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.