Friday, March 15, 2013

Angry With a Side of Sad

Originally posted here

First, let me applaud companies that give outstanding insurance benefits as part of their employee packages. I am grateful- beyond grateful- for having that luxury and for knowing that, if one of us becomes gravely ill, we will be taken care of. Peter has a good job that he enjoys and this is a part of his benefits package that has a heavy weight in his satisfaction with his pay, etc. So, lest anyone think I am bashing insurance coverage, I'm not, not in any way.

But I'm still pissed.

Since Bobby began speech therapy in September, we've been going back and forth with our insurance (which is administered via one of the big names in medical insurance) about paying for it. Yes, speech is covered... but ONLY if it is the result of an illness/disease/etc, not if it is a developmental delay. Initially, before his official Autism diagnosis, our doctor had 'prescribed' speech as a result of extreme prematurity. This was denied by our insurance because, ultimately, they felt that any speech issues resulting from his prematurity could be overcome with time and, thus, it was a developmental delay and not covered. With the Autism diagnosis, however, a new can of worms were opened and all his speech appointments were resubmitted with the codes for Autism as the diagnosis.

We learned yesterday that, once again, the panel denied the claims as a developmental delay.

Now, whether or not I believe Bobby meets the criteria for Autism, is autistic, is on the ASD, or anything else, is beside the point. At issue is whether or not Autism is a "developmental delay", which is defined as a chronological delay in the appearance of normal developmental milestones achieved during infancy and early childhood, caused by organic, psychological, or environmental factors.

As I'm writing a letter to appeal the decision, filling it with medical jargon that explains genetic causes, brain synapses firing differently, and a slew of other explanations for Autism and why it can impact speech so drastically and then am citing numerous organizations that compare Autism with things like Schizophrenia, Fragile X, and Alzheimer's because, like those, it is considered a neurological disability, I was overwhelmed with so much anger and sadness.

Disabled? I'm arguing that my son- my perfect, sometimes quirky, sometimes quick to lose it and often hard to understand because his language is poor, son... my perfect, wonderful baby boy- is disabled? That he has a complex neurological impairment? How do you, as a parent, say that your child- a child that you adore and who is perfect to you in every single way that he could be, in spite of (or maybe at times even because of) his challenges- is impaired and disabled? I've taken the Autism diagnosis and accepted it because I believe that, should it be that Bobby is on the ASD, it means nothing more than the color of his eyes or the tone of his skin... That it is just part of his genetic make up and part of what makes him who he is. And then there is this... This argument to try and convince our insurance company to cover something that he so drastically needs as a result of his genetic make up... At what cost? At the cost of the $125/hr a pop therapy? At the emotional cost of saying that my son is disabled?

If they deny the claim, we can appeal to Peter's employer. They are self-insured which, on the bad side, means they don't have to follow the PA law that states that services and therapies related to an Autism diagnosis be covered, but on the positive side means that a refusal of the insurance company means that we can go to the company directly. But that means more red tape... and a stoppage of speech services for Bobby. At this point, we owe over $3000 to his speech therapist if our insurance doesn't cover the appointments he's already had and we will have to stop taking him because we wont be able to continue to cover the cost completely. (He does get an hour of speech through the IU, so he wont be completely without help, but we've found that the private therapist we work with has made huge strides in his functional use of language versus what he is receiving from the IU.) It kills me... It kills me to know that the options are either argue that he has a disability and needs the services covered, or to not and know that we will have to stop his therapy.

I've read a number of things written by people on the ASD and they simply want to be acknowledged as the unique individuals that they are, people who struggle the same way neurotypical people struggle, albeit in different ways. They dont want to be called diseased or disabled or compared to people who are impaired by different medical issues. Would anyone compare Temple Grandin to someone with Fragile X Syndrome? Of course not, because they would be two very different issues. And yet... For the purposes of medicine and insurance, there seems to be no other option. It weighs so heavily on my heart.

Current research is pointing to something happening in the embryonic stage to cause neurological development to change in the autistic child. If this is true (and they are still researching soooo many avenues, who knows when we will find out), then this is who Bobby has always been... It's just who he is. And that is my perfect little boy, whom I wouldn't give back or change for anything in the world. I want him to have a life without struggle- as I do for Maya and, now, for Michael, but that comes with the knowledge that all of us struggle. There is nothing I can do, except give him the tools to mitigate his own unique struggles and to support him as he gets to his place of happiness. I want to do that. I want to give him the stars and the moon and the sun. I want to give him the therapies that allow him to coexist in a neurotypical world full of stimuli and speech and lights and sounds. I have to do that.

The question then becomes: at what cost?


Queenie said...

Maybe you should look at it this way: words mean different things depending on usage. In true regulation and guideline heavy insurance world, the word "disability" has a specific and important meaning. You must argue that to get him services, be,side that is their definition A.d you have to play their game. However, that does not mean you have to accept, acknowledge or utilize that word in your everyday life. Lots of words have one significance in legal proceedings, but not in real life. Do what you have to in the legal process, and live your own reality in life.

By the way, I have a relative with severe and profound physical disabilities. He has never lived one day of his life as a disabled person, nor do we consider him such. He can do, and does do, all of the things more able-bodied folks do. His mother insisted that was how he live, and so that's how it is.

Jen said...

My 3 year old son has Childhood Apraxia of Speech and our insurance doesn't cover his speech therapy. They lump it under developemental delays although it's a motor-planning neurological condition.

He needs speech therapy so we pay for it out of pocket. It stings but he desperately needs so we do what we have to do...

Good luck and I hope you're able to get something worked out!

schnitzelbank said...

You have to understand the slippery slope this is. If they agree to pay for your son's therapy, the insurance company has set a precedent to pay for everyone else's. I'm not saying they shouldn't. They won't because of the larger costs involved. I'm on a medication that costs me $300/month for the same sort of thing: if my insurance co agrees to pay for this med, all the other patients will want it, too. So instead, they offer to pay for a "similar" drug, which actually (chemically) isn't similar at all-- it just shares one key ingredient. After a year's worth of appeals from both myself and my specialist (who happens to be the leading nat'l researcher for my disease), the insurance company finally admitted that "an equivalent drug doesn't have to be chemically equivalent. We may call it equivalent for purely economic reasons." And there you have it -- insurance companies *do* practice medicine as they see fit, not in line with what is medically sound, but by what is financially in their favor. They are able to make the determination about what is better for your son-- access to resources, or "take an aspirin, it's the equivalent."
And this is why I support universal health care. Health should be equally available to all, not just the privileged few. Access to good health care is a human right, not an exclusive entitlement.
I doubt your appeals are worth the paper they are written on. Mine wasn't. It didn't matter that my doctor said this was medically necessary, and the only remaining FDA-approved med approved for my disease. The bottom line is their only concern. Sorry.

Michele said...

That's awful about your medication not being covered. My BFF had a similar situation.

We are hopeful with our appeal because the pharma co my husband works for will review it and they have a good reputation for giving weight to their employees. But it is still a time consuming and irritating procedure.