Monday, January 17, 2011

How Hawaii's change from a "bureaucratic nanny state" to a Medicaid "free enterprise solution" victimized my daughter.

My eleven year old daughter's only alternative to living with me is an intensive care unit at a hospital.  Hannah has constant seizures when awake and asleep, any one of which can be life-threatening.  She can walk around but is partly blind from brain damage.  At home, she has learned her way around by the different colored walls.  In an intensive care unit at a hospital she would have to be confined in a five-sided crib (four sides plus the top) made of metal bars, so she can't get out and hurt herself.

On February 1, 2009, Hawaii changed from a "bureaucratic nanny state" to a "free enterprise solution" to Medicaid.  All forty-some thousand children and adults with disabilities, including the elderly, were forced to sign up for receiving their services from either UnitedHealth or Wellcare.  My daughter has been signed up with UnitedHealth since then.

Here is how the "free enterprise solution" has managed Hannah's care.  I am excerpting below from a complaint I filed with federal Medicaid regulators at CMS who have been investigating Hawaii's Medicaid program since the fall of 2009.

The dates in blue represent the commencement of the problem.  You'll see that some issues have dragged on for months with no notice of action (NOA) from Evercare as required by Federal law.  This would also apply to providers since they should be receiving NOAs for decreases (cuts) in services/Durable Medical Equipment/Medications.  This is not occurring.  NOAs provide the rights of the client and provider to appeal a decision, it also sets forth the decision for the denial.  For monitoring purposes by the State and reports to CMS, this insures that trends (denials/NOA) are reviewed to insure that denials are justified (not just denied and not paid for by the insurance company).  It also assists in detecting fraud by insurance companies (i.e. reporting services were provided when they were not for monthly capitation payments).  If Evercare denies with no NOA it is not reported to the State of Hawaii and therefore there is no oversight of the Health Plan.

The most recent case with Dr. Fink [Hawaii state Medicaid Administrator] is an example of lack of adequate oversight. Instead of investigating the issue of not being provided an NOA, Fink's letter just regurgitated what was stated by Evercare.  Under the 1115 waiver approval of the QExA health plans, following this process was key to insure that the rights of the most fragile/vulnerable population (aged, blind, and disabled) were not violated when these health plans took over FFS.  If this is happening to my daughter and there is approximately 41,628 enrolled with the QExA health plans, how many other clients’ rights have been violated by decisions by health plans with no NOAs. This leads to how many clients have been harmed or injured by these on-going violations.

Denial on 12/08/10 of prescription for urgent medical supplies.  No NOA issued.  Resolved 12/10/10.

Email to Bazin [Hawaii Medicaid] and Heywood Hawaii UnitedHealth] filing complaint for failure to provide case field supervision, and unreasonable and potentially dangerous delay in approving the servicing of Hannah's feeding pump.  We had been trying to get the pump fixed for a couple of months, and "service" had apparently been denied weeks earlier, no NOA issued.  Issue resolved 10/13/10.

Email on 10/13/10 to Bazin and Heywood detailed field coordinator's attempt to change Hannah's medical protocols without consulting anyone.

Email to Bazin and Heywood that Evercare has suddenly denied approval of one of Hannah's seizure meds.  No NOA issued.  Denial reversed 08/05/10.

Carol Franklin, Hannah's field coordinator at Evercare, was presented in person with letters of medical necessity and prescriptions from Dr. Susan Koh, encompassing the following:  (1) purchase of a Rifton gait trainer; (2) five hours a week of physical therapy working with Hannah and the gait trainer; (3) five hours a week of occupational therapy; and (4) "at least 5 hours a week with a speech language pathologist that could train her family on how to use the dynavox."  Dr. Koh also states that the dynavox is "medically and educationally necessary for Hannah in order for her to ... communicate more effectively."

This is the "5-5-5" request that Evercare's lawyer acknowledged receipt of to Hannah's lawyer on October 8 and 18, 2010.  She (Evercare's lawyer) acknowledged the company's lack of response as well.

Between June 28 and June 30, I emailed Patti Bazin and Dave Heywood, among others, regarding the letters and prescriptions given to Evercare's field supervisor for Hannah on May 19.  Patti had Joylyn call me, she agreed we were outside the 14 day limit.

The Rifton was suddenly approved verbally by Heywood in late July.   However, the therapy using the gait trainer has never been authorized.  Evercare was made aware back in October that the school is unable to provide this assistance, and that the gait trainer as a result is sitting here unused.

11/24/10 received verbal notice that Evercare had approved two sessions per week of speech therapy with "x".  This is apparently the response to the prescription for 5 hours a week submitted on May 19.  
 "x" has experience in assistive technology for adults with Parkinson's.  Their minds already know how to communicate, it's just they can't use their voices anymore.  She has no experience on the Dynavox.  She has no experience working with children (who have to learn the structure of communication along with the use of technology) and any sort of assistive technology, let alone the Dynavox.  

12/09/10 email to Ken Fink brought this issue up as well as the lack of any NOA.

12/17/10 letter sent from Cheryl Ellis, Medical Director for Evercare certified, return-receipt, instead of NOA for speech therapy.  Letter states that "the goal of the speech therapy is to work with Hannah, you and the caregiver to improve Hannah's ability to use her DynaVox more effectively in communicating her wants and needs".  
  "x" cannot provide therapy to meet this goal.  The letter gives me no options to appeal.

Evercare unable to approve and provide emergency order for catheters for ten days.  Order placed after ER visit.  Detailed in 05/06/10 email.

April 2010
Prior authorization for foot orthotics was submitted in early April directly by the orthotic supplier in Denver.  I received nothing from Evercare care in writing.

05/19/10 Verbal Denial of prescription for foot orthotics by Evercare.   NOA received 5/22/2010.   Carol Franklin called Denver supplier and told them it was on hold pending an appeal, but I never received any paperwork regarding an appeal.  I finally paid for them myself.

Prescriptions submitted to Evercare for medications ordered at Denver Children's Hospital.  Emails on 04/06/10 detail Prescription Solutions (UnitedHealth's pharmacy subsidiary) attempt to prescribe alternative drug that didn't treat Hannah's problem.  No NOA issued.  Denial reversed 04/06 or 04/07.

Began planning of Hannah's trip to see seizure specialists in Denver.  Medicaid has been paying for Hannah's trips to see pediatric epileptologists on the mainland since 2001.  There are no certified pediatric epileptologists in Hawaii and we go once or occasionally twice a year.  Evercare had paid for a ten day trip to UCLA Medical Center in June 2009, with no issues made over approvals.  Carol Franklin was made aware I was working on the Denver schedule.  I told her I was giving all the providers in Denver her number (which I did in phone calls).

The itinerary was finalized on February 25.  We were to depart on March 27. I gave it to Hannah's pediatrician.  Carol was aware the schedule was completed.

First week of March I received a call from the Denver Children's Hospital that Evercare is telling them I don't have prior authorization and need to have Hannah's pediatrician submit the proper form.  (Evercare is Hannah's secondary insurer, and her primary insurer had approved payment).

The pediatrician got the form off by fax prior to March 9.

03/15/10  I emailed Carol Franklin asking the status of the trip approval.

03/18/10  I emailed Carol again.  She still says she doesn't know.

3/18/10 NOA issued for trip, denying coverage on the basis all services were available locally.  I received the letter on 3/22/10.

3/23/10 email to Heywood, CMS and others with letter from Hannah's doctor in Denver that there were no specialists available in Hawaii to treat Hannah.

3/24/10 telephone call from Heywood reversing denial and approving trip with departure on 3/27.  Heywood confirmed he had telephoned all the neurologists in Honolulu and all had refused to provide services to Hannah.

3/26/10  emailed Heywood re Evercare's failure to give the Denver Children's Hospital the necessary written approvals for coverage.

Prescription Solutions denies medication, recommends alternative that will worsen condition rather than treat it.  No NOA.  I emailed Patti Bazin and Evercare.  12/18 emailed again. Prescription denial reversed.

Prescriptions submitted to Carol Franklin at Evercare for 5 hours a week of PT, three hours a week of OT, 6 hours a week of training on the dynavox in communications. Letter supports UCLA prescription for 6 hours a week of training in functional communications submitted to Evercare on 9/03/09.  Prescriptions also included multi-disciplinary case management team for Hannah.

Emails sent to CMS and Dave Heywood on 1/12 and 1/19 regarding failure to respond to November 30 prescriptions.
02/23/10 received NOA (denials) for 11/30/09 prescriptions.

Evercare denied  medical supplies Hannah had been receiving since prior to February 1, 2009.  No NOA was issued.  I only found out because the supplier, Pharmacare, was holding up Hannah's food delivery for October.

09/29/09 I emailed Patti Bazin re ongoing Evercare denial of medical supplies

Gave Carol Franklin prescription from UCLA for six hours a week of training on a facilitative communication device.

August 2009
Dynavox request submitted directly to Evercare and my primary insurance company by the company.  Evercare had issued two denials by the end of September; one on the basis it was the responsibility of the DD division, the other because it was a DOE responsibility.

09/29/09  Emails to Patti about the dynavox denials.

11/09/09  Anthea Wang issued a ruling on November 9 that Evercare provide Hannah a 3 month trial on the device, and that if the machine was effective, Evercare was to pay for it.

12/29/09  I emailed Patti again regarding the Dynavox approval issue (Hannah had shown noticeable improvement using the device in only three weeks).

01/05/10  I emailed CMS copies of emails that seemed to show Evercare was trying to get my private insurance company to withdraw their approval of the dynavox.

01/06/10  Evercare approved paying  25% of the cost of the device, with my primary carrier paying 75%.

07/19/10  I notified Heywood, Ellis and Franklin in writing that Summerlin had not paid for the dynavox and this was going to affect my credit.

10/08/10  The issue of the continued non-payment for the Dynavox was brought up to Evercare's attorney.

12/10/10   Dynavox has never been paid by either my primary carrier or Evercare. They have just written me they have placed the account in collection, and are holding me completely responsible for the full amount due.

As a mother, I find all of this neither managed nor care for my little girl.

Knowing I keep good records, Hawaii Medquest has twice assured CMS that I have no outstanding complaints.  A recent rumor says that could be because somebody under former Director Lillian Koller decided to remove federal compliance from the contracts with UnitedHealth and Wellcare.

Be that as it may, it leaves open the question of what happens to all the other families who don't know to keep these kind of records, let alone what to do with them.

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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.