT services your child needs and help
you schedule appointments.

Here is what Ohana tells its clients about EPSDT in their online membership manual:

EPSDT (Early and Periodic Screening, Diagnosis and Treatment) Well-Child Visits
Regular health exams for children. They are used to find and treat medical problems.

‘Ohana covers well-child checkups for all members from age 0 to 21. We want to make sure kids visit their PCPs at an early age. This is important for a child’s health later in life.

Neither manual meets federal legal requirements for EPSDT notification. 

Hopefully somebody will notice soon and do something about it.

Monday, November 16, 2009

CDREA posts DOH and DHS decisions that benefit Hawaii's disability community

The Children's Disability Rights Education Association (CDREA) yesterday posted information from two Hawaii  appeals hearings that hold out potential benefits for thousands of the state's QExA 1115 Experimental Project participants.

Both decisions were in response to an appeal made on behalf of a Kauai child against a unilateral 15% cut in her home nursing decisions that was to have gone into effect on February 1.  The cut was instituted against all participants in Hawaii's Developmental Disability 1915(c) Medicaid waiver program, regardless of need.

The written decision by the Hawaii Department of Health hearings officer may open the door for all services that were cut to be reinstated immediately.  The "informational note" by the state Department of Human Services" acknowledges the responsibility of the 1115 Experimental Program (QExA) to pay for assistive and augmentative communications devices.

UnitedHealth Group and WellCare Health, owners of the two for-profit health insurance companies providing all the Medicaid QExA services, have begun a new round of drastic cuts.

The cuts are severe enough to appear to violate Hawaii's contract with the federal Medicaid regulatory agency.  Yet the feds are doing nothing to stop this.

Sunday, November 15, 2009

CDREA publishes new CMS definitions of case management for kids with disabilities

The Children's Disability Rights Education Association (CDREA) has published an article on the latest definition of case management services issued by the federal Medicaid regulatory agency.

The broad scope of required activities that must be included in "case management", coupled with the role that the individual or their designated health care decision maker play in determining these activities, gives families more control over the services they need than ever before.

While the document in question related specifically to children covered by EPSDT (i.e., under the age of 21 and receiving Medicaid), similarly written documents have been issued that cover individuals of any age who receive Medicaid because of their enrollment in what's called a "Medicaid waiver" program. 

In the state of Hawaii, for instance, anyone currently enrolled in the state's QExA program, and therefore receiving their Medicaid services through either Evercare or Ohana, plus anyone currently enrolled in the states Developmentally Disabled waiver program, are entitled to case management services.

Wednesday, November 4, 2009

Hawaii's decimation of its aged, blind and disabled population worsens

Hawaii's two gold-digging for-profit insurance companies handling Medicaid have sunk to new lows. A Mom on Oahu got a call from her medically fragile son's Medicaid for-profit company. With no written notice, the company was downgrading her son from 54 hours a week of RN level nursing to 14 hours a week of a CNA. A little boy's life will be in danger beginning November 15, while no one knows what Hawaii Governor Lingle has done with the $154 million in stimulus funds she's received that can only be spent on Medicaid. The boy's services are provided as part of a deal Governor Lingle's administration negotiated with UnitedHealth Group and WellCare Health Plans for the two out-of-state, for-profit companies to take over medical care for the state's "aged, blind and disabled" populations. More than 37,000 people on February 1 were dumped from their pay-for-service Medicaid care into the merciless grip of UnitedHealth and WellCare, with no information from the state about this essential distinction in their care. As part of the negotiations, UnitedHealth and WellCare had to agree to make no cuts in home and community services for their 37,000 new clients for 90 days. After a Kauai mom filed complaints with the federal DHHS Office for Civil Rights and Center for Medicare and Medicaid Services (CMS, the division that regulates Medicaid), a wave of new cuts in August was halted. A little boy's life will be in danger as of November 15, when the final slash of 88% of his home care services takes effect. Where are our Medicaid stimulus funds? Background information on these two for-profit Medicaid managed care companies continues to be updated. Unitedhealth has paid out over $1.3 billion in fines, penalties and settlements to 9 states and their own shareholders since January 1, 2008. Their subsidiary Evercare was fired by the state of Texas in May, 2009. Fines and settlement just in 2009 include $536,000 to Missouri in August, $750,000 to Georgia in November, $457,000 to Colorado in October, $3 million to Texas in October, $630,000 to Texas in January, $350 million and a separate settlement for $50 million to New York in February. Yet on October 20, Unitedhealth posted a 13% increase in their profit from the same quarter a year earlier. The company's private plan membership dropped by 6%, but enrollment in its Medicaid and Medicare programs had increased by 14%. I'm not an economist but it seems that the aged, disabled and blind community is not unprofitable. We already reported Wellcare has paid out over $90 million in restitution and fines since May 2009. We recently learned that in February 2009, WellCare was ordered by the CMS to stop taking enrollment in certain of their Medicare plans. A letter from CMS to WellCare noted "WellCare was one of the overall worst performers among all plans,” and “WellCare’s complaints are three times the national average.” CMS kindly released WellCare from the suspension on November 4, 2009, in time for the company to participate in the federal open enrollment period. Also on November 4, "WellCare reported higher-than-expected third-quarter earnings Wednesday, swinging to a profit of $28.7 million, or 68 cents per share, from a year-earlier loss of $18.2 million, or 44 cents a share." Hawaii desperately needs an audit done of where the state's stimulus funds for Medicaid have gone if the companies running our Medicaid can make these kind of profits, while paying the sort of fines and settlements we've described, while at the same time cutting a toddler's home nursing services by 88%.

Saturday, October 31, 2009

Hawaii's "sacrifice" of its children becomes a national scandal that extends to the state's elderly and disabled

Hawaii's Governor Lingle's solution to balancing the state budget by cutting the school year by 17 Fridays has now attained the level of a national scandal. An editorial in today's New York Times notes that "Hawaii has sacrificed its own schoolchildren" who are now "learning a terrible lesson in how little their government and teachers think an education is worth." A week ago, US Secretary of Education Arne Duncan wrote in an opinion piece published in the Honolulu Advertiser that Lingle's "furlough Friday" plan was "inconceivable" and went on to note that Hawaii had already received $105 million in stimulus funds for education, and is scheduled to receive a total of more than $500 million for education. Today's NYT editorial notes that Hawaii "instead used the $105 million to cut its own contribution to education, which was legal but hardly admirable." I've been asking since June what Hawaii is doing with it's additional stimulus millions received for Medicaid. As of October 23, Hawaii has received $154 million that can't be spent on anything except Medicaid. The federal requirements for receiving Medicaid funds stipulated the money couldn't be put into any reserve or rainy day account. Hawaii's state medicaid director admitted the state used part of the money to pay back bills and put the rest into the general fund, but that was about $80 million ago. Every parent, caregiver and service provider in Hawaii that has any contact at all with the state's 'aged, blind and disabled' population can tell you that while these millions of tax-payer gift funds flowed into the state's bank accounts, Hawaii has been cutting Medicaid services by as much as 88%. These budget cuts are specifically targeted at the home and community-based services that enable our elderly, as well as adults and children with special health care needs, to remain at home with their loved ones. The cuts are being implemented by the two for-profit insurance companies that took over care of Hawaii's "aged, blind and disabled" population on February 1. We have the evidence to show that those two for-profit insurance companies are cutting services by means of constantly altering the scoring tools they use to qualify people for home services. A federal judge just stopped California from implementing Medicaid home services cuts because the scoring tools were being abused to the point of violating the Americans with Disabilities Act and civil rights granted under the Olmstead Decision. Meanwhile, we've just realized that Hawaii's Department of Education may be in violation of federal Medicaid law as well. The reverse opt-out letter the department sent to parents in December 2008 does not appear to meet federal requirements for Medicaid billing. I asked my daughter's school system for an itemized accounting of what they had billed Medicaid on her behalf over the past year on Monday, October 19. I asked to receive it by Friday, October 23. As of today, I still don't have it. What's the hang-up? If records were being maintained the way federal Medicaid law requires, then it should have been a relatively simple matter of sort and print. In February of this year, the Hawaii state auditor's office "revealed an organizational culture of disregard for ...procurement laws and rules" in the DOE's procurement office. The report noted "that culture has allowed office directors, managers, and staff to believe they have the discretion to unilaterally determine whether compliance ... is in the best interest of the department." As the parent of a child with disabilities, my experience has shown that same culture of disregard for the law extends to most of the contacts I've had with employees of the Department of Education, Department of Health and Department of Human Services. I filed complaints against Hawaii with the DHHS Office for Civil Rights and the federal agency that regulates state Medicaid programs and spending (CMS) in July and August. I know that CMS has had extensive conversations with state employees, but illegal service cuts affecting children with disabilities were happening as recently as yesterday. Hawaii isn't just sacrificing it's schoolchildren, it's condemning its entire population of children and adults with special health care needs. Children's lives are, literally, being balanced against company profits while state and federal officials turn a blind eye. If federal officials like the Secretary of Education can't get the state to behave legally, who will? If the federal office that regulates Medicaid can't get the state to behave legally, who will? When regulation fails, how long before enforcement steps in? Do we really have to wait for a child to die?

Thursday, October 29, 2009

Medicaid, IEPs and the right to case management services

What is Case Management Here's how the federal regulators of Medicaid recently (June 30, 2009) described case management services for an individual with disabilities:
we recognize the advantages of a team approach to case management services. For example, a lead case manager could coordinate resources and expertise from providers of medical, education, social, or other services for the benefit of the individual in developing a comprehensive plan of care and facilitating access to services. To facilitate this service model, States may set differential rates to reflect case or task complexity that would ensure sufficient payment to reflect the costs that case managers may incur in consulting with other practitioners.
For the parents and caregivers of people with special health care needs, dealing with all the different local, state and federal bureaucrats can be "the death of a thousand cuts." This definition entitles the people we're caring for to an individual (or maybe two) whose job it is to coordinate with all the different government departments -- Medicaid, EPSDT, Department of Education, Department of Health, Department of Human Services, Vocational Rehab -- plus the individual's doctors, therapists and service providers. Who is entitled to case management under Medicaid? Case management is a federally required minimum service to be offered by every state's Medicaid program for children under the age of 21 (EPSDT) (42 U.S.C. 1397jj). Case management is also required for adults and children with special health care needs who are participants in a Medicaid waiver program authorized under Section 1915(b) or 1915(c) of the Social Security Act (see 1915(c)(4)(B) and 1915(b)(1). In Hawaii, this would cover everyone who is still enrolled in the state's DDMR waiver program. And at least in the state of Hawaii, case management is a requirement for all 37,000 aged, blind and disabled individuals who are participants in the state's new Section 1115 QExA managed care program (see Chaper VI, section 28(c)(ii) of the document authorizing the creation of the QExA program). How to obtain case management services A 2004 government pamphlet aimed at explaining to parents how to use EPSDT includes instructions on how to obtain medically necessary items and services directly from your Medicaid provider. The process of obtaining individualized case management services should be as simple as giving your Medicaid provider a letter of medical necessity written by a physician or other appropriate medical or educational professional, and a doctor's prescription for the services. If you live in a state that adheres to federal Medicaid law, that should be it. If you live in a state that does not adhere to federal Medicaid law, or worse, has for-profit insurance companies interpreting federal laws, the process can be full of stress, frustration and never-ending delays. Case Management and your child's IEP Federal law requires "Medicaid to be primary to the Department of Education for payment of the health-related services provided under IDEA." More recently, the federal office that regulates Medicaid published the following in the Federal Register on June 30 2009:
Medicaid reimbursement remains available for targeted case management services and other covered services, which are included in an eligible child’s Individualized Education Program (IEP) or Individualized Family Service Plan, consistent with section 1903(c) of the [Social Security] Act.
A handbook published by CMS in May 2003, and re-ratified by the June 30 ruling, includes a list of services that are the responsibility of the case manager of a child under the age of 21. Some of these include:
  1. Making referrals for and/or coordinating medical or physical examinations and necessary medical/dental/mental health evaluations.
  2. Making referrals for and/or scheduling EPSDT screens, interperiodic screens, and appropriate immunization, but NOT to include the state-mandated health services.
  3. Referring students for necessary medical health, mental health, or substance abuse services covered by Medicaid.
  4. Arranging for any Medicaid covered medical/dental/mental health diagnostic or treatment services that may be required as the result of a specifically identified medical/dental/mental health condition.
  5. Gathering any information that may be required in advance of medical/dental/mental health referrals.
  6. Participating in a meeting/discussion to coordinate or review a student’s needs for health-related services covered by Medicaid.
  7. Providing follow-up contact to ensure that a child has received the prescribed medical/dental/mental health services covered by Medicaid.
  8. Coordinating the delivery of community based medical/dental/mental health services for a child with special/severe health care needs.
  9. Coordinating the completion of the prescribed services, termination of services, and the referral of the child to other Medicaid service providers as may be required to provide continuity of care.
A parent or caregiver can apply to their Medicaid provider directly for a case manager, and expect all these services to be provided for their child. These services could also be provided by the school, which will then bill Medicaid for the services, and for the administrative time spent arranging for them. In 1979, Jimmy Carter formed the first federal Department of Education. In the 14 months between then and the change of Administration in January 1981, the DOE published a blueprint for how schools and Medicaid should work together for the benefit of the student.
Coordination of all services -- outreach activities, screening programs, treatment, and follow-up services -- should be emphasized between school health and other health care providers, and social agencies in the community, to avoid duplicating efforts, increasing costs of services and adding further stress to the child and family. A means by which one care plan, if at all possible, can be used as a principle vehicle for monitoring the provision of services is a priority area for action... Schools should develop a plan ...[to] determine the extent to which health services are being provided, and the degree to which coordination of services between EPSDT and other programs is taking place.
For any child on Medicaid, the IEP should be a single document that incorporates all the services a child receives, whether from DOE, Medicaid, a Medicaid managed care company, or private organizations. And that IEP needs to include the case manager who will coordinate all the services being received. Who can NOT be the case manager? Federal law [42 CFR section 441.18(a)(6)] prohibits "providers of case management services from exercising the agency’s authority to authorize or deny the provision of other services under the plan." This means that the people at Medicaid who authorize and deny Medicaid services cannot also provide case management services. In Hawaii, for instance, UnitedHealth Group and WellCare Health Plans, which authorize and deny services for their Medicaid participants, cannot also provide the case management services for these participants. It would be a conflict of interest.

Sunday, October 25, 2009

CDREA calls for Hawaii state audit of DOE spending of Medicaid funds

Children's Disability Rights Education Association President Summer Harrison and Vice President Linda Nuland-Ames on Thursday called for a full state audit of Medicaid spending by the Hawaii Department of Education. Harrison and Nuland-Ames were at the annual Kauai DD Committee Legislative Forum, presenting the results of their past several months of research into Hawaii's Medicaid programs. The subject of the DOE furlough Fridays, the first of which was due to happen the next day, came up. Harrison pointed out that DOE services that were paid for by Medicaid could still take place on Fridays. Harrison had established that her daughter's paraprofessional service through Nursefinders was likely a Medicaid financed service since it was to continue on the furlough Fridays. Nuland-Ames asked how many parents at the meeting knew that DOE could bill Medicaid directly on behalf of their children. No one was. A few years ago, Medicaid told inquisitive parents that it wasn't any of their business, Nuland-Ames noted. Within the past week, Harrison had contacted her daughter's school to demand an accounting of all services and items billed to Medicaid by DOE on Hannah's behalf. She asked for the accounting by Friday, October 23. Her district office emailed to say she would be hearing from someone, but as of the writing of this post, still hasn't responded. Some but not all parents remembered the letter they had received from DOE in December 2008 stating that failure to return the letter would be permission for DOE to bill Medicaid on their children's behalf. According to research done by CDREA and published on their website, it would appear that the Hawaii DOE letter meets none of the federal requirements for parental notification of and permission for DOE billing of Medicaid on their child's behalf. Harrison reminded the state legislators in attendance of the Hawaii auditor's report on DOE's procurement office, published in February 2009. The auditor's office
revealed an organizational culture of disregard for procurement rules in the Office of School Facilities and Support Services (formerly known as the Office of Business Services and referred to herein as the “Office of School Facilities”). That culture has allowed office directors, managers, and staff to believe they have the discretion to unilaterally determine whether compliance with procurement laws and rules is in the best interest of the department.
She pointed out that while she didn't know if any Medicaid billing went through the procurement office, or if that was done someplace else in DOE, the fact that the schools couldn't give a parent an accounting within five days raised concerns. Given the current economy, the public furor over furlough Fridays which are intended to help the governor balance the state budget, and the issues raised about Hawaii's two for-profit Medicaid companies, CDREA's request for a state audit of DOE use of Medicaid funding was met favorably.

Saturday, October 24, 2009

CDREA presents results of its fact-finding investigation into Hawaii's Medicaid Managed Care program

On Thursday, the Children's Disability Rights Education Association presented the results of its investigation into Hawaii's Managed Care Medicaid system at the annual Kauai DD Committee Legislative Forum. Here are some of the highlights of that presentation. Background On February 1, 2009, about 37,000 people on Medicaid in Hawaii lost their right to freedom of choice in their medical care, as their Medicaid care changed from a "fee for service" plan to an HMO, known as a Managed Care Organization or MCO. Two for-profit, out of state companies were awarded the contracts: UnitedHealth Group operating under the name of Evercare, and WellCare under the name of Ohana. UnitedHealth is headquartered in Minnesota, and WellCare in Florida (Ohana is a subsidiary of WellCare of Arizona which is itself a subsidiary of WellCare Health Group). Economics of the transition *While Hawaii transitioned its Medicaid program to the two out-of-state corporations, the state retained 72 employees who moved from the Department of Health to the Department of Human Services (per the state's March 2009 amended budget). Rather than providing direct services, these employees are now charged with overseeing Evercare and Ohana, so overhead was not reduced. *Hawaii's Medicaid budget, which used to pay for state employees and their benefits in addition to medical payments, now pays for state employees and their benefits, all the administrative costs (salaries and benefits) of each of the two private for-profit companies that have been hired to provide Medicaid, all the administrative costs of the for-profit sub-contractors that both contractors hire to perform specialized services like medication authorizations or travel, the profit margins for each of the contractors and sub-contractors, and, with what's left over, medical payments. * The second quarter of 2009 (April, May, June) represented the first full quarter of UnitedHealth Group taking over its portion of Hawaii Medicaid. This is also the quarter that Texas fired Evercare. The company reported a profit margin for that quarter of 3.97%. *Also for the second quarter of 2009, WellCare posted a profit margin of 2.07%. *If Hawaii's current Medicaid budget was, say, $1.2 billion, and between them, UnitedHealth Group and WellCare are skimming about 3% off the top, that means about $36 million a year is heading straight out of Hawaii to Florida and Minnesota, before anyone goes to work for the day. *If, for instance, Hawaii's portion of the revised Federal matching rate (FMAP) was between 25% and 35%, depending on the program, then about $22 million of that $36 million is coming from Federal funds supplied by American tax payers, and includes Hawaii's stimulus funds. *The transition to Hawaii's two for-profit managed care companies has done wonderful things for the profit margins of both UnitedHealth Group and WellCare but is losing the state millions of dollars worth of jobs and services every month. A little about Evercare and UnitedHealth Group * Evercare was fired by the Texas Health and Human Services Commission on May 31, 2009. After receiving 1300 complaints in Evercare's first year of operation in Texas, the company was fined $630,000 earlier this year and instructed to fix a variety of service delivery and payment problems. According to the Dallas Morning News, it was "with limited success." *UnitedHealth reported its net income for the third quarter of 2009 was 13% higher than it was for the same quarter a year ago, due primarily to the growth of its Medicaid and Medicare contracts. *A December 2007 article in UHG's hometown newspaper reported the insurance megacompany had paid out $18 million just in claims-related penalties to 38 states. *In January 2009, UHG paid out settllements of $350 million to the American Medical Association and another $50 million to the state of New York . *A research company that is wholly owned by UnitedHealth, Lewin Group, is producing statistics that leaders against health reform keep citing as "independent" and "nonpartisan". *UHG paid a settlement of $895 million in a class action suit brought by its own shareholders. A little about WellCare Health Plans *WellCare, which receives 99% of all income from Medicaid and Medicare programs in 18 states, the District of Columbia and Puerto Rico and has no private policy business, reported a whopping 69% increase in its net income for the second quarter of 2009 over the same period of 2008. *In May 2009, WellCare paid the state of Florida $40 million in restitution PLUS $40 million in penalties for defrauding the state's Medicaid program, and particularly their children's Medicaid program. *Also in May 2009, WellCare paid $10 million in civil penalties to the Securities & Exchange Commission *In August 2009, WellCare paid a civil penalty to the Florida Election Commission of $120,000, for "questionable" campaign contributions Conclusions and Questions The purpose of the event on Thursday night had been to give our local disability community an opportunity to let state legislators know the problems we are all having due to the state's cutting of Medicaid services. CDREA President Summer Harrison and Vice President Linda Nuland-Ames asked our legislators the following questions: 1. Why are we allowing two out-of-state for-profit companies to gain their profits at the expense of services for our most vulnerable populations -- the elderly and disabled -- while siphoning off jobs and profits to other states? 2. The percentage of Medicaid paid by Hawaii (as opposed to the federal percentage) went from 45% down to 33%, representing a 27% cut in Hawaii's budget contribution. If Hawaii could get a 27% cut without reducing services by a dime, why has the state continued to cut Medicaid services that benefit the aged and disabled population? 3. As of October, Hawaii has received an additional $151 million in stimulus funds that can only be used for Medicaid. What is it being spent on? State Medicaid Administrator Ken Fink said that part of it was being put into the general fund, but wouldn't that be a violation of the terms of receiving the stimulus funds? 4. Will Hawaii be taking advantage of the $20 billion in Health IT grants recently announced to grow our state's high tech industry? Or are we going to pay it to the 2 out-of-state companies so they can hire more people out of state? CMS also offers free technical advice so that states can develop their Medicaid IT programs, eliminating the need to hire outside for-profit companies to administer the budget. 5. And out of all the companies that could have been chosen to supply Hawaii's Medicaid services, how did these two particular companies get the contract, especially given their less-than-stellar histories? Lawmakers attending agreed that Hawaii's state auditor should be asked to resolve the fate of the state's millions of Medicaid stimulus dollars.

Tuesday, October 20, 2009

California court decision stops Medicaid home service cuts

A U.S. District Court judge in California yesterday put a halt to Medicaid cuts in home and community services that were due to go into effect on November 1.
“This is a big day for people with disabilities, their families and seniors throughout the state – their right to stay safely in their homes - and not be forced into nursing homes or other institutions - has been reaffirmed by the Court,” said Paula Pearlman of the Disability Rights Legal Center.
These are the same kind of Medicaid service cuts, targeted at the same population group (the elderly and people with disabilities), that have resulted in civil rights legal actions in at least 12 other states. At least three states are under federal scrutiny as to whether states are systemically breaking federal Medicaid law and the ADA. A similar ruling took place in Tennessee earlier this year. On the other hand, a similar case brought in Hawaii was literally stymied by the District Court judge, who refused to give the plaintiffs any opportunity for appeal and left no alternative but withdrawal of the case. Medicaid deals with federal civil rights. As long as the individual states have the ability to "define" their local Medicaid programs as they see fit, with no necessary reference to the law, then there can be no equality for our elderly and medically challenged populations. It's left up to public interest law groups and exhausted parents to fight for federal civil rights on a state by state basis, as no one at the federal level seems to want to guarantee that states follow federal law.

Wednesday, September 30, 2009

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.

Friday, September 25, 2009

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.

Monday, September 21, 2009

We're Site of the Day on'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!

Friday, September 18, 2009

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.

Thursday, September 17, 2009

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

Sunday, September 13, 2009

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.

Saturday, September 12, 2009

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.

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.

Friday, July 17, 2009

New documents on Scribd regarding EPSDT and recent CMS rulings

I've just posted quite a few new documents to Scribd. The good news (and I'll write more about it later) is that CMS has now endorsed the following statement it made in May of 2003:
The Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) provision is Medicaid’s comprehensive and preventive child health program for individuals under the age of 21. ESPDT services include periodic health screening, vision, dental, and hearing services. The Medicaid statute also requires that states provide any medically necessary health care services listed in section 1905(a) of the Social Security Act (the Act) to an EPSDT recipient even if the services are not available under the state’s Medicaid plan to the rest of the Medicaid population.
The Individuals with Disabilities Education Act (IDEA) was passed to “assure that all children with disabilities have available to them… a free appropriate public education which emphasizes special education and related services designed to meet their individual needs.” The IDEA authorizes federal funding to states for medical services provided to children through a child’s Individualized Education Program (IEP), including children that are covered under Medicaid. In 1988, section 1903(c) of the Act was amended to permit Medicaid payment for medical services provided to Medicaid eligible children under IDEA and included in the child’s IEP.
While schools are legally liable to provide IDEA-related health services at no cost to eligible students, Medicaid reimbursement is available for these services because section 1903(c) of the Act requires Medicaid to be primary to the U.S. Department of Education for payment of the health-related services provided under IDEA. Medicaid covers services included in an IEP under the following conditions: • The services are medically necessary and included in a Medicaid covered category (speech therapy, physical therapy, etc.); • All other federal and state Medicaid regulations are followed, including those for provider qualifications, comparability of services and the amount, duration and scope provisions; • The services are included in the state’s plan or available under EPSDT; and • The medical service must be provided to a Medicaid eligible student.
Put this together with the 1980 DOE pamphlet on EPSDT and the schools, and new horizons for getting our kids the help they need have opened.

Friday, July 3, 2009

America's Two-Headed Dog: Layoffs and Cuts to Social Programs

(This is a response I left to an article on The Huffington Post.) What's left out of the debate is the fact that many of these social welfare cuts are actually federal civil rights violations, and that the states have already received new federal grant money to pay for them. According to the ARRA website, by March 31 the states had received more than $15 billion in federal grants to be dedicated to medicaid programs. In order to get that money, the states could not have "eliminated coverage for home- and community-based waiver care that costs more than institutional care" since July 1, 2008. Since the nineties, reports have been published around the country showing that home and community based care services are always a cheaper alternative, program-wide, than institutionalization. The DHS Office for Civil Rights is now investigating whether such "home-and-community-based" services medicaid cuts are violations of the civil rights of individuals with disabilities. Similar civil rights complaints are pending in six states. So what have the states spent the $15 billion on? Here in Hawaii, the "home-and-community-based" program was cut by 65% - $14 million. Hawaii has already received more than $70 million in ARRA medicaid grant funds. But services are still being cut. The GAO recently called for oversight of what's happening with the ARRA funds once they go to the states. Apparently that's where the "transparency" stops. And kids who need those services in order to stay home with their loving families and caregivers are being threatened with institutionalization. It's barbaric. Read the Article at HuffingtonPost

Shirley Hufstedler and EPSDT

If you're not familiar with her name, Shirley Hufstedler was the very first US Secretary of the Department of Education. Jimmy Carter appointed her, and according to Wikopedia, said that if he'd had an appointment to make to the Supreme Court, it would have Hufstedler. During the fourteen months that she served as the Secretary for Education, a brochure on EPSDT was jointly published by Hufstedler's DOE and the Health Care Financing and Public Health Administrations of the Department of Health and Human Services. The 1980 brochure (the date is handwritten on the cover of what I found on the internet) is titled "EPSDT - A How-To Guide for Educational Programs." As a parent who has spent the past seven years advocating separately for my daughter's rights under IDEA and EPSDT, this is strange news. On page 17, it clearly states that there should be only a single care plan for each child, so that services received under EPSDT are clearly delineated in the IEP. It's a fascinating document on how all the civil rights of our kids with disabilities were supposed to be cared for by an integrated system working towards individualized goals and accomplishments for each child. A second document, targeted specifically for parents, was published by DHHS in September, 2004. It says the same thing about joint EPSDT/IEP care plans. If any parent reading this has such a thing, would you please let me know? In other words, home care, nursing care, additional speech, physical or occupational therapies (in addition to those paid for by DOE), assistive technology, all marked as paid by EPSDT, are in your child's IEP?

Thursday, July 2, 2009

New resources uploaded to Scribd

I've uploaded some newer documents to Scribd. 1. CMS in March of this year updated their database for the number of children eligible for EPSDT, at least as of 2007. One report is national in scope, the other breaks it down by state. Figures are provide by the states. There are no budgetary figures at all. Even with the states having the benefit of filling out the forms themselves, the national study still shows that nationally only about 58% of the 31.5 children eligible for participation actually received any service. The older the child got, the lower the chance was that they were receiving services at all. 2. A GAO report published this April discusses the needs for transparency and accountability in state use of ARRA funds, including the FMAP funding for medicaid. Interestingly, the report also mentions that state officials were concerned the additional federal funding didn't include enough money to pay for more state employees to provide oversight of all the new programs. 3. A number of local reports have been published showing that medicaid home and community support programs are much more cost efficient than the only alternative, institutionalization. Reports range from a Washington, D.C. report released in April 2009, to a 2000 report from New York. There's also an NIH report from 2003 showing the same thing. 4. This is an interesting document I found on George Washington University's website, but can't find was it was linked to. It has a state by state listing of language with regard to EPSDT services that must be included in a state's contract with a Managed Care Organization. The wording is great; it's just the lack of monitoring and enforcement that's the problem. 5. Here's an undated working draft from CMS of a brochure on how to strengthen state medicaid waiver HCBS services. 6. A wonderful report from the Kaiser Commission on Medicaid stating in very clear language what the purposes and benefits are of EPSDT. 7. Here's another article from the GWU website, with EPSDT language to be included in every state's EPSDT RFP. Happy reading.

Over 31 million kids covered under EPSDT are losing their federal entitlement services

The post I'm copying in below is how I feel personally about the things I've been reporting. I can't understand how a country can save money on the backs of little kids who are sick or have disabilities and absolutely no one is paying attention. The most recent figures are from 2007, but they show then there were more than 31.5 million children eligible for EPSDT. EPSDT has to be the least-written about Federal program out there. I searched on the GAO's website, and found three references to it, the most recent from 2007. The Center for Medicaid and Medicare Services hasn't updated their page defining EPSDT for about that same length of time. EPSDT grants more than 31.5 million kids who are sick and uninsured or poor or have disabilities the right to be cared for at home by their parents and friends. It grants them a civil right to every service a doctor says is medically necessary, under the economic supposition that money spent now is less money spent in the future. In fact, study after study has shown that states actually save money on their medicaid budgets by providing home based community services waivers rather than if they had to pay for institutionalization. Moreover, according to a June 2009 report from the Kaiser Foundation,
children represent only 17 percent of total Medicaid expenditures, demonstrating that per capita spending on children is the lowest among all beneficiary groups.
Yet for some reason, the "terrible cost of doing nothing" right now is that these same 31.5 million kids are having their rights stripped away by the states. A May 29 letter written by Disability Rights California succinctly states the basic problem: EPSDT is a federal entitlement, and as such the state cannot eliminate the services it pays for.
EPSDT, like most other Medi-Cal services, is an entitlement, so state General Fund expenditures for EPSDT have been driven by the increases in entitlement for these services that are mandated by federal law. The state cannot eliminate the federal entitlement to EPSDT services unless it gives up all of its federal Medi-Cal matching funds - so essentially this will result in an unfunded mandate to the counties.
But the states are doing it anyway, and nobody in Washington is paying attention. Unless someone does, who is going to help more than 31 million kids get the medical care they need? Here is my post on

The title of your post, "The Terrible Cost of Doing Nothing" applies to something else going on in our country right now, something that violates civil rights while providing a perfect example of why we need public health coverage. Last Friday, a Kentucky newspaper reported that the DHS Office for Civil Rights was investigating whether state medicaid cuts directed at services for individuals with disabilities constituted a federal civil rights violation. At least 17 other states have made the same type of medicaid cuts as Kentucky. Seven states already have pending court cases alleging the same civil rights violation. These 18 states have already received more than $2.5 billion in additional FMAP grants. Technically, Section 5001 of the ARRA says a state can't receive this FMAP funding if they've cut their home and community based waiver programs since July 1, 2008. Any cuts made since then were supposed to be restored before FMAP grants would be released. Adding insult to injury. states like Hawaii have turned their medicaid programs, including EPSDT, over to profit-making insurance corporations. These MCOs make EPSDT decisions based on the profit margin, not the child's need. Title XIX gives children under 21 with disabilities a civil right to any service their doctor says is "medically necessary." First, Title XIX defines a program called EPSDT that allows all children on medicaid to receive any "medically necessary" service (including rehabilitative, arguably habilitative, environmental or technological). It then goes on to create a special set of programs called Home and Community Based Waivers, so that children and adults with disabilities (and a growing number of other special health care needs) can received medicaid based on their care need, not their personal income and assets. It is these waiver programs that are being reduced across the country. EPSDT isn't picking up the slack because either nobody knows about it or knows how to access the funds, or are getting turned down. Meanwhile millions of children and adults with special health care needs, along with their caregiving family and friends, are being threatened with institutionalization. Medicaid proves that neither states nor private companies can make unbiased decisions about medically necessary care for one of the weakest groups in our society. These same entities certainly can't be trusted to make unbiased health care decisions for anyone else. Yet the structure and the laws are there. The civil rights have been granted, the budgets are presumably there (I understand that state EPSDT budgets are supposed to be maintained separately) but Medicaid needs to be administered publicly. I write a blog on EPSDT and the medical civil rights of children with disabilities. All my sources are there.

Tuesday, June 30, 2009

Colorado slashes medicaid budget for home based services

According to an article in today's Colorado Springs Gazette, cuts went into effect today stripping home and community based services from about 700 individuals with developmental disabilities.
The change was set into motion by the Centers for Medicaid and Medicare Services, which required that Colorado's reimbursement system be standardized after an audit found discrepancies in how Medicaid dollars were being spent ...The state's developmental disabilities division created a new model that bases benefits on a person's level of disability. The system also places limitations and caps on spending.
It sounds like Colorado may have done something like Hawaii did, moving people with disabilities from one type of medicaid program to another, with a subsequent loss of civil rights.

More Details Emerge in Kentucky Civil Rights Case

A Kentucky blog today contains more details of the federal Office of Civil Rights investigation into medicaid-related civil rights violations. This case has tremendous impact for national advocates for health reform, disability rights and senior long term care issues. The case focuses on whether Kentucky cuts in medicaid provided home support services violate the 1999 Supreme Court Olmstead Decision. The Olmstead decision determined that individuals with disabilities had a civil right to care in their homes and communities and this care was provided through medicaid. Civil cases alleging Olmstead violations for similar state directed medicaid cuts are underway in six other states: Washington, Pennsylvania, Hawaii, Idaho, Tennessee and New Jersey. The Kentucky investigation has set a precedent. Meanwhile, the question arises what are these states doing with the additional American Recover Act funds that they have already received that must be dedicated to medicaid. While the GAO calls for full transparency in the disbursement of funds from ARRA, the requirement for transparency apparently stops at the state level. The states that have announced medicaid home service cuts have already received over $2.5 billion dollars that is required to be spent on Medicaid. Where has it been spent?

Monday, June 29, 2009

New lawsuit filed in Pennsylvania alleging Olmstead violations

Pennsylvania has now become the sixth state I've learned about that has a pending court case based on violations of the civil rights of individuals with disabilities.

Sunday, June 28, 2009

CMS proposed new rules to strengthen Section 1915(c) medicaid waiver programs

As part of its celebration of the tenth anniversary of the Olmstead Decision, HHS announced proposed rulemaking designed to strengthen and broaden state operated HCBS 1915(c) waiver programs. The proposed rulemaking was published in the Federal Register last Monday, June 22. Supposedly intended to broaden the potential scope for participants in medicaid waiver programs authorized under Section 1915(c), these rules have one major drawback: they continue to leave implementation up to the individual states. I strongly believe that medicaid (as well as medicare) needs to be operated at the federal level, and that this transfer of power needs to take place as soon as humanly possible.

Feds Investigating Kentucky medicaid home services cuts as civil rights violation

A Kentucky newspaper reported yesterday (June 27) that the US Department for Human Services Office for Civil Rights is investigating Kentucky for federal civil rights violations incurred by cutting home based medicaid services for people with disabilities. Since I started this blog five months ago, I've been able to identify five states being sued for potential Olmstead civil rights violations. I've also found and linked to news articles from eleven more states that are slashing their budgets for home and community support services through Medicaid. Now that the Federal Office for Civil Rights has made this a federal issue, the time has come for the feds to step in and take action at a national level. Sixteen states are all targeting the very weakest group in our society -- children with disabilities. The Olmstead Act gave these children, whether under 21 or as adults, the fundamental civil right to live with their families, by using medicaid to provide the home based services necessary to prevent institutionalization. It's a Federal Supreme Court decision, the laws are federal, and the Office for Civil Rights is federal. And all of these states are presumably receiving significant additional federal matching funds for their medicaid programs through Section 5001 of the American Recovery Act. According to the ARRA website, these 16 states have already received FMAP grants totaling about $2.5 billion dollars. If the federal government deems it a civil rights violation in one state, then it only follows that cutting home based services for children with disabilities is a civil rights violation in the other fourteen states. According to the Office for Civil Rights website, 62% of the 561 Olmstead Act related investigations they performed between April 2000 and May 2009 required "corrective action." I filed a complaint on behalf of my daughter with the DHS Office of Civil Rights last January, but because of the federal suit being brought against the state of Hawaii, I couldn't follow up. I'm refiling today. Maybe if we all filed emails with the Office for Civil Rights, they would take notice how widespread the problem is and put a halt to this unconscionable discrimination against our children with disabilities. Here's where the Office of Civil Rights discusses disability rights. And here's the page with information about how to file a complaint with the Office for Civil Rights. You can do it by email, or filling out their online form. Maybe this is our chance to get this discrimination stopped once and for all.

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.