Friday, February 13, 2015

I had another post ready to run... but...

I need to get this off my chest.

Its asinine that a medical injury resulting in undeniable physical symptoms - is slapped with a behavioral diagnostic code.

This is what is at the root of the division in Special Needs families.  We have children who, like Dominic, experienced a vaccine injury that is CLEARLY a medical problem.  They have severe gut dysbiosis, they have seizure disorders, they have brain swelling, they have rampant food allergies, they have obvious histamine reactions, they have physical symptoms.   Unfortunately for us many of those "symptoms" are written off by the medical field as "autistic children just are wired differently".  Further,  some of those comorbid diagnoses are fatal.  A young man in our local Autism community who had a long term seizure disorder passed away this week unexpectedly, which is heartbreaking on many levels.

We also have children who have "classic" autism, from birth, who don't seem to have had any sort of injury.  These kids are truly "just different". 

And both sets of kids have the same Diagnostic code under the DSM.  ITs 299.0.  Autism.  A Mental Health disorder.

The reason this causes such discord between parents is that those of us who know our children are physically ill are doing the logical thing - trying to get them well, fix their immune systems, heal their guts, give them the chance for their brains to reroute.   And those who know their child is just different resent the implication that their child is somehow broken, which infuriates the ones who feel like if we say our child with a 299.0 is healthy we are lying.   Further, there is a growing contingent of high functioning autistic young adults who are equally infuriated by the inference that they are unwell. 

I am blessed to be friends with someone in the latter group of parents - her child was autistic many years before being vaccinated.  She fully agrees (because she watched it happen) that Dominic is clearly a vaccine injured child.  And encourages me to use that terminology because that is less offensive to her than me wanting to fix his autism.  My issue is that even if I call it vaccine injured, Dominic's diagnosis code remains 299.0.

So we have a nomenclature problem

Compounding that nomenclature problem is that due to the people who hold the red tape, only certain diagnostic codes are eligible for resources.  Autism is eligible.  "Vaccine injury" is not because its not a formal diagnosis.  So in order for me to get appropriate funding and therapies both in the school district and privately for Dominic, he MUST have a diagnostic code of 299.0.  When we first started at Alpine, I was able to get away with a dx of Acquired Aphasia.  That lasted 4 months before my company changed insurance providers and the only way that the new provider would cover therapies was with a 299.0 code.

Further interesting information is that on all IEP forms, there are boxes to check the type of disability a child has.  Autism is considered a physical disability by the school district even thought the ICD-9 code of 299.0 is a mental health code.

So we have to change both culture and coding.   Anyone know where to start to unravel this ball of yarn?

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