Let the appeal begin...

We have packaged up our appeal documents and mailed them in. It is absolutely nerve wracking. We plan to appear in person at the committee meeting. We couldn't find any resources online to help us write an appeal for coverage for an infant below coverage age, because in most states there is no lower age limit. So, we have decided to share our letter. If it works, hopefully someone else may be able to benefit from it. 

It's long, but says everything that we wanted it to. Please keep your fingers crossed!

Massive thank-yous to Kristen, Deb, and our parents for their input on this epic letter!

Katy and Adam x

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Dear Grievance and Appeal Committee,

Please accept this letter as Emma Morgan’s formal, urgent, and continuing request for you to promptly reverse X Health Plan’s decision to deny coverage for autism services with (Autism Therapy Center). As Emma’s parents, we are her advocates.

Intensive therapy services are recommended by Emma’s neuropsychologist and neurologist as being medically necessary. Despite the diagnoses and therapeutic recommendations of your own physicians, you have denied our request for medically necessary services by letter of denial dated 02/08/2014 because “services specifically related to a primary verified diagnosis of autism spectrum disorder are not covered for children under two (2) years of age.”

As you know, Emma, age 15 months, was diagnosed with Autism (299.00) and Global Developmental Delay (315.5) on 02/06/2014. Let us tell you about our daughter. Emma is an incredibly sweet little girl with the communication skills of a one-month-old (according to the accompanying neuropsychological evaluation). She is happy, but makes very little eye contact, and does not interact with others. She does not respond to her name. Emma spends hours staring out of windows, and spinning wheels on toy vehicles. She doesn’t play with toys, preferring to carry inanimate objects. She has the capacity to love and learn, but we are not equipped with the skills to unlock those capabilities.

Dr. V. made the Autism Spectrum Disorder (ASD) diagnosis at X Clinic. Currently Dr. V believes that Emma will significantly benefit from immediate “intensive therapy” from an autism therapy provider. Dr. V is joined in this belief by Dr. S, Pediatric Neurologist at X Hospital, who diagnosed Emma with brain damage and macrocephaly on 01/09/2014, and a genetic defect on 01/20/2014. Further, Dr. V’s and Dr. S’s beliefs are shared with Dr. S2, Director of Program Development at (Autism Therapy Center), who assessed Emma in December of 2013. Letters of support from each of these doctors are attached demonstrating that the earlier Emma can receive these services, the more impact the services will have. 

However, despite the multiple diagnoses, Emma cannot begin the necessary treatment because you have denied coverage. Emma’s doctors recommend that she needs to immediately begin Early Start Denver Model (ESDM) therapy, which is a comprehensive behavioral early intervention approach for children with autism, targeted at ages 12 to 48 months. Given that the American Academy of Pediatrics recommends that all 18- and 24- month-old children be screened for autism, it is crucial that children in this age range are offered effective therapies. Infant brains are malleable, and it is imperative that we try to capitalize on the infant brain’s learning potential in order to limit autism’s deleterious effects and to help Emma lead a better life.

You may not be aware that the ESDM has been validated in a randomized clinical trial for use with children with autism as young as 18 months of age. It has been found to be effective for children with ASD across a wide range of learning styles and abilities. A randomized clinical trial published in the journal Pediatrics (which we have included for your convenience) showed that children who received ESDM therapy for 20 hours a week over a 2-year span showed greater improvement in cognitive and language abilities and adaptive behavior and fewer autism symptoms than did children referred for interventions commonly available in their communities. This was the first controlled study of an intensive early intervention that is appropriate for children with autism who are less than 2½ years of age.

We believe that you did not have all the necessary information at the time of your initial review. Having read the “Autism Mandate FAQ” on (website) we have found that X Health Plan is inappropriately and arbitrarily applying the Wisconsin mandate. On this webpage, X Health Plan’s interpretation of the mandate is that “an individual qualifies for the intensive level treatment if a) the treatment began after 2 years of age and before 9 years of age…” This is simply incorrect. The state mandate simply demands that insurance cover intensive level treatment between 2 years of age and 9 years of age. It says nothing about excluding children under 2 years of age or over 9 years of age. As such, it is at the discretion of the X Health Plan to afford this coverage to a child such as Emma, who is under the age of 2.

Further, by the X Health Plan’s definition of “Medically Necessary”, Emma would qualify for services:

Medically Necessary:

The treatment, services or supplies provided by a hospital or Health Care Provider that are required to identify or treat a Member’s illness or injury and which, as determined by our Medical Affairs Division, are: (a) consistent with the Member’s illness or injury; (b) in accordance with generally accepted standards of medical practice; (c) not solely for the convenience of a Member, hospital, or other provider; and (d) the most appropriate supply or level of service that can be safely provided to the Member in the most cost effective manner.

Intensive therapy is the most widely accepted treatment of autism. The generally accepted standards of medical practice are such that 34 states actively mandate intensive therapy treatment for children with autism. Indeed, in 33 other states, Emma would have been able to start therapy already. There is no concern that this is solely for anyone’s convenience. We are providing letters from multiple professionals to prove necessity over convenience.  Finally this is absolutely the most appropriate level of service that can be safely provided to Emma in the most cost effective manner. Without this coverage, Emma will be entirely without access to intensive therapy, which is the least appropriate level of service that a child should be afforded. As for cost effectiveness, the lifetime per-capita societal cost of autism is $3.2 million, with lost productivity and adult care among the largest costs[1]. From an insurance perspective it is much cheaper to attempt to normalize behavior at a young age. Clearly early-intervention methods that can improve outcomes for individuals with autism spectrum disorders are of high importance.

With this letter we have included a peer-reviewed journal article from Pediatrics, entitled “Randomized, Controlled Trial of an Intervention for Toddlers with Autism: The Early Start Denver Model”, which demonstrates the efficacy of a comprehensive developmental behavioral intervention for toddlers with ASD for improving cognitive and adaptive behavior and reducing symptom severity. The results of this study underscore the importance of early detection and intervention in autism, echoing the Centers for Disease Control’s “Learn the signs. Act early.” campaign.

While there is clear evidence-based research that shows intervention at 18 months to be appropriate and successful, autism treatment is rapidly changing with mounting evidence that an autism diagnosis can be made conclusively at Emma’s age. Intervention with services from (Autism Therapy Center) at 15 months is not “experimental”.

Based on this information, we are asking that you reconsider your previous decision and allow coverage for the therapy that Dr. V outlines in her letter. The treatment should begin immediately. Should you require additional information, please do not hesitate to call us. We look forward to hearing from you in the near future and meeting you at the next committee meeting.

Sincerely,

Adam Morgan and Katy Morgan-Davies

Parents of Emma Morgan