Letter from UHC added to OCR Complaint Alleging Coercion and Retaliation

On November 30, I gave UnitedHealth, my daughter's Medicaid provider, a letter of prescription from her primary doctor.  The letter stated it was medically necessary for my daughter to have a case manager who was not an employee of either UnitedHealth (called Evercare in Hawaii) or the state.  It also stated she needed additional physical and occupational therapy.  A separate prescription from the UCLA pediatric neurology department said Hannah needed 6 hours a week of training on a functional speech generating device.  The letter from Hannah's doctor included the medical necessity justification for this training.

On Friday they replied, denying everything.  The second sentence in the letter put the blame for any of it on the US Department of Health & Human Services.  Hawaii Medicaid has purportedly been in discussions for weeks with UnitedHealth and Wellcare over who pays for EPSDT services.  I have been led to believe these discussions were taking place under the watchful eye of CMS (the federal Medicaid regulatory division, Centers for Medicare and Medicaid Services).

The letter was way overdue, likely due to the discussions going on.  I needed a formal denial in order to initiate the appeal process.  But this letter is such a deliberate and blatant assault on my daughter's civil rights that I have to ask whether it violates the ban on coercion and retaliation under the ADA.

First let's be clear that EPSDT provides children with disabilities a civil right to the services they need to remain in their communities.

Civil rights are different from legal rights.  Legal rights can vary from one state to another -- in some states u-turns are legal.  But civil rights are universal throughout the country.

I've written a history of EPSDT that explains how a legal statute evolved into a civil right, and the implications this has for children with disabilities or receiving special education services.  I show that there has been a long struggle between the states and federal law over who is the decision maker for the determination of medical necessity, key to EPSDT's universal mandate.  

Federal regulations, documents and court decisions as recently as December 2009 have made it clear that state Medicaid officials and their contractors do not have the right to deny, limit or reduce what a child's doctor says is medically necessary for that child.

Given this background, the letter from UnitedHealth is interesting for several reasons.

First and most prominent is the letter's direct contradictions of federal regulations.  The letter states, for instance, that "an independent case manager of your choice is not a covered QExA benefit.  The United States Department of Health and Human Services has waived the "free choice" provisions of the Medicaid statute and regulations as part of the QExA program."

First, if CMS can waive civil rights my daughter has under EPSDT, there is a serious problem.  No division of the government should have the power to take away a child's civil rights.

Second, in September 2008, CMS issued Hawaii a "Special Terms and Conditions" letter for enactment of the new expanded access program.  Page seventeen has a list of all the services the two MCOs must continue to provide and "specialized case management" is top of the list.

Virtually everything I've found written by CMS on the topic of case management in the past year has referred to the need for individualized case management teams.  If CMS has determined this type of individualized case management is medically necessary for children like my daughter (and CMS told me that they thought Hannah should actually have two case managers) then I don't see how CMS can waive that right.

The next part of the letter that seems questionable states that:

"Evercare properly provides the case management services required by its contract with the State of Hawaii Department of Human Services through Evercare employees.....Hannah's case manager under the Department of Health DD/MR program is her primary case manager and Evercare's field service coordinator...is Hannah's secondary case manager."

Here is what the contract between Hawaii and Evercare says about the responsibilities to be carried out by Evercare's secondary case manager:

"Service coordinator responsibilities for all members shall include:

• Coordinating a team of decision-makers to develop the care plan, including the PCP, other providers as appropriate, the member, and others as determined by the member including family members, caregivers and significant others; ...

• Monitoring progress with EPSDT requirements; ... [and]

• Coordinating services with other providers such as Medicare, the DOH programs excluded from QExA, Medicare Advantage plans, other MCO providers, Zero-To-Three, Healthy Start, mental health and DD/MR providers at DOH."

The "team of decision-makers" to date has been limited to state and Evercare employees.  Evercare has denied all the prescriptions from Hannah's doctor for medically necessary services under EPSDT, so I'm not sure how that qualifies as "monitoring progress".  And as for Hannah's case manager at the DD/MR program of the state Department of Health, he hasn't updated Hannah's care plan since 2005.

I discussed the recent efforts made by CMS to specify that case managers cannot be in a position to make decisions on providing services.  Since both the DD/MR case manager and Evercare secondary case manager work for entities that have a financial conflict with my daughter's medical interests, they cannot be her case managers.

My favorite part of the letter from UnitedHealth is this statement:

You appear to be under the impression that medical necessity is determined solely by Hannah's treating physician.  That is not the case under Hawaii law.....Evercare is not bound by Dr. G's determination of medical necessity, and is entitled to make its own determination.

First, state law cannot be more restrictive in civil rights than federal law.  Second, it is not just me that is under that impression, but also a few federal judges and the CMS themselves.

This letter is distressing on several levels.  The blatant contradictions of federal law seem designed to inflame rather than inform.  Any parent would react poorly to that "you appear to be under the impression" sentence.  I've asked before and I'll ask again:  why is a company netting $4 billion a year making life and death decisions for my daughter?

I'm now going to be forced into yet another protracted appeals process.  

On February 12, CDREA filed a class complaint with the DHHS Office for Civil Rights.  The complaint alleges that Hawaii Medicaid and its subcontractors (such as Evercare) have been violating the ADA's ban on coercion and retaliation.  

This letter will be added to the evidence already submitted in support of this complaint.

Health Reform D-Day Approaches

 permalink

I don't believe Medicaid needs to be strengthened as much as it needs to be enforced.

Six million people on Medicaid already have a civil right to all the medical care their doctor says is necessary for them to stay out of institutions. This is more than just a legal right -- the Olmstead Decision in 1999 made it a civil right.

If the states so far haven't been able to find a way to take care of their most vulnerable citizens without trampling on their civil rights, I don't have much hope for them doing any better under newer regulations.

I've been working with CMS and OCR since August. There is no enforcement in place that's effective because Medicaid is considered under state jurisdiction. The problem is compounded by the fact many states are taking the easy way out and farming their public programs out to for-profit insurance companies.

In the past seven months, the CMS and a federal court judge have said that there is an inherent conflict of interest between state Medicaid employees or contractors, and the people they are supposed to be caring for. That conflict of interest has to be removed before any health care reform can be successful or the tragedies besieging the families of kids with disabilities now will just spread to the rest of the population.

From the Huffington Post

Health Reform D-Day Approaches

I'm sorry, but I still want to know why Obama and the democrats are so studiously avoiding mention of this epidemic of traumatization of our most vulnerable citizens.

Is it because it only affects about 6 million people? You still need to add in the parents and caregivers who will fight desperately to keep their children (of whatever age) at home with them.

How many billions of dollars in stimulus funds are going to for-profit insurance companies with out-of-state headquarters, while Medicaid funded local employment of nurses, nursing aids and personal assistance caregivers is being eliminated.

Here's a weird figure for you: since January 6, 2010, 24 states and the District of Columbia have run local news stories about horrific local tragedies resulting from cuts in Medicaid funded home services. None of them mentioned the others.

Class action and civil suits alleging civil rights violations under Medicaid law have been filed, heard and/or decided in fifteen states in the past year.

Why is anyone who cares about health care reform so studiously ignoring this problem?
Read the Article at HuffingtonPost

Health Reform D-Day Approaches

It doesn't matter what this country does for health care reform if we don't follow the laws already in place.

Federal law and the Supreme Court already grant civil rights to medical care to our most vulnerable populations. This includes about 2.2 million children who are considered medically needy; and four million or so adults (including the elderly) who are too disabled to live independently.

Last week Hawaii became the seventh state in the past year to come under federal investigation for civil rights violations stemming from cuts to Medicaid budgets for home services. These are the budgets that make it possible for this population of about six million to stay out of institutions and home with their families.

We're already a country that allows a $4 billion a year company like UnitedHealth Group to make life and death decisions about children so disabled they need 24/7 nursing care to remain with their families. Their alternative is to be locked up in giant cribs with metal bar walls and ceilings and infrequent human contact. Parents are told their children's lives are worth no more than $6,000 a month. After that, it's not cost-effective to keep them alive.

The public option can't work as long as the profit motive is allowed to interfere with medical decision making. We don't need more regulations as long as states and for-profit insurance companies continue to be allowed to use federal dollars to violate civl rights with impunity.
Read the Article at HuffingtonPost

Take CDREA's survey to see if your disabled child's civil rights are being violated

I announced yesterday that the Office for Civil Rights at the US Department of Health and Human Services had opened an official investigation into whether Hawaii's cuts in Medicaid home services were violations of the civil rights of children and adults with disabilities.

Today, the Children's Disability Rights Education Association has launched two surveys for the parents and caregivers of children with disabilities, to gain an idea of how widespread the problem is.

One survey is intended for the parents of children with disabilities who are already receiving Medicaid.  The second survey is for the parents of children with disabilities who are not receiving Medicaid.

Please see the CDREA article for more information.

Feds Probe Civil Rights Violations in Hawaii

This is a story about how four moms and a dad are changing perceptions of the civil rights of children with disabilities.

Late last week it was learned that the Office for Civil Rights of the US Department of Health & Human Services is opening official investigations into complaints that the state of Hawaii is violating the civil rights of people with disabilities.

The complaints were filed by four Hawaii parents of medically fragile children, and the mom of a young quadriplegic man.

The civil rights violations that are being investigated

The violations stem from civil rights granted through a Supreme Court decision in 1999.  What's become known as the Olmstead Decision ruled people with disabilities had a civil right to receive the medical services that enabled them to stay at home, rather than being segregated into institutions.  These services are provided through state Medicaid health care plans.

This latest investigation mounted by the OCR may be the first to recognize that children with disabilities have a second, inalienable right to medically necessary treatments and services that state bureaucrats cannot deny, limit or reduce.

For years, these treatments and services have been denied, limited and reduced by state bureaucrats and the for-profit private insurance companies that are winning state Medicaid and Medicare contracts across the country.

With the recession, bureaucrats and insurance companies have been looking for ways to save money without people noticing.  The families and caregivers for children and adults with disabilities have been an easy target.  Usually they are just too exhausted to complain.  They are also extremely vulnerable to coercion (such as 'don't ask for so many hours of help or we'll throw your kid in an institution').

We (and I'm one of those moms) are a small population, but cuts to the Medicaid home services that enable our children to live at home with us can give a for-profit company or state a big bang for the buck.  Here in Hawaii, for instance, the 5,663 people receiving home nursing and caregiving services through Medicaid cost the state $120.8 million in 2005 (the most recent year I have both sets of figures).  Our kids are expensive to keep at home, but the alternative is locking them away in big cages (safety beds) in institutions.  The higher risk of death in an institution or without proper home care is acceptable, as state employees and insurance company gatekeepers frequently tell us.

We have all been told, in one way or another, that it wasn't cost-effective for the state to pay to protect our children's lives.

The problem is national in scope

Back on June 29, 2009, the Center on Budget and Policy Priorities reported "at least 39 states have made cuts that harm vulnerable residents to help close budget gaps."


In line with OCR's decision to investigate Hawaii's Medicaid cuts as civil rights violations, the similar cuts in all thirty-nine (at least) states may now constitute civil rights violations.


Hawaii is at least the seventh state in the past year where Federal regulators have intervened on behalf of children and adults with disabilities.  The Department of Justice stepped in to a federal courtroom in North Carolina, Kentucky is under investigation by the OCR, and federal Medicaid regulators (CMS, or the Centers for Medicare and Medicaid Services) have intervened in Idaho, Colorado, Alaska, Tennessee and Hawaii.  


Class action and private lawsuits alleging similar civil rights violations are pending, have been filed or have been decided in at least fifteen states in the past year:  Arizona, California, Colorado, Georgia, Hawaii, Idaho, Illinois, Kentucky, New Jersey, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee and Washington.  


Federal judges in only two states, Hawaii and South Carolina, have decided that potential cuts in services didn't matter since no harm had yet been done. The Department of Justice physically intervened in a similar court case in North Carolina, to ensure that potential cuts were put on hold.


Two federal cases in Georgia have decided that state officials and Medicaid contractors cannot over-rule a prescription from the doctor of a disabled child on Medicaid.  They have a potential financial conflict of interest with the medical needs of the child, and are also prohibited by federal Medicaid regulations from providing case management services to kids as well as adults with disabilities.


In a June 30, 2009 filing in the Federal Register, CMS clearly recognized the potential conflict of interest between state Medicaid gatekeepers and the actual needs of individual children and adults with special health care needs.  Six weeks later, CMS gave the state of Idaho written instructions prohibiting the state  and its Medicaid contractors from denying, limiting or reducing treatments and services prescribed for children with disabilities.  They can review them to ensure they are not fraudulent, but not change them otherwise. 

Meanwhile, back in Hawaii

As mentioned earlier, Hawaii is one of two states where federal judges have been completely unsympathetic to the civil rights of people, particularly children, with disabilities.

This blog has been describing parts of the battle families have been waging here in Hawaii over the past year.

Blocked from judicial relief, in July 2009 I filed a complaint with OCR on behalf of my ten year old daughter Hannah.  There was nowhere to go except up.

Since 2002, I've been waging private battles with the state over Hannah receiving the medical care and educational services she's entitled to under federal Medicaid law.  My daughter's brain damage from birth was so severe her head is still only the size of a six month old infant's, but she has had to have her own lawyers since she was three.

Last year I decided to take my fight on my daughter's behalf public, and help other families in similar situations.  The stories are horrendous, but until now very private of the four families I helped file complaints with the OCR over the past six months.

Four of us have children who are medically fragile.  They can't take food by mouth but instead get liquid diets through tubes in their stomachs.  Two need machines to help them breathe.  Three have life-threatening seizures that cannot be controlled and can erupt without a second's notice.  My daughter is the oldest, the youngest is almost four.

Two of us have had the state of Hawaii threaten us with institutionalizing our children if we didn't back down.  Two more received similar threats from the two for-profit insurance companies who hold the contract for Hawaii's Medicaid home and community based services.

Our fifth family is that of a 21 year old who broke his neck in an accident.  His mind is fine, but he can't turn himself over in bed, feed himself, or even go to the bathroom himself.  Medicaid says he should be fine staying home all day alone, just hoping nothing happens that he would need to be moved.

It's fairly mortifying as a parent to be told your child's well-being, and very life, aren't worth, say, any more than $6,000 per month.  To an outsider that may seem like a lot, but children like my daughter require 24/7 skilled line-of-sight nursing in order to remain in their homes.

Without it, Hannah would have to be shut into a giant crib with three foot high walls of metal bars, and a roof to match.  She's too mobile to be left alone, and an institution doesn't have the staff to watch her all the time.

Instead, it costs about $30,000 a month to keep Hannah at home.  Right now, at least two-thirds of that is being paid by the federal government.

That $30,000 goes completely into local job creation.  The ARC of Hawaii estimated back in 2003 that for every $10 million the state cut from it's Medicaid budget, it lost over $21 million in employment, services and taxes.

In 2008, Hawaii paid out about $167.5 million to provide home nursing and care services for medically needy children and adults.  At that time, the state's share was about 45%, or $67 million.

As of mid-January, Hawaii had received about $184 million in federal stimulus funds that could only be spent on Medicaid.  Presumably, about eight percent of that is going straight off the top to the two for-profit insurance companies that have state contracts to provide services to the medically needy community.

One of those two companies is UnitedHealth Group.  According to their third quarter 2009 financial releases, fifty percent of the company's total income derives from the twenty percent of its enrollees who are covered through state contracts to provide Medicaid and Medicare services.

UnitedHealth's net earnings in third quarter 2009 were up over 13% from the previous year, to $1.04 billion.

Why does a company that clears $4 billion a year have the right to decide how much a child's life is worth?