LIFE IS A SPECTRUM
"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 AmandaBroadfoot@gmail.com. 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.
We made a few changes to the website over the weekend. I say "we," when I actually mean that Dave made changes to the website while I did 45 tons of laundry. That is apparently what "we" did instead of taking down the "Happy Birthday, Princess" decorations, which are now in danger of becoming a permanent part of our interior design. Well, my birthday is in May so I suppose I could just have the world's first 39-year-old Disney Princess party.
At the right, you'll find a list of the most recent blog posts, as well as what people have had to say about them (under "Comments"). If you want to make a comment, just press the "New Comment" button under a blog post and let me have it!
"News" is a new section we've added, because I got tired of searching for "Autism" and "News" every day, and Dave found this cool site that would let me stream it all directly to my blog.
And on that note, Friday is World Autism Awareness Day, a kickoff to April being Autism Awareness Month.
I know I'm opening a can of worms here, but I have to say that I'm kind of ambivalent about the whole "awareness" months and days and ribbons. Not that I think any of it is bad. I just don't know if that's the best use of money and energy.
We could have a thousand people in Tallahassee get together and do a walk for autism awareness. And that would make a great photo on the front page of the Democrat. And we could all wear ribbons that look like puzzles ... and then what?
While we're doing a walk-a-thon, school budgets are getting cut and there are already fewer speech and occupational therapists servicing more autistic kids in the school system than ever. Or not servicing them, because they just don't have time. Billy, luckily, is getting exceptional services from his school system, but I know that there are backlog of kids in schools across the country, waiting to be evaluated before they can even begin to receive treatment. I've spoken to their worried, exhausted, frustrated parents. Believe me, they're aware.
We can raise more money for research, but if we keep researching the same thing over and over again (vaccination-autism link, which has been studied more than 20 times by the CDC alone), then how much progress are we making? I cringe at the thought that Autism Awareness Month is going to bring a host of new opportunities for Jenny McCarthy to preach her hysterical non-science to unsuspecting crowds.
And sometimes "awareness" seems like a consolation prize: We can't cure it. We don't have the funds to adequately treat it. Researching it is a political snakepit. So we're going to hold a rally, name a month, and make everyone aware of it.
As I write what sounds, even to me, like a cynical, smug excuse for doing nothing, I can hear a little voice in the back of my head asking, "So smarty-pants, what are you going to do? What's your big idea?" For some reason, this voice always sounds a little bit like Pee-Wee Herman.
I didn't have a plan when I started writing this, but now I've kind of talked myself into a corner, and I'm going to make a commitment to you: I'm going to call and write to every local, state and federal government official I can find until I get some answers as to why we don't have more therapists in the school system, and an expedited system for getting kids into treatment. For many families school-provided therapy is still the only autism treatment to which they have access.
I'm going to share the information I get with you and maybe, together, we can all figure where the logjam is and who I need to call or write to next month. Because as much as I'd like to think that Yoko Ono, our new World Autism Ambassador, is going to get everything sorted out by April 30, I'm pretty sure I'll still be making phone calls by the time the November mid-term elections roll around.
I'm totally open to hearing the opposing point of view about the necessity of Autism Awareness Days and the important strides that have been made because of them in the past. I'd be happy to find out that I'm completely wrong on this one, because I want to think that the time and money that's going into promoting this is well worth the effort and resources.
The Grinch Who Stole Autism Awareness
From Amanda
Some thoughts on research
From Amanda
World Autism Awareness Day
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I sat in the corner of the speech therapy room yesterday, holding my breath. Billy was cradling a baby doll. He carefully dipped a washcloth into a tub of water and then dabbed it on the "baby's" head. A small trickle of water ran into its eyes. "She needs a towel!" Billy informed us. "Wipe her eyes!"
And he did. Then he laid the baby down, covered it with the towel, and began to recite Good Night, Beach, one of his favorite bedtime stories. He reached for the toy bottle and gave it to the baby. Then he reached for the toy juice bottle and mimed pouring it on the baby's head. We all laughed, including Billy. So he did it again.
I couldn't believe it. My child was engaging in normal, imaginative play. When offered three choices -- a toy farm, Playdough, and the baby doll -- he chose the baby doll and acted out routines with which he was familiar: bath, story time, bedtime, feeding.
This is huge for us. It was only a few months ago, when we started Floortime therapy, that the most interactive play I could really get with Billy was opening and closing doors with him. We did a lot of opening and closing doors.
He liked his toy fort. And he liked his toy barn. But mostly what he did with them was open and close the doors. If I tried to introduce some of the toy figures and engage him in interactive play, he would just turn his back on me and move on to something else.
When I questioned my fellow Floortimers -- a Yahoo! user group composed of parents, caregivers, therapists and others who are engaged in Floortime therapy -- about it, they advised me, rightfully so, that he simply wasn't ready for this level of play yet. Take it back down a step, they advised, follow his lead, and then work your way back up.
So we opened and closed doors. And Dave created a game called, "Open the latch, Daddy!" He placed his hand on the door, making it impossible for Billy to open until he asked for it. We opened and closed doors on the fort. And eventually, we had the Mickey Mouse character demand, "Open the latch, Billy!"
Slowly, Billy started allowing us to introduce the toy figures into the fort game. Then one day, I caught him acting out, word-for-word, an episode of Mickey Mouse Clubhouse, using the fort and the toy figures. When I tried to join in, he backed away. But after a week, he'd let me play too, to assume one of the characters, as long as I didn't change the story. There are not words to describe how much I came to hate the episode, "Mickey's Color Adventure." I dreamed about it.
But then one day, something clicked and Mickey was forgotten. Instead, all his figures had a jumping contest. Uniqua from the Backyardigans won almost every time, for some reason. "Yay! She did the highest jump!" he told me. And Batman was universally crap at jumping. Puff the Magic Dragon won a couple of times, but he had wings, so he was kind of cheating. Day after day, we had jumping contests on the fort.
He began to call the figures by name: Mickey Mouse, Uniqua, "the dragon," and for some reason, known only to Billy, one of the plastic Little People, a blonde girl wearing a hat, introduced herself to the others as, "Hi, I'm Uncle Wes," in a deep, gruff voice. I have no idea why he decided this character was his Uncle Wes, who is actually tall, dark-haired and bears absolutely no resemblance to a blonde little girl, but nonetheless, in our house, Uncle Wes she is.
And for the first time in the past two months, he developed an attachment to a stuffed animal, a stage most children go through at a much younger age. Tah-Tah is named after the teddy bear in the cartoon "Ira Sleeps Over," and Tah-Tah sleeps with Billy every night and travels with Billy to Nan's house whenever he "sleeps over." In the last couple of weeks, Tah-Tah has been joined by Eggbert, a large colorful catepillar; Too-Too, Tah-Tah's little brother; and Eeyore from Winnie the Pooh. Each has a place on Billy's bed, and both Mama and Daddy have to kiss them all goodnight each night. I can hear him talking to them over the baby monitor sometimes, telling them stories and singing them songs. Sometimes, he tells them, "Too-too! Quiet! It's night-night!"
I know all this probably sounds like mundane childhood play to the parents of normally developing children, but to put things in perspective, a year ago, Billy was running over the baby doll with his Big Wheel, and he rarely said anything that wasn't repetition of a book or TV show.
In addition to practicing Floortime at home, both Billy's speech and occupational therapists at Tallahassee Memorial Hospital take a developmental approach; both are Floortime-trained. So his therapy sessions look a lot like play -- in fact, they are play -- where we try to create the desire to communicate, rather than teach him specific phrases to parrot without understanding their meaning.
We are so excited about Billy's growing interest in imaginative play that we keep adding things to his strange little town that includes a medieval fort, a carnival, an airport, two farms and a train station. It's kind of like a soap opera town. And now he also has a little play house with a Mama, Daddy and baby that allow us to act out routines and social situations and practice things like saying, "Hello" and "goodbye."
When I was looking for a doll house online, I found tons of sites where parents were demanding to know whether playing with a doll would turn their son gay. Seriously. When I was a kid, one of my favorite toys was a Easy-bake Oven, and I certainly hope my son has a stronger interest in babies when he grows up than I now have in cooking.
But after Billy had bathed and fed the baby and put it to bed, he had the baby jump back up and announce, "Baby wants to play barn!" So we took out the barn, and the cow, horse, sheep and chicken had a jumping contest. The cow won.
Playing Daddy
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i don't believe in her either!
Saturday September 25 2010 03:05:35 pm
a mom
i wish i lived in NV so i could not vote for this idiot.
Excellent Post--Again!
Saturday September 25 2010 04:02:34 pm
Cheryl D.
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!
Prestigious Award
Saturday September 25 2010 08:12:21 pm
Big Daddy
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.
Oh, The Irony and Why I Won't Be Ranting Today
Sunday September 26 2010 10:39:47 am
JDinTLH
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.
Monday September 27 2010 01:57:11 am
Brianna
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.
Sharron Angle can kiss my fat ass
Monday September 27 2010 09:30:25 am
Lynn
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...
Med. Waiver
Monday September 27 2010 12:15:42 pm
Amanda Broadfoot
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.
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