LIFE IS A SPECTRUM / Sharron Angle is just a figment of my autistic child's imagination

"Take off the mandates for coverage in the state of Nevada and all over the United States," [Nevada Republican Senate candidate Sharron] Angle says in a video from a speech she gave in 2009 at a Tea Party rally in Winnemucca. "You know what I'm talking about. You're paying for things that you don't even need. They just passed the latest one," Angle continues, then makes a reference to autism, using her fingers to make quotes around the term that describes a range of developmental disorders. "Everything they want to throw at us is covered under 'autism' so that's a mandate that you have to pay for...” --Las Vegas Review-Journal, Sept. 24, 2010

Apparently, Sharron Angle doesn't believe in autism. Or maybe she's like that character Joey from Friends and doesn't actually know what air quotes mean.

Either way, I don't understand her point: That autism doesn't affect enough children for it to be worth the cost increase in premiums that cover it? Well, I'm sure that premiums would be much lower if they excluded all diseases, disabilities and illnesses. Pure profit. Cover nothing; just charge premiums.

I think that some people in the country are under the impression that the second mandates when into effect – and Florida passed one of these laws – people were just beating down the door to get an autism diagnosis and jump on board for some fun, free speech, occupational and behavioral therapy. There's no better way to spend your day than sitting around the lobby of the speech and hearing clinic. I can't get enough of that place and its turtle tank.

Florida's law is a good piece of legislation that helps a lot of people. But not us. We're one of those families that slipped through the (rather large) gap in the law. My husband works at a company with fewer than 50 employees, so despite the fact that as a smaller group we pay higher premiums and higher deductibles, autism is not covered. (For some reason, our deductible went up $1,000 this past year, though.) We can, luckily, get some speech and occupational therapy by using a medical diagnosis code of “static encepholopathy,” provided by our neurologist.

As I mentioned last week, we looked into the option of switching to Florida KidCare. It's not one but actually several different programs. During the first call, a customer service rep told my mother that yes, all autism therapy was covered by KidCare.

On further investigation, though, we discovered that's not true. The good news: If your income qualifies you for a subsidized premium (about $20-30 a month) through Children's Medical Services, everything is covered – speech, OT, ABA therapy. If you think you would qualify and would like my contact at CMS, please email me privately at She says that she can get you enrolled in 24 hours. (I don't want to post her email here, because I don't want her inundated by Robocommenter with ads for buying cialis online.)

The bad news: If your income doesn't qualify, you cannot buy into this program. You can't even pay an unsubsidized premium.

The good news: There is a KidCare plan that anyone can buy into and the premiums are reasonable (about $159/month) – Florida Healthy Kids.

The bad news: ABA therapy is not covered under this plan.

The good news: You can apply for a Medicaid DD waiver to help with costs of medically necessary therapy not covered.

The bad news: There is a three-year waiting list and it's getting longer every day. You can apply to be bumped to the top of the list, but I was told by my contact at CMS who was kindly lowering my expectations, “They're dealing every day with homeless children and those in life-threatening situations.”

Wow. It had never really dawned on me that there are homeless disabled children out there on the streets, but of course there are. Of course there are. There are homeless autistic children. There are autistic kids in the foster care system. There are autistic children battling other diseases as well. There are autistic children whose parents can't or won't advocate them for any number of reasons.

I still haven't found out how to get coverage for ABA therapy, but we're exploring some options. I have, however, had my eyes opened...

While I was wallowing in my hate hole last week, there were parents out there hoping and praying to God that one day they would end up as lucky as me -- living with a roof over their heads with plenty of time and money and food for their kids and the opportunity to give them the best kind of therapy available anywhere: the loving support of a happy home.

So I'm out of the hate hole – though I am sparing a little bit of intense dislike for Sharron Angle and her air quotes around “autistic.” If she doesn't believe in autism, I'd love to put her in a room with Billy and challenge her to get a word in edgewise during one of his recitations of Alvin and the Chipmunks.

But when I was ranting on Facebook about Angle and her wingnut disbelief in autism, my friend Brian responded succinctly, “That's OK. I don't believe in Sharron Angle.” Tru dat.

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Med. Waiver

Thanks for that kick in the pants, Lynn. I hadn't done it yet -- I've been feeling sort of like a balloon with the air let out since last week. But you're right: the last three years have certainly flown by. And it's not like we're not going to need the money in three years -- as much as I'd like to think our finances are going to skyrocket :-) I'm going to get that process started this week.

Sharron Angle can kiss my fat ass

Did you put yourself on the waiting list for the waiver? Even though there is a 3 year wait, the waiver takes them until they're 18 or 21 and three years goes by awfully fast. Don't feel guilty like you are taking someone's spot that needs it more...that wouldn't happen. In IL they said that I would never qualify and then out of the blue they did a lottery and I got it. So you never know...

I never get emotional over ANYTHING on the Internet. Never.
But when you talked about homeless and other unfortunate children with autism and other diseases, I got a lump in my throat and a little misty-eyed. How difficult it must be for them not receiving therapy and way to possibly make their days less frustrating, in addition to not understanding WHY they can't express themselves. And for those with severe autism, possibly being abused by parents or caretakers not having the patience and education to know why their child acts the way they do.

It breaks my heart to know that children are subject to either scenario, and so many more. It's so hard to want to love all of them yet feel so helpless because you can't.
You can only speak out for the disease and those unable to find their voice in hopes it will change what services are available to them. To potentially make their suffering a little less.

Oh, The Irony and Why I Won't Be Ranting Today

The autism mandate does not help us either. I work for FSU, but as a self-insured employer, FSU is also exempt from the autism mandate. Oh, the irony!! FSU has an growing Autism Institute, but it will not cover speech and language therapy for the autistic children of its own employees through its own speech clinic!

It is not all bad news. As an FSU employee, I do receive a discounted rate for speech therapy and the remainder that is paid out of pocket can be deducted from my Medical Reimbursement Account. Which means it is from pre-tax dollars. Which means I am getting a break from the federal government. You see where I am going with this...

I have to stop now. Every time I try to finish this post, I begin to devolve into a rant most unbecoming of your blog :). And life is too short for ranting. Better to spend my time researching Florida's political candidates and getting my vote out for November 2.

Prestigious Award

Amanda, I bestowed upon you an extremely prestigious blogging award. When you get a chance, check it out at my blog. Unfortunately, there is no cash prize that accompanies this honor.

Excellent Post--Again!

Where I live, you can get ABA provided for free through the Country Regional Center. It takes forever to go through their process, and it CAN be difficult to get accepted (they won't take kids with Asperger's or PDD-NOS diagnoses). It took us almost a year to get accepted in. But we chose an agency we love that is 100 percent funded through them. That's the good news. The bad news is because of limited budget resources, they only provided ABA for 2-3 years at most (but that's huge). We're getting kick out of ABA after only a year, but they claim our daughter is really done with it an can't benefit from it any more. After reading what you posted, I feel blessed to have even have gotten the year!

i don't believe in her either!

i wish i lived in NV so i could not vote for this idiot.

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