The State Attorney General Race and Autism

In my attempt to determine the stance of those running for attorney general on the insurance mandate issue, I contacted the campaigns of Ken Cuccinelli and Steve Shannon. Ken Cuccinelli's camp called and said he supported a rider. A discussion of riders in Utah highlights the severe limitations of this type of coverage:

First off, the rider does not help YOU...families who already have a child with a diagnosis. The rider would have to be purchased before a child is born. How many of you would have opted to pay extra for autism coverage before your child was born, just in case they happened to become diagnosed with autism? I can honestly say that I wouldn't have. Young parents are already faced with so many financial strains of having a new baby. The few that might buy into this plan would probably be those that already have autism in their family. So, we know that MANY children still wouldn't receive coverage for their treatment because their parents didn't buy into the rider. Second, the rider that has been proposed by the insurance companies only allows coverage for children from 2-6 years old. It only allows $25,000 a year for coverage, and there is a daily limit of $100. We know that these severe limits would not provide for quality treatment. There is no way that a full early intensive program could be attained with these limitations. Third, There are not riders for preemies, cancer or diabetes. Why is this medical problem not good enough for full health insurance coverage? Lastly, we in the autism community view the rider as a calculated distraction by the insurance lobby, and vote for the rider is a vote against families and children with autism.

This argument makes all the points I could every want to make on the issue of riders. There is no rider for HIV/AIDS, cancer, diabetes... why should there be for autism? Why should I pay premiums that offset the health care of those who smoke or share needles, yet have no access for my son when he has medical diagnosis through no fault of his or even my own? But, hey, its better than Bill Bolling.

Steve Shannon's staff had no idea of his stance on his insurance mandates. They probably don't need to know much, since that really isn't part of the AG's job. But they did tell me that Steve Shannon's brother had Down's Syndrome. He grew up in a home where he witnessed his parents advocacy for his brother and other kids like him on a daily basis and that, as staffers, they heard stories about his parents dedication often. So I guess I am going to do a little more research before Sunday. I think I am leaning Shannon.

All Politics is Local (Again...)

I hate election season. I really do. I internalize debates too completely. And when autism became a hot button topic in the local delegate race, I went off the deep end. It couldn't be helped. That autism bill meant the world to me and I hadn't completely understood on some level the difference between the committee vote and the end run vote that Bob Marshall attempted. I took it all very personally. No kidding... my child has autism. Moreover, our school services are in flux (another post for another time) and right after we got our EDCD waiver, our facilitator told us to start building case for keeping our new found services as the powers that be were looking at cutting the participation of children on this waiver. When you catch one break, three other things just crap the bed on you. It's almost a siege mentality and it has just been awful.

This election to me as the parent of an autistic child is about two things to me - an insurance mandate and education funding, in particular special education funding. Those strong in education are easy to identify as they are usually approved by the local education association. That would be the Democrats for the big three offices and the local delegate Jackson Miller. The insurance mandate is a little tricker. It is why I have not been enthusiastic with my support for Creigh Deeds. When I met him months ago during the primary run, he spouted the lobbyist line that markets will met the need. Health care reform, anyone? Yeah, right. Jody Wagner has been a strong supporter for mandates since the beginning, so she gets my vote. Bill Bolling has been vocal in his lack of support of insurance mandates, which is not pro-family or pro-life, so I couldn't vote for him in a million years.

After my Deeds encounter, I honestly wanted to vote for McDonnell, if he had any sort of positive stand on autism. I think he has probably changed his views on women (his daughters likely beat it out of him), which were too horrible to ever be put on paper, but I find it appalling that these conservatives are given the pro-family, pro-life stamp of approval just because they are against abortion. Being against abortion is a matter of political expediency. If they were for all life, they would ensure that all children brought in to this world, health or sick, developmentally typical or disabled, received proper medical treatment and care. Yes Virgina, that includes insurance mandates. I know many would consider this argument self serving, but what do people think the end game is? Do we want medical research into treating autism or detection inutereo so this children aren't born? Politicians serve so many masters that they can't be 100% intellectually truthful on anything. Then again, maybe I can't be either. I used to be a Democrat. Now I am single minded on one issue and honestly, as far as Richmond goes, no one party is better than the other.

My head is in such a wrong place. Politics, smolotics, I can't wait for Wednesday...

I owe you a post...

And I will get to it... but I will give you a little stat. A 2007 Harvard study estimate the cost of an untreated person with autism as $3.2 million dollar.

Any politician who does not support insurance mandates is just crazy... or has no sense of the economics of autism.

Another letter to the editor on the autism bill debacle...

At least I am not the only one who cares... InsideNova.com had another letter regarding the killing of HB1588 and the role of our local delegate Jackson Miller. I get really worked up about it when this issue comes up, thus my overly harsh comments of the other day in the comments page. I appreciate his support of the bill initially, but I truly hope he has learned a valuable lesson. No, not that he should not sponsor the next autism bill that comes his way. I hope he now knows that his first responsibility isn't to his lobbyists or party leaders, but to his constituents. He is a nice man, he is a bright man, and I am fairly certain that he is going to get the message when all is said and done. Right now, I must say I love the editorial page editor who is running these letters!!! He is giving voice to something that is so important.

In a related matter...

Even with her earlier press release, I still don't know Jeanette Rishell's stance on the issue of autism. Can someone enlighten me?

The Great Flu Vaccine Debate

Well, this week I get my flu shot. I am getting it at work, so I am fairly certain that I am getting the multidose with thimerosal. They have started the local shot clinics at the mall, but Jimmy will get the single dose at his doctor... without thimerosal. Jacob is what I am agonizing over now. I want him to get the vaccine, but I won't let him get his dose until I have mine and see if I have a reaction. Then I will decide where and when to get his. I can't believe I am agonizing over this as much as I am. I don't believe Jimmy's vaccine load caused autism in him. But I can't shake all the information/propaganda I am exposed to as part of this community. My niece in Texas has already had swine flu... she is recovering nicely and returning to school on Monday. But I still fear this particular virus. I am just starting to fear the vaccine too.

Oops... always check what you wrote before you hit send...

So I was commenting on a letter in the newspaper and I hit send before I finished editing it... it was a little heavy handed on the candidate. So I would like to apologize (I tried to tone it down in a second post) to Jackson Miller for being a little heavy in my comments. I think he is a great guy, but I care so passionately about getting kids with autism covered under insurance for their therapeutic treatments. I stand by what I said, but I could have said so more nicely.

Another one bites the dust...

Jimmy lost the second top front tooth today. And by lost, I mean lost. I got a phone call from Extended Care saying he was crying and fussing at his mouth, but wouldn't let anyone look. She asked if he had a loose one and I said yes. That must have been right about the time he lost it. No tooth recovered. Last time he tossed it into the lawn. So if he didn't swallow it, Mr. Bailey might just find it on the gym floor tomorrow.

All Jimmy wants for Christmas is his...

Funny...

The voice reminds me of Britney Spears.

Join me in standing with Dawn

Hi,

For two years, CIGNA has denied Dawn Smith treatment for her brain tumor. She's had enough, so she's heading to Philadelphia to confront CIGNA's CEO in person.

Dawn wants to make sure that CIGNA can't ignore her when she gets there, so she's been collecting hundreds of pill bottles with messages of support along the way.

But MoveOn is taking it up a notch. They're collecting thousands of statements of support online, putting them in pill bottles, and delivering them to Philadelphia in time for Dawn's big arrival. I just sent one in and it's being printed now. Will you join me in standing with Dawn at the link below?

http://pol.moveon.org/dawnmessage/

Thanks!

A Press Release That Came to My Inbox...

New Study Highlights Consequences Of Miller’s Action

Autism study emphasizes the importance of treatments Jackson Miller voted against covering

MANASSAS, VA - A study released today in the journal Pediatrics shows that cases of autism have risen in the United States and about 1 percent of children ages 3 to 17 have autism or a related disorder. Given this increase in statistics, that means that based on 2007 census data for Virginia, thousands of children in Virginia suffer from the disease.

In the 2009 legislative session, Delegate Jackson Miller voted against a bill to support requiring insurance companies to cover treatments for autistic children. After telling the parents of autistic children that he would support the bill, he ended up voting to kill the bill.

“This most recent study highlights the real concerns of parents with young children today. As more and more parents face the tough reality of dealing with autism, Delegate Miller voted against coverage of some of the most basic treatments for their children,” said Jeanette Rishell, candidate for Delegate.

Studies indicate that strong early intervention that would have been funded by insurance in the autism bill helps about 90% of autistic children to improve dramatically and about half reach normal or near-normal functioning. Additionally, the cost increase to insurance companies would have been negligible, approximately $1.50 per policy per month.

“No matter what excuses he gives, Jackson Miller's voting record on the autism bill clearly shows that when it mattered, he voted against supporting the families of children with autism. By killing the autism bill in the 2009 session, Jackson Miller has forced families with autistic children to bear the costs of treatment during an economic recession. A family should never have to chose between feeding their child or providing their child with necessary medical care,"
said Rishell.

“Jackson Miller will tell you that it was a ‘procedural vote’ but the parents of autistic children will tell you it was a stab in the back,” said Ilana Kaplan-Shain, campaign manager for Jeanette Rishell.

Of course, they fail to mention that he co-sponsored the bill in question. I will continue to give him partial credit for that. But he did vote against Bob Marshall's attempt to bring the bill to floor, which was a vote against the bill, my son, and other kids like him. I can't say that I am sure how Jeanette would have handled it if she had been presented with the same choice by Democratic leadership. But Miller's action on the bill, no matter how much I like him or respect him (and he has gotten some great stuff done for law enforcement in Richmond especially), his actions on HB1588 hurt me.

There is a debate on Thursday. I was thinking about ducking out for it. I am hoping that someone would care to join me. Send me an e-mail if you would like to go.

A Great Post...

It is true that the rising numbers have almost been met with a shrug by the American media...

An estimated 1-in-60 13-year-old boys has an ASD, but I don't believe the same is true for 43-year-old men. It is time to stop pretending that the autism crisis is not happening.


Read more at: http://www.huffingtonpost.com/david-kirby/do-you-believe-that-one-i_b_310378.html

Nice to see people held accountable in Richmond...

If I could vote against Tom Rust, I would.

Spitting?

Jimmy's newest behavior... spitting. Solely at school. I have seen him drool and be fascinated by it, but the boy is seriously, defiantly spitting at school. I don't know how this started, but I am hoping it is a temporary behavior. It's not a pleasant or desirable one, especially in this age of concern about bodily fluid. If you think people flip out when you cough or sneeze now...

A Good Breakdown of the Today's Number in Time Magazine...

1 in 100.

(And another good article from Time about autism and fevers... it is a phenomenon that we have notice in Jimmy, that he is a little more verbal and connected when he has a fever.)

The Origins of Autism (at least with my kid...)

A comment on my 1 in 100 post asked me what my theories on the cause of autism. As many of you know, I am not a big vaccine person, meaning that I don't think Jimmy's autism was principally caused by a vaccine injury. When we first saw Dr. Conlon years ago, he said that he thought autism was the perfect storm of speech delay, learning disability, mental illness, and an environmental factor, an X factor that hasn't been determined. His symptoms really began after his first ear infection at 9 months, following antibiotics. He was on antibiotics for repeated ear infections for nine months. Those were the months when everything became undone. There is some discussion of it as having a basis as an autoimmune issues and I think there is something to that and that unknown environmental factor is the trigger.

I have followed the vaccine schedule for both my boys. In hindsight, I might have thought about restructuring it. Never not giving him the needed vaccines, but maybe not all at once. Not because it was a cause, but because he is autistic and he reacts differently to medication. His behavior on antibiotics, for example, is more stimmy and he is more anxious and apt to tantrum. The thimerosol issue, for example, with the H1N1 vaccines. The single doses supposedly does not have the preservative. The multidoses does. I will seek out a single dose for my son as it just seems prudent. What doesn't seem prudent to me for my child is to not get the vaccine. As he doesn't have the same concept of personal space or understanding of hygiene, he is more at risk in someways for the flu and such. And knowing that he reacts as strongly as he does to antibiotics, I try to limit those as well. He still gets a couple of ear infections a year, even with his fifth set of tubes, but try to keep him as healthy as I can otherwise to limit the need for medication.

So those are my theories... As every parent does, I wish I had a cause so I could have more hope for a treatment. There is an extensive nuerodiversity movement online that resents the notion of a cure. I love Jimmy for who he is, but I hope with therapy and treatment, that he can live a more normal life. Right now, I don't see a future for him that includes things we take for granted - marriage, chlidren, a career, independence. That is what I want for him and why I fight.

Back from the Fall Jubilee

Jacob and I spent an hour or so down at the Fall Jubilee, running into friends galore, including Jackson Miller. As frustrated as I was about the comments attributed to him, I got his side, which never gets completely addressed in the paper. I have better understanding of that "bad bill" comment (not that he made it.) I didn't get to quote the latest statistics being discussed, but I am confident in his commitment to families with autism. Now if I can get him to rebel against his Republican leadership a little when things like Marshall's parlimentarian manevuer come up again, he vote for his constituents instead of his leadership. A girl can dream right?

And I just missed Bob McDonnell. Damn it.

It is almost official - 1 in 100 Children has Autism...

From the Huffington Post:

A pair of federally funded studies on autism rates is about to make news -- big news -- and it isn't good: It would appear that somewhere around one percent of all US children currently have an autism spectrum disorder. The rate is even higher among six to 11 year olds and among boys, according to data from at least one of the new studies.

If you are an expectant parent, or planning to have a child soon, you might want to sit down before absorbing these staggering statistics, recently released by the National Survey of Children's Health (NSCH), which is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services.

According to data from the 2007 telephone survey of parents of nearly 82,000 US children, the odds of a parent being told that their child has an ASD are one in 63. If it is a boy, the chances climb to a science fiction-like level of one in 38, or 2.6% of all male children in America.

But there was also some surprisingly good news. Enormous numbers of children who were told that they had autism went on to shed the ASD label as they got older, parents reported.


Read more at: http://www.huffingtonpost.com/david-kirby/autism-rate-now-at-one-pe_b_256141.html

The article is very vaccine oriented in causality, but I think the immunological point is a good one. The environmental trigger, on the other hand, could be more or not limited to vaccines. But 1 in 100. Wow. How many more children will it take before the leaders in my state and country take it seriously enough to devoted adequate resources to research into causes and cure or to require complete medical care paid for under insurance?

I think there is good news in that children shed the label of autism, but even that needs to be looked into. I can't imagine that Jimmy will, but of course it would be what I want most in the world.

Our ENT visit...

No infection, but a blocked tube. It's a relief, although the drops treatment course is a little longer in duration and not exactly any more enjoyable than the antibiotics. Jimmy is really cranky today and not transitioning well. A late arrival and early departure from school will do that (we had an afternoon appointment too.) He is starting to calm down, though he is still scripting his classmates and teachers name, in between going over electronic flash cards of animals, another delight he found on YouTube.