I don't normally post stuff like this, because we're all about lighthearted jocularity here, but Mom called my attention to this link for Autism Speaks:
The band, Five for Fighting, is generously donating $0.49 to Autism Speaks for *each time* the video is viewed . The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal. Click on link to view.
Even if Five for Fighting makes you dry heave, like they do me, go ahead and click the link a few times.
While I was watching the video in question, I realized I hadn't given with an update on She Who Shall Not Be Named in a while. At least, not since I last talked about the passage of HB 1919 and its subsequent signing by Gov. Perry. When last we left our Legislative follies, the bill mandating insurance coverage for ABA was soon to become the law of the land, and all was right with the world, yes?
Yeah.
Let me tell you a story. A story of something called the Employee Retirement Income Security Act of 1974, or ERISA. It was originally enacted to protect employee retirement plans, but has since morphed into a body of legislation regulating benefit plans as a whole. One section in particular, Section 514 to be exact, preempts state laws that relate to any benefit plan. Specifically, state law cannot operate on self-funded insurance plans unless the plans opt to allow it. As of right now, both The Wife and I are covered by self-funded plans (as are some 55% of workers in Texas), and as of right now, they're electing not to cover ABA. Quelle surprise.
My reaction, upon learning this, was to go out and cause some severe property damage. All those blog posts exhorting you good people to contact your representatives, all those letters to the editor, all those fucking phone calls...it felt like pissing in the wind.
That was until I found myself talking to another parent at SWSNBN's school. We discussed statistics for a while, when I found myself thinking, Where are the other kids? If we go by the oft-quoted statistic that 1 in 150 children will be diagnosed with autism, and knowing that Houston is a city of over 4 million people, then there must be thousands of kids in this area alone on the spectrum. Where the hell are they? SWSNBN's school has maybe 20 kids in it, and if the number at the handful of other, similar schools in the area are comparable, that means that probably 90% of children with ASD in Houston aren't getting comprehensive therapy.
That put things in perspective a little bit. After all, we still have all the advantages I listed when I first brought all this up: good doctors, unswervingly fantastic friends and family, employers who are very accommodating when it comes to her schedule, and plenty of resources. I'll be honest; I make more money than I ever thought possible when I was waiting tables and tending bar after college, and we're able to pretty much cover the cost of SWSNBN's school through a combination of belt-tightening and loans. Others aren't nearly as lucky.
Which is why I know that all that work wasn't completely for naught. The Wife and I - for now - may not be able to take advantage of HB 1919 (and we remain in contact with our benefits folk) - but somebody out there is able to get their child the help he/she needs because of it. And while that doesn't totally keep us from inwardly wincing when we see our friends buy 50" HD TVs and add on to their houses, it's definitely something.
As for our little girl, she's still making progress. It's incremental to us, but friends and family who don't see her on a regular basis insist she's improved dramatically over even a year ago. We're doing everything we can: ABA, speech therapy, the GFCF diet and nutritional supplements. Her receptive language skills are still just fine, provided you can get her attention, and she's not silent - like the girl in that video - by any means. The frustrating part, for her as well as us, is her continued inability to express herself effectively. The Wife and I continue to hold out hope for another Great Leap Forward in that area, to coin a phrase.
You can see it in her eyes every so often, the kid she used to be. It's so overwhelming sometimes that I almost want to shake her to see if I can get some misfiring synapse to come back on line. Until such actions are proven to have a positive effect I'm not previously aware of, however, we'll just have stick with what we're doing.
Thanks again for all your thoughts and support.
Your family is in my thoughts, and every time I see SW, I worry a little bit less.
I promise to click on it often and pass it along, thanks for the update. My best to you and yours. You have made a difference to other families and I am sure they don’t know who you are, but they are eternally grateful!
So glad you shared this link with us, Pete. I have two children fighting through a host developmental delays — and we relish those Great Leaps Forward as well. Though my kids are not autistic, the delays threaten their ability to lead full, active and independent lives — and if we ‘waited’ my kids would be years behind the curve. Thankfully we live in New York state where the Early Intervention Program is well-funded and staffed with a number of service providers; insurance companies are not much of a barrier to care. We pay outlandish taxes here, but between state-run EI and the ongoing services available through the local school districts — the money has been well spent. Last night, my wife and I figured that on average these state-funded/mandated programs would have cost us at least $30,000 per year — and in many years, much more than that.
EI works. Consistent, intense therapy works….and it helps kids grow and mature into productive adults. So while we’re battling for insurance reform, pls dont forget to watch your state assemblies for opportunities to create stronger EI programs.
As an aside, what drives me nuts about insurance companies is that they increasingly cover and encourage preventative care under the guise that this helps defray longer-term, chronic illnesses…..for example, many don’t charge for physicals or immunizations. For some reason ($$$$!) these outfits don’t view intensive therapies in the same light — which is borderline criminal when you note the spike in autism and other maladies that cause developmental delays.