While we were in the clinic room, we discussed the newest label we have for Scarlett: Intellectual Disability. In the old days - and still in many federal, state and other documents - it was termed as "mental retardation". I'm not sure the change in phrase helps the meaning.
This stems from our ongoing battle to secure medical insurance for Scarlett. You can read more about our struggle with that here, but here's the basics: Scarlett has been covered by Medi-cal (California's Medicaid) for a while, thanks to our meager income throughout her first treatments. She qualified based on her qualification for Supplemental Security Insurance, which is based on our income. Once I began working again, we no longer qualified, so we need to find a new form of insurance to cover her. She is impossible to insure without a group plan (where pre-existing conditions are accepted by federal mandate), or by government coverage. We currently pay for COBRA from Chris' old job at Starbucks because it is nearly half the price of insurance through my school district.
Heck, if I were an insurance company (thank godness I'm not!!), I wouldn't want to take her, either. Her current chemo, per the EOB's we receive, costs about $25,000 a month (and is not FDA approved for pediatric patients, so is therefore not going to be approved by most insurance companies). Her MRIs every other month are around $27,000. A shunt malfunction can happen anytime, and has fun anywhere from $50,000-200,000 or more, depending on what is needed. We get a shipment of medial supplies for feeding her every month. She is getting new custom foot braces on Tuesday - I'm sure those don't come cheap. And, of all things, the kid is determined to eat her $5,000 hearing aids.
After my last post on this, some readers and friends suggested we look into Institutional Deeming (ID). By getting a doctor to certify that Scarlett is in need of such care that she would otherwise be institutionalized or hospitalized, she can qualify for a whole new round of services that are long-term and independent of our income, including full-scope oncology, therapeutical and other medical services. We had heard about ID from a family at camp, but their description made it sound like something far outside of Scarlett's level of need - fully wheelchair bound, non-communicative, etc. Now, however, we better understand that ID is for several long-term diagnoses. This sounded like the solution for us, and so we have been working for months to make it happen.
We learned that, in order to qualify for ID, Scarlett would need to first qualify for long term services through the Regional Center, a county service for children with special needs. She is currently a Regional Center client in their early intervention program, but on her 3rd birthday, in just a few months, she will be cut off from those services. Regional Center provides Scarlett with her fantastic preschool program at CEID. To keep Regional Center services past age 3, we needed to Scarlett to qualify for one of the few categories of disability that Regional Center serves.
The categories are pretty clear:
1. "Mental Retardation"
2. Cerebral Palsy
5. Anything that looks or sounds like mental retardation but cannot actually be called such (a catch all for the myriad of developmental disabilities that may need services.)
Since she is not epileptic or autistic (despite having syptoms that echo both), and is not technically diagnosed with cerebral palsy (though we have gotten previous services based on her similar presentation), she had to fit the "retarded" categories. And yes, the documentation, social workers and brochures are all still using "mentally retarded" to describe this population. There is no special category for "has half a brain left after massive tumor, stroke, shunt malfunction and chemo toxicity. Cute, social and very well cared for - just need insurance."
As usual, our team of doctors is on board to make it happen - they are Team Scarlett through and through. And so today, the key neuropsychologist evaluation came to us, describing how Scarlett fell into the .1 percentile - lower that 99.9 percent of children her age, in cognitive, language, motor and adaptive behavior development (I take it as a personal victory, however, that she scored at 2% in Social and Emotional functioning - her strength!) Then, she made sure to note, in bold letters, Scarlett officially "meets the criteria for intellectual disability."
I am not sure why this hit me so hard today. This is what we wanted, what we asked for, what we desperately NEED to get her what she needs. But it came down on me like a ton of bricks. It seems like such a loss for her, yet another hit to someone who has already taken so many. A small part of me wanted the neuropsychologist to come back to us, saying "There's just no way - she scores too high, is developing so fast. You'll have to come up with something different." I wanted, just once, for the better sounding, easier to hear, easier to accept diagnosis. But, no. She's mentally retarded, and forever will be.
A part of me has been waiting, all this time, since the first awful day she was diagnosed, for this to be "over". After her first surgery, I thought it might be over, but then came chemo. After the first year of chemo, I thought it was over, finally, and "all" we had to do was therapy, but eventually, she would come out somewhat "normal" and that all of this would be part of her past, not her forever. Then the tumor came back, that bastard. Now it feels like we will never, ever be free. It lurks, no matter how far out, and I don't think I will ever feel safe again. And now, there is a document, on my computer, my phone and in every file in every office we visit and attached to her social security number in the state and federal databases (if those even exist, I guess) that says she is permanently, irrevocably damaged.
And I know that, at the heart of this, it is just a label that gets her name in a system. It puts the right check mark next to her name that releases all the benefits that she deserves. For that, I am truly grateful, because I honestly do not know how we would have covered her otherwise. But it hurts, and I am tired of taking on the hurt.
As usual, I will try to focus on the positive: she should easily qualify for Regional Center services. That means we can get In Home Supportive Services (small payments to us as her full-time caregivers), respite care (trained professional relief for small periods of time) and, in the end, institutional deeming for Medi-cal. This may take a few more months, but the wheels are in motion, and that is a relief.
But, as my own therapy today, here's what I see: