Wednesday, August 29, 2012

Dear Dr. Satan (For Reals This Time),


Here's what I really wrote to Dr. Satan in our for reals appeal, in case any of you are interested in comparing and contrasting:

To Whom It May Concern:

I am writing on behalf of my son, Rylan Dittrich-Reed, to file an appeal against a decision by badscaryinsuranceguys and Dr. Satan (yes I am omitting their real identity) to cut my son’s ABA therapy hours with Sara Gilbert, BCBA from 30 hours/month to 10 hours/month. This decision occurred on August 10, 2012. Dr. Satan claimed that 30 hours of ABA therapy a month were no longer medically necessary for Rylan because he had made progress in some of his goals and because he claimed that some of the goals Rylan is working on are “social skills training” and thus do not qualify as medical therapy. We aim to prove that these claims are patently false and that it is medically detrimental for Rylan’s ABA hours to be cut so drastically.

We challenge, first of all, the very idea that any portion of ABA therapy is considered an “educational” service. This is an outdated idea that is no longer accepted in the medical community. In fact, in May 2012, the U.S. Office of Personnel Management ruled that ABA itself is a medical therapy not an educational service and thus should be covered by insurance. They made no distinctions about which parts of ABA should be considered “educational” and which should be considered medical. They declared that the entire course of treatment should be considered medical. This sets a powerful precedent that all insurance companies should follow. If the federal government recognizes ABA as a purely medical therapy, how can any insurance organization find otherwise? To do so is to blatantly ignore modern therapy standards for autism.

Even working within badscaryinsuranceguys' narrow definition of the “medical” portions of ABA therapy, Rylan should certainly continue to qualify for 30 hours/month of ABA with Sara Gilbert, BCBA. He displays self-injurious, aggressive, destructive and disruptive behaviors that meet all of badscaryinsuranceguys' guidelines for medical necessity. These behaviors are outlined both in Ms. Gilbert’s notes that follow and in the data logs we have collected on home behavior. Not only does Rylan display such behaviors, but we have seen a marked increase in these troubling behaviors since his ABA hours have been cut. He is slowly losing control and it is painful and terribly frustrating to watch since it never should have happened to him in the first place. 10 hours/month is obviously not sufficient to maintain the progress he had made in conquering these behaviors.

In addition to the increase in self-injurious, aggressive, destructive and disruptive behaviors, we are also seeing extreme regressions in positive behaviors. Rylan was showing remarkable progress in feeding behaviors with 30 hours/month of ABA therapy. He was picking up his own food and feeding himself and beginning to use utensils. I realize badscaryinsuranceguys does not believe feeding to be a “medically necessary” skill, but I contend that it must be considered as such when his feeding behaviors have regressed to a dangerous level. For many meals, he is now refusing to eat at all and we are forced to physically open his mouth and insert the food. He would never be displaying such a major regression if his ABA hours had not been cut. Obviously, it is medically necessary to eat and 10 hours/month of ABA is not sufficient to maintain his progress in this area.

It is difficult for me to imagine any circumstance under which 10 hours/month of ABA would be considered sufficient to maintain progress for any autistic child. This recommendation flies in the face of mountains of current research on ABA all of which concludes that the more hours of ABA a child can receive especially in the crucial early intervention period, the better the outcome for the child. I refer you to Vismara & Rogers’ “Behavioral Treatments in Autism Spectrum Disorder: What Do We Know?” (Annual Review of Clinical Psychology: 2010;6: 447-468), “A comparison of intensive behavior analytic and eclectic treatments for young children with autism” (Howard, Sparkman, et. al., Research in Developmental Disabilities, 26, 359-383, 2005), and Sallows & Graupner’s “Intensive Behavioral Treatment for Children With Autism: Four-Year Outcome and Predictors” (American Journal on Mental Retardation, vol. 110, no. 6: 417-438, Nov. 2005) just to name a few. I could find no respected scientific evidence that a mere 10 hours/month of ABA is effective for an autistic child to maintain progress in any of their behaviors.
badscaryinsuranceguys has ordered Rylan a medication assessment and individual and family therapies at the (omitted name) center in lieu of the 20 hours/month of ABA services they are cutting. We have complied with this order. We had an intake evaluation for individual and family services on August 20, 2012 and a medication assessment with Dr. Saint (not her real name, but it should be), a very well-respected psychiatrist who works for the center on August 28, 2012. The social worker at the center expressed reservations over enrolling Rylan into individual therapy as this service has not been proven to be effective for children with autism and as Rylan is completely non-verbal and only 3 years old, they were not certain how they would communicate with him to attempt to make progress (the only method that has been proven effective in Rylan’s case is ABA therapy and the center does not offer ABA). The social worker and Dr. Saint both agreed that Rylan has excellent family support as my husband and myself have been actively involved in his care and taken the time to educate ourselves on the most effective treatments for autism both in and outside of the home and they did not think family services were necessary for us, but Dr. Saint agreed to recommend us for such services since they were ordered by badscaryinsuranceguys. Dr. Saint found that Rylan does not need medication, but rather that continuing ABA therapy with Sara Gilbert, BCBA at the rate of 30 hours/month would be most beneficial for Rylan’s self-injurious, disruptive, aggressive and destructive behaviors as well as for his overall development and suppression of distracting and dangerous self-stimulating behaviors. She wrote a letter to that effect that I have included.

Rylan's pediatrician, Dr. Awesome (again, not his real name, but by golly he is awesome) has also written a letter ordering 30 hours/month of ABA therapy with Sara Gilbert, BCBA and identifying this level of service as medically necessary for Rylan to maintain progress. I have enclosed this as well.
As all of the medical professionals who have actually evaluated Rylan personally have found that 30 hours/month of ABA therapy is medically necessary for him to maintain progress and be able to function without endangering himself or others, I urge badscaryinsuranceguys to consider the overwhelming amount of data we have been able to compile to this effect and restore Rylan’s ABA therapy to 30 hours/month with Sara Gilbert, BCBA. On a personal note, you cannot imagine the pain of watching your beloved child slip away from you in a few short weeks and watching all of the progress he, you, and others have worked so hard for so long to attain quickly regress. Rylan has a history of regressions that we have battled mightily against and any change in his routine can bring on behavioral regressions that last for months and take many, many hours of both therapy and “homework” time to counteract. Unfortunately, this misguided decision has caused such disheartening and troublesome regressions for Rylan and as his parent and advocate, I find this completely unacceptable. Thus, we are appealing this decision and will continue to pursue restoring Rylan’s rightful therapy hours as long as it takes.

Thank you for your time and the consideration of our appeal.
Sincerely,


Megan Dittrich-Reed

14 comments:

  1. Good job, Megan. I hate this for you. It infuriates me. <3

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  2. Wonderful! Very well written, not that I expected anything else from you :)

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  3. Incredibly infuriating. I hope you get answers fast!

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  4. Wonderfully written. They better not drag their feet on this... Or I'm coming to TN and kicking somebody ;)

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  5. I hate that they're doing this but I am SSSSOOOO Glad Ry has such an articulate, devoted mama!!!!

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  6. I think it's a well-written letter, but I'm wondering for a business letter (because let's face it this is a business) if you should just stick to the facts.

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  7. I bet they don't get many well written, difficult to argue with appeals like this! Kick some ass!

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  8. rylan couldn't have a better mama. knock 'em dead.

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  9. Very articulate, poignant response to a ridiculous decision on their part. Go get 'em!

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  10. I considered not adding that bit at the end, but you know what? They should know the human cost of this decision. I did front-load the letter with all of the evidence we have that this service is necessary and all of the letters from the medical professionals are strictly factual, but I couldn't resist a bit of emotion at the end. I think they need to know that we are passionate about this appeal and not willing to give up.

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  11. A wonderful letter that I can't imagine they wouldn't reinstate his hours. I indeed think the end is what they need. Too often the people behind those policies and procedures forget that they are dealing with real people who need this help.I hope it works out well for you guys. I can feel the emotion and I can't imagine the regression he is going through. HUGS!

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  12. Megan Todd-ThompsonAugust 31, 2012 at 12:58 AM

    You are one amazing lady/momma/advocate/writer. I don't know how anyone could deny your articulate, evidence-driven argument. Lots and lots of hope that those insurance dudes do the right thing! Love you guys!

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