All the finger crossing worked!!!

Way to go everyone that sent good thoughts (or called your Senator/Representative) to Jefferson City!! This afternoon, with only 2 days left in the session, the Missouri General Assembly passed HBs 1311 & 1341! Insurance providers will now be required to provide diagnosis and treatment coverage, including up to $40,000 of ABA, to children up to 18 years old. This is a huge step for our state, the families, and most importantly the children that will benefit. After 3 years of persistence, a special panel, and lots of testimony on both sides, HBs 1311 & 1341 outline the strongest legislation proposed to date on this issue in our state. Way to go to the champions of this issue: Reps. Scharnhorst, Cooper, Grill, and Jones and Sens. Rupp and Schmitt, among many others.

Listen to what these champions had to say before the final vote was taken:
Rep. Scharnhorst
Rep. Cooper
Rep. Grill
Rep. Jones

If the votes are there, so is the Governor's support

As declared by Gov. Nixon in a December 2009 press conference, this was supposed to be the year Missouri passed autism insurance reform. It seemed like the stars had aligned with support also announced by the Speaker of the House and continued previous support from senate leadership. The strongest bill yet in the three years of efforts was drafted after recommendations made by the specially appointed House committee.
It is always nice to know the governor is behind an initiative so that there is comfort in the fact that if the votes are favorable in the chambers, there is no question it will be signed into law. With only one week left for the House and Senate to come to an agreement on a bill, chances for reform may be small, but not impossible.

News article covering the December press conference

Disaster in the details

It has been a while since my last post due to the fact that is has been a while since anything new took place with the autism bills in Jefferson City.... On Wednesday, Julie and I visited the capital and spoke with the Chairman of the Healthcare Policy committee about the bills. Although the HB was not assigned to this committee this year, Rep. Cooper has still been very involved in the efforts. Unfortunately, the detail differences between the house and senate bills have not been worked out and as a result, two good efforts at reform will likely produce no results. With only one week of the legislative session left, last minute efforts are now focused on amendments to add small pieces of the reform bills on to other and hope they will not be the straw on the camel's back that kills the omnibus bill. Keep your fingers crossed!

Looking for a compromise

The upper and lower chambers in the Missouri legislature agree that autism insurance reform needs to take place. Both have passed bills that would require insurance companies to cover diagnosis and treatment of Autism Spectrum Disorder for children. However, over the last 3 years bills drafted have differed mostly on the age limit for coverage and the capped amount that insurance companies would be required to cover. This year is no exception, with the Senate bill proposing both higher age limit and capped amounts. The differences have halted the momentum of the issue. A House committee is reviewing the Senate bill, but a Senate committee has yet to do the same with the House bill. Meanwhile, insurance lobbyists that are opposed to the reform mandate seem to be fueling the fire, discouraging either side to compromise. Unless common ground can be decided on, the issue will go another year without reform.

Read the Missourian's coverage of the latest actions

AutsimSpeaks compares the two bills:

Senate Bill 618 - Sponsored by State Senator Scott B. Rupp (R-2)

House Bill 1311 - Sponsored by State Representative Jason Grill and Representative Dwight Scharnhorst (R-93)

• Would require health insurance companies to provide coverage of the diagnosis and treatment of autism spectrum disorders
  
  
• SB 618 requires coverage for individuals under the age of 21
  
  
• HB 1311 requires coverage of ABA for individuals under the age of 18
  
  
• Insurance coverage for non ABA related therapies does not have any age limits or monetary caps placed on it under under the passed House bill
  
  
• SB 618 requires coverage for applied behavior analysis (ABA) therapy is subject to a maximum benefit of $55,000 per year
  
  
• HB 1311 requires coverage for applied behavior analusis (ABA) therapy is subject to a maximum benefit of $36,000 per year
  
  
• Coverage of treatments will be provided when prescribed, provided, or ordered for an individual diagnosed with autism by a licensed physician or a licensed psychologist in accordance with a treatment plan
  
  
• Under this bill, health insurance companies would be required to provide coverage of the following:
  • Diagnosis of an autism spectrum disorder - meaning medically necessary assessments, evaluations, including neuropsychological evaluations, genetic testing, or other testing to determine whether an individual has one or more autism spectrum disorders
  • Habilitative or rehabilitative care - meaning professional counseling, guidance, services, and treatment programs, including applied behavior analysis (ABA) and other behavioral health treatments, that are necessary to develop, maintain, and restore to the maximum possible extent an individuals functioning
  • Pharmacy care
  • Psychiatric care
  • Psychological care
  • Therapeutic care - meaning services provided by licensed or certified speech language pathologists, occupational therapists, physical therapists, or social workers
    
    
• HB 1311 contains an opt-out/waiver from offering ASD coverage if the employer demonstrates by actual experience over any consecutive 12-month period that the cost of providing coverage has resulted in a 2.5% increase in the health plan premiums
  
  
• The bill does not affect any obligation to provide services to an individual under an individualized family service plan, an individualized education program (IEP), or an individualized services plan
  
  
• The bill applies only to state regulated insurance plans. It does not apply to self-funded insurance plans, as these plans are regulated by the federal government under ERISA law
  
  
• If enacted, this bill would take effect on August 28, 2010

Happy World Autism Awareness Day!

The United Nations has recognized April 2 as World Autism Awareness Day since 2008.

People and cities all over the world did things today to recognize autism awareness. The Empire State Building in New York City was one of many buildings to "light it up blue" and representatives from Autism Speaks rang the opening bell at the NYSE. Even President Obama, a supporter of the autism movement, re-declared his dedication to the issue.

Read President Obama's remarks on WAAD

NYTimes looks at the cost of treating (or not treating) autism

From the NYTimes on January 23, 2010:
“Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.
Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.” Read the entire article

While the article talks a lot about the high cost of the various therapies used to treat autism, it also briefly mentions a study by the Harvard School of Public Health that looks at the cost of not providing early intervention for a child with autism. The study estimated that it cost $3.2 million to care for a person with autism throughout their lifetime. The early intervention that many people are fighting for, like ABA, could dramatically reduce or even eliminate this cost by allowing the child to catch up with their peers at an early age and begin learning in a regular environment as soon as the 1st grade. While many people argue about the cost of mandated treatment for these children, I think this is a critical point to make sure is understood. An investment now will be only a fraction of what costs down the road could be. Not to mention it will drastically change the child’s entire life.

Times article explores the 2 sides of autism advocates

Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism

"When President Obama nominated Ari Ne’eman to the National Council on Disability, many families touched by autism took it as a positive sign. Mr. Ne’eman would be the first person with the disorder to serve on the council.

But he has since become the focus of criticism from other advocates who disagree with his view that society ought to concentrate on accepting autistic people, not curing them.

A hold has been placed on Mr. Ne’eman’s nomination, which requires Senate confirmation. Whether the hold is related to the criticism of Mr. Ne’eman and what it might take to lift it is unclear." Continue reading

I do not agree with Mr. Ne'eman's stance on an approach to autism. While it would be a huge step forward for a person with ASD to serve on the council, the harm his opinions could cause to research efforts in the near future are not worth it. I understand Mr. Ne'eman's arguments and agree that there should be more support to help those with high functioning autism to fit into public life, however this is only a small number of those with ASD. His approach would leave behind the children that never develop speaking or other communication skills. It would leave behind those that are firmly stuck in their own world in order for a few to fit more comfortable into ours.

MO Senate passes their own autism bill

For the March 19 Columbia Tribune:

"JEFFERSON CITY (AP) — Missouri senators voted yesterday to require some health insurance plans to cover treatment for autism.

The legislation, approved by a 26-6 vote, would require group insurance policies regulated by the state to provide as much as $55,000 annually for behavioral treatment until age 21.

The “applied behavioral analysis” is an intensive and costly therapy some parents say produces dramatic improvements in their autistic children.

Similar legislation was approved by the House in February and would require coverage of as much as $36,000 annually until age 18. The Senate version of the bill now goes to the House."

The bill referred to is SB 618 sponsored by Senators Rupp and Schmidt. The House and the Senate, each having now passed a bill, will have to decide which one to back. They can then make compromises and changes to hopefully satisfy both sides while not jeopardizing the strength of the bill.

Read a comparable story in March 18th's Missourian.

Interim Committee on Autism Spectrum Disorders

After the wave of support for the autism bill during the 2009 session, an Interim Committee on Autism Spectrum Disorders was created in order to evaluate how the issue effects the citizens of Missouri and what the best solution(s) are to helping those effected by the disorder.

Read the Speaker of House's press release on his decision to create the interim committee.

The committee heard testimony from families, medical specialists and insurance companies on subjects such as the epidemiology of autism, the cost of a mandate, the cost of lack of treatment, ABA, and educational vs. medical treatment. Read the committee's report here.

Applied Behavioral Analysis (ABA)- What is it?

Applied Behavioral Analysis (ABA) is the most thoroughly researched autism treatment and is what most states have chosen to pursue as mandate. It has been approved by the American Academy of Pediatrics, the National Academy of Science Committee, the Association for Science and Autism Treatment, and other respected organizations.

ABA is a hands on approach to develop an enhanced environment that a child with autism can connect with. The goal is to teach prerequisites that will make it possible for the children to learn on their own in the future. Obviously, the sooner this intervention can occur, the sooner a child with autism may be able to learn on their own and potentially join their peers in the traditional classroom without assistance. Of children diagnosed with Autism Spectrum Disorder that receive early intervention, 50% are able to perform in a regular classroom without a para-educator by the 1st grade.

Prevalence Report from the CDC

On December 18, 2009, the CDC released a new report estimating that autism affects 1 in 110 children in the U.S. This is an increase from the previous estimation of 1 in 150. There is also an unequal prevalence between genders with autism affecting 1 in 70 males. These new findings have CDC administrators calling autism an "urgent public health concern".

While it is critical that autism be correctly diagnosed as early as possible (ideally by age 2), the average age of diagnosis is 53 months. Late diagnosis and inadequate treatment are likely reasons that the Harvard School of Public Health estimates a $35 billion price tag on caring for those with autism. The cost is more than monetary, with the disorder drastically changing the quality of life of a child and adult with autism.

Reports like this are helping awareness of the problem to be growing rapidly, efforts have stepped up in research, legislation, and support for these children.

Autism Speaks

Autism Speaks was founded in 2005 by the grandparents of a little girl with autism. The organization "aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle."


Autism Votes is an Autism Speaks initiative focused on federal and state legislative advocacy.

Visit the Autism Votes Missouri page

HHS Director Kathleen Sebelius weighs in in an Op-Ed

From the Yahoo! Newsroom on October 5, 2009:

"Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research."

Read more

I applaud President Obama for his strong approach towards finding answers for autism. The more we learn about the spectrum of disorders, the more we realize just how many people they affect. For families facing this, there are very few answers. We do not even know exactly where autism comes from or what may cause it. I feel this is very important to know, not only to give families a peace of mind, but so we can better understand, treat, and prevent the disorder. Lack of this information has already resulted in irresponsible, rash accusations that have jeopardized public health efforts. We need solid answers so that this does not happen again.

History of the ASD insurance mandate bill

Representative Dwight Scharnhorst filed a very similar bill in the 2009 legislative session. HB 357 was meant to "Require health carriers issuing or renewing a health plan to provide individuals younger than 21 years of age insurance coverage for the diagnosis and treatment of autism spectrum disorder". HB 298 was a very similar bill filed last year by Rep. Jeff Grisamore and discussions about the issue often paired the two bills together. The 2009 session saw the number of bills filed on the topic near double digits. The spark in interest was due to a national movement that is taking place, backed by advocacy organizations such as Autism Speaks.
The crux of the issue was in the fact that Applied Behavioral Analysis (ABA), argued by many in the medical profession to be the best treatment for children with Autism Spectrum Disorder, is specifically denied by most insurance providers. Many families of children with autism are facing the choice between bankruptcy or forgoing treatment for their child. Insurance companies argue that ABA is educational as opposed to medical treatment, even though it is prescribed by physicians. In addition, as with any proposed mandate, they are concerned with the increase in premiums that could occur.

House Passes bill to increase care for autistic children

Legislation originally drafted during last year's session (2009) has already made it one step closer to passage than it did the first time around. On February 18, 2010, the Missouri House passed HBs 1311 & 1341 by an overwhelming vote of 135-18. The bipartisan bills are sponsored by Rep. Dwight Scharnhorst, R-St. Louis and Rep. Jason Grill, D-Kansas City, and would require insurance providers to cover specific treatments that have been identified as the most beneficial to children with autism.