NEWSFLASH: Story in the Huffington Post on The federal AutismTreatment Acceleration Acts: S. 819 & H.R. 2413

[Also see previous post on U.S. Resolutions, S. 819 & H.R. 2413. ]

The Autism Treatment Acceleration Act and the Autism Sandbox
Shelley Hendrix Reynolds
Posted: May 31, 2009 06:40 PM
Huffington Post

Please read the full article, but I want to highlight some cogent clauses made by Ms. Reynolds,

"...Despite dutifully paying premiums to insure against the unthinkable that their child could be diagnosed with a disease or disorder, most parents of children with autism cannot get appropriate coverage to treat their child's medical conditions. Not because these parents didn't act responsibly and do their part but because insurance did not do their part...

Why should you care about their plight as an average tax paying citizen without a child with autism? It directly affects your own checking account...

No one would dream of treating a child with a life threatening illness at any less than what the doctor recommends. No one would ever expect that the public education system to be responsible for curing that disease and yet, insurance companies do just that...shirk their accountability to the education system instead of providing children with appropriate coverage when they are toddlers making them more likely to be mainstreamed into a regular education setting. Providing access to these treatments saves tax payer's dollars, creates new job markets and most importantly, gives these children an opportunity to become tax payers themselves one day with independent lives via a fiscally responsible solution to a growing societal issue..."

See the full article at the Huffington Post

and for more information and TO ACT on the Autism Treatment Acceleration Act(s), see Autismvotes.

Newsstory & Comment: "Advocates push for autism services"

[Blog author note--HB 3000 is mentioned towards the end of this newsstory from the April 30, 2009 Statesman Journal.

Advocates push for autism services
Oregon lacks system to identify, treat kids, one lawmaker says
By Tracy Loew • Statesman Journal

April 30, 2009

http://www.statesmanjournal.com/article/20090430/LEGISLATURE/904300337/1042/STATE

[Blog author note and comment: The news story from the S-J illustrates as much as anything why HB 3000 must pass so that families of children with autism can access necessary therapy by health insurance coverage of the medical condition of autism-- if parents are "fighting", as stated in the news story, for FIVE hours a week of school-supplied therapy (The recommended amount is at least 25 hours of intensive programming per week year-round).

As a point of reference, there are parents in the state whose children are almost ready for ADULT SERVICES who were advocating for some of the stated changes when their children were preschoolers or early elementary age, and others who worked on the previous Caring for Oregon's Students with Autism Task Force created under SB 765 (1999), Oregon CHAPTER 1046, and studied the same issues and made recommendations in a produced Report almost TEN YEARS AGO .

Concrete action a little quicker than that is not a matter of preference or desiring change to "turn on a dime"--It is an overdue necessity.


The blog author does not want to face a dismal prospect of today's preschoolers with autism ten years into the future still waiting for change and ability to access competently delivered evidenced therapies at the appropriate intensity as recommended by the US Surgeon General in 1999, the National Academies of Science in 2001, and the American Academy of Pediatrics in 2007]

Cover story KATU news, Portland: "House bill to help cover costs of Autism "

Broadcast Wed. May 5, 2009 during the 4PM news broadcast
at KATU, Channel 2, Portland, Oregon

House bill to help cover costs of Autism

"Oregon has one of the highest rates of children with Autism in the US, yet the state has not been able to pass legislation to help parents with the burden of treating their children. A bill stuck in the house [HB 3000 in the House Rules Committee] right now would force insurance companies to help, and dozens of families are counting on that bill to help ease the financial burden."

http://www.katu.com/news/medicalalert/44499612.html

Thank you to Lisa and John McHenry for sharing their story and
thank you to KATU for sharing it with the public!

NEWSFLASH: Wed. 5/6, 4:00PM-- HB 3000 on Portland Channel 2/KATU

We've been given the heads-up that KATU, Portland Channel 2, will be covering HB 3000 and autism on their news broadcast at today, Wednesday, May 6 at 4:00PM.

KATU News also has a live online streaming option.

(It's not known yet whether this will be rebroadcast in the later newscasts at 5:00 PM, 6:00PM or 11:00PM, but we'll post that info if it becomes available.)

We'll include a link to what gets posted at the KATU website as it becomes available.

Don't forget to tune in!

Letter to the editor: "Cover Autism Therapy"(

Letter to the Editor in The Oregonian from a Portland mother.
(Good job Danni McLaughlin!)

Note: KEEP these letters and include them with YOUR letters to legislators to show that this is a matter of public interest and that the issue is in the public venue.
As one minor correction, at this time TEN ELEVEN states have passed mandates covering behavioral therapy for minors with autism: IN, SC, TX, AZ, LA, FL, IL, PA, NM and most recently--MT and CO. (Blog author note: Colorado passed their mandate May 5!)

NV looks as if it is poised to pass their mandate bill. These states recognize that their children--their citizens--need this support and access to behavioral treatment.
Oregon should do no less.

Oregonian - Letters to the editor: Autism Funding May 2, 2009

Cover autism therapy

How nice for State Rep. Mitch Greenlick that he only has to ponder whether or not behavior therapy would help all children with autism, all the time, with all its symptoms ("A struggle to defeat autism and its costs," April 29).

Is there a single medical protocol with a 100 percent success rate for all afflicted?

I have a child with autism, so I can tell you that behavioral therapy works wonders. It is a remarkable tool that changes kids' and families' lives. It isn't invasive, it requires no expensive equipment and the skills can be taught and used at home and in school.

Can you imagine being told that your child's needed speech, occupational, physical and behavioral therapies are not covered by insurance? Note that these same policies cover addicts, the obese and smokers.

Oregon's autism rate is among the highest in the nation. Funding treatment that helps children with autism become productive, able, self-directed citizens is a vital investment. Please ask your legislators to add Oregon to the list of nine other states that have already passed this critical insurance reform.

DANNI McLAUGHLIN
Southwest Portland

From the Oregonian on ABA and HB 3000

Families of the autistic struggle with care and costs
by Bryan Denson, The Oregonian Tuesday April 28, 2009, 7:22 PM
Photos by Benjamin Brink/The Oregonian

Annotated excerpts with links to additional info; comments in red.

"Joe Joe McHenry, 4, uses toys to learn pronouns during a recent morning session with autism behavioral therapist Emily Hoyt. Joe Joe's mom, Lisa McHenry, says the intensive therapy has been vital to his development.
...But McHenry was astonished to learn that her health insurance didn't cover a penny of the expensive treatment...
Autism is also on center stage in Salem, and for good reason. U.S. prevalence of the brain disorder is about 1 in 150, according to the Centers for Disease Control and Prevention [1], but some estimates based on school data put Oregon's rate as high as 1 in 87 [2]. Policymakers warn of an approaching "autism tsunami" that will wash over the state's already troubled educational systems...
autism advocates and insurers are squared off over House Bill 3000. The proposed law would require insurance companies to pay up to $36,000 a year for Oregonians younger than 21 enrolled in the kind of intensive behavioral therapy Joe Joe McHenry undergoes....
[Blog Author note: The key phrase being "up to". While the most challenged children may require the entire amount specified under the cap, many children will probably require less and the cost should decrease with improvement through treatment, since the goal is to intervene early, and enable as many children to enter elementary school with no, or minimal aids. Some students will require more support and intervention. Cost analyses done by the actuarial firm of Oliver Wyman Actuarial Accounting, Inc., cites figures of a 0.1% increase in per policy cost in Texas since the passage of their mandate in 2007, with estimated per-policy costs for other states well under 1% (range 0.36- 0.75%)[3][4][5][6]. This corroborates with data from the states of Indiana and Minnesota which have had this coverage for several years [7]. In South Carolina, since passage of their autism insurance reform mandate, some insurers who were not required to provide the coverage under the law are choosing to do so voluntarily [8]. Canada's fiscal study of current cost vs. future savings assessed that current investment in intensive behavioral therapy will represent a future fiscal savings. [9] ]

Insurance companies generally pay for drugs that improve symptoms of autism. But they have been slow to embrace the concept of paying for the kind of behavioral therapy Joe Joe undergoes, describing it as not medically necessary [10] or experimental in nature [11].

This bewilders Laura Schreibman, Ph.D., a veteran autism researcher at the University of California at San Diego [12]...Though scientists are far from agreeing on the origins of autism, Schreibman believes it is a neurodevelopmental disorder present from birth that appears to be genetic. It is clearly a medical issue, she said...

"There's no other form of treatment for children with autism that's been demonstrated -- I mean empirically demonstrated [13] -- to be effective with these kids," Schreibman said. "I just don't know how much research and how much literature has to amass [14] before insurance companies are going to say, 'Yeah, OK.'"

FULL ARTICLE

-------------------------------

1. Prevalence of the Autism Spectrum Disorders in Multiple Areas of the United States, Surveillance Years 2000 and 2002. Centers for Disease Control and Prevention, Department of Health and Human Services. Date March 11, 2009 Content source: National Center on Birth Defects and Developmental Disabilities. Accessed April 28, 2009.
   http://www.cdc.gov/ncbddd/dd/addmprevalence.htm
   
   
2. "Services Aren't Keeping Up With Autism". Oregon Public Broadcasting (OPB) News. August 20, 2008.
   Accessed April 28, 2009.
   http://news.opb.org/article/2871-services-arent-keeping-autism/
   
   
3. A ctuarial Cost Estimate: Connecticut Senate Bill 301 An Act Concerning Health Insurance Coverage for Autism Spectrum Disorders
   

   Oliver Wyman Actuarial Consulting, Inc., Marc lambright, FSA, MAAA
   From Autism Votes
   
   
4. Actuarial Cost Estimate: Georgia Senate Bill 161 An Act Relating to Insurance Coverage for Autism Oliver Wyman Actuarial Consulting, Inc., Marc Lambright, FSA, MAAA, March 2, 2009
   From Autism Votes
   
   
5. Actuarial Cost Estimate: Kansas Senate Bill 12 An Act Relating to Insurance Coverage for Autism Oliver Wyman Actuarial Consulting, Inc., Marc Lambright, FSA, MAAA, March 2, 2009
   Addendum
   From Autism Votes
   
   
6. Actuarial Cost Estimate: Missouri Senate Bill 167 – An Act Relating to Coverage for the Diagnosis and Treatment of Autism Spectrum DisordersOliver Wyman Actuarial Consulting, Inc., Marc lambright, FSA, MAAA.
   From Autism Votes
7. Presentation by Lorri Unumb, Esq., Senior Policy Analyst, Autism Speaks, in public testimony to the Oregon House Health Care Committee, April 8, 2009.
   

8. Lorri Unumb, Esq., Senior Policy Analyst, Autism Speaks. (Personal communication)
   
   
9. Motiwala, S. S., Gupta, S., & Lilly, M. B. (2006). The cost-effectiveness of expanding intensive behavioural intervention to all autistic children in Ontario [Canada]. Healthcare Policy, 1(2), 135-151.
   
   
10. One definition: MEDICALLY NECESSARY – means any care, treatment, intervention, service or item which will or is reasonably expected to do any of the following: (i) prevent the onset of an illness, condition, injury, disease or disability; (ii) reduce or ameliorate the physical, mental or developmental effects of an illness, condition, injury, disease or disability; or (iii) assist to achieve or maintain maximum functional activity in performing daily activities."
    
    
11. Petitioner File No. 85641-001.STATE OF MICHIGAN DEPARTMENT OF LABOR & ECONOMIC GROWTH OFFICE OF FINANCIAL AND INSURANCE SERVICES Before the Commissioner of Financial and Insurance Services. Issued and entered 11/27/2007.
    In the matter of XXXXX v Blue Cross Blue Shield of Michigan, Respondent
    http://www.michigan.gov/documents/dleg/85641_BCBSM_11-27-07.pdf_222301_7.pdf
    Accessed April 28, 2009.
    Determined that ABA was an appropriate covered benefit, not educational and not experimental.
    
    
12. UCSD Autism Research Program, University of California, San Diego
    Accessed April 28, 2009.
    
    
13. Applied Behavior Analysis and Neurodevelopmental Disorders: Overview and Summary of Scientific Support. Louis P. Hagopian & Eric W. Boelter. The Kennedy Krieger Institute and Johns Hopkins University School of Medicine. Accessed April 28, 2009.
    http://www.kennedykrieger.org/kki_misc.jsp?pid=4761
    
    
14. Summaries of Research Evidence EIBI Comprehensive Interventions. p. 9-11, 13-16, from The Science and Art of Behavioural Autism Interventions: Designing Programs with Evidence and Compassion. Shahla Alai-Rosales, Ph.D., BCBA. February, 2009.
    ,