ACTION: How to take action on the federal Autism Treatment Acceleration Acts of 2009 (ATAA)

The below request has been sent out by Autism Votes, and never was a truer word said than,

"Health insurance reform is the buzz word in Washington, DC right now. We need to generate thousands of calls to be sure that our children's needs for access to the treatments and therapies that will help them are being heard!"

We have an opportunity, but we must keep OUR voices and concerns on the front burner and get these bills passed this Congressional session---so it is extremely important to keep in touch with our members of Congress and get them on-board with the ATAAs [S. 819, H.R. 2413].

Previous posts on the bills

• Friday, June 12, 2009
  A Shift in Gears from HB3000 to the Federal Autism Treatment Acceleration Acts

• Monday, June 1, 2009
  NEWSFLASH: Story in the Huffington Post on The federal Autism Treatment Acceleration Acts: S. 819 & H.R. 2413

Autism Votes CALL FOR ACTION

"We are ramping up our grassroots efforts for the Autism Treatment Acceleration Act and need your immediate attention and support on this issue!

You are receiving this email because you live in a state that worked hard this year to pass autism insurance reform at a state level. Your state legislative efforts have come to an end and you made significant gains this year! Congratulations on all your hard work.

Through this piece of federal legislation, we have the opportunity to end autism insurance discrimination once and for all from coast to coast!

We need your help to do that by calling the following people each day this week!

Health insurance reform is the buzz word in Washington, DC right now. We need to generate thousands of calls to be sure that our children's needs for access to the treatments and therapies that will help them are being heard!

Here's how YOU can help:

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1. CALL YOUR SENATORS IN CONGRESS AND ASK THEM TO CO-SPONSOR THE ATAA (Senate Bill 819)! You can find out who your senators are HERE - be sure to check here to see if they have already decided to co-sponsor the ATAA prior to calling by checking the list of co-sponsors. Your Senators have received a Dear Colleague letter from the bill's original sponsors which you can read here.

2. CALL YOUR CONGRESSMAN AND ASK THEM TO CO-SPONSOR THE ATAA (H.R. 2413)! You can find out who your Congressman is HERE. Be sure to check here to see if they have already agreed to co-sponsor the legislation before you call them.

Not sure of what to say? It's easy! Just say this:

"Hi! My name is ____________. I am a constituent of yours and live in (City,State). I am calling to ask you to cosponsor the Autism Treatment Acceleration Act (give the appropriate bill number - Senate is S. 819 and House is H.R. 2413). We worked very hard to pass similar legislation as this in our state but were not able to do so this session. We need your help to end autism insurance discrimination. Thank you so much."

> Once you have completed your call, you can send emails to the Members of Congress HERE!

3. FORWARD THIS TO 20 OTHER PEOPLE THAT CAN HELP YOU! If you have ever heard someone say, "I wish there was something we could do to help (insert your child's name here)!", now they can. It is a cost effective way to truly help your child and the other children with autism not only in your state, but nationwide.

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We can do this!

For more information on the Autism Treatment Acceleration Act, please visit www.autismvotes.org/ataa.

Happy dialing!

Shelley Hendrix
Director of State Advocacy Relations
Autism Speaks

A Shift in Gears from HB3000 to the Federal Autism Treatment Acceleration Acts

First of all, I want to thank every last parent, family and supporter who threw their all into working on behalf of the passage of HB 3000, Oregon's Autism Insurance Reform Bill, by their articles, letters, testimony, talking to legislators and phone calls. Most bills do not make it as far as HB3000 did, and we gave it a good run and raised awareness of our kids and our issues!

Monday, June 8 was the last day for a hearing to be scheduled for HB 3000 in the Oregon House Rules Committee if it was going to continue in the legislative process. That hearing was not scheduled.

At this point the attention of this blog, and I hope your attention as a supporter of insurance fairness for our kids will shift to the Autism Treatment Acceleration Acts of 2009 in the U.S. Congress, which no doubt many already know about,

S. 819 :A bill to provide for enhanced treatment, support, services, and research for individuals with autism spectrum disorders and their families.

&

H.R. 2413,
To provide for enhanced treatment, support, services, and research for individuals with autism spectrum disorders and their families.

There are many fine opportunities that will be created for children, adults and families living with autism if these measures can pass in this 111th Congress, and one of them is the insurance fairness that we have been seeking on a state-by-state basis.

There'll be more to come in future posts, but for now I would like to point you to

• a previous post on these Federal bills, about why it's time for insurance equity for children with autism,
  
  
• the sidebar of this blog which has quicklinks to the texts and status of
  S. 819, H.R. 2413,
  as well as the TRICARE autism insurance bills specific to military families,
  H.R. 1600 and S. 1169 , and
  
  
• direct you to the information at Autism Votes about the Autism Treatment Acceleration Acts., and
  
  
• ask you to please contact your Congressional Senators and Representatives and
  urge them to co-sponsor and support S. 819 and H.R. 2413.
  

Again, thank you for the good fight on Oregon HB3000, your continued work on S. 819 and H.R. 2413, and for your continued support of improving things for our children and our families.

We can do it and we can get there.

SIDEBAR: Video- "Legislative Advocacy for Individuals with [Developmental] Disabilities"

An interesting and informative video from UC MIND, which has some specificity to California in reference to particular advocacy groups and structural differences in that state. That said, the issues discussed are not particular to any one state and there are some good ideas on what makes for successful grassroots advocacy. The message on advocacy "how-tos" picks up after 40 minutes.

Legislative Advocacy for Individuals with [Developmental] Disabilities
UC MIND Institute June 2008, 1:16:25

COMMENT: Virginia does "poor job" providing autism services, and what that has to do with Oregon.

A couple of hours ago, a news alert from the Richmond Times-Dispatch (VA) came across my desk and definitely got my attention. Why is Virginia of so much interest? During the Oregon House Health Care Committee public hearing on HB 3000, this point was brought up by a consultant to one of the insurance companies,

"...but we will point out that in places like VA, where one of our leading developmental pediatricians comes from, the schools do much more on this [autism], and they feel that they have not even begun to reach the level of what their side of the bargain should do in this...".

And my reaction at the time was,

[Blog author note: Without the particular significance or special insight involved, the description of what was said by the colleague, "leading", or not is what is known as "anecdotal" or "testimonial". It may well be that VA schools are better, or not. If such was sufficient as evidence, the matter at hand, then we could dispense with experimental design altogether. The point is moot and irrelevant of the merits of this legislation. And if retaining it to the question of schools, if the anecdote that VA schools are doing much more but only scratching the surface, what does that say about the level of therapy in any venue available in Oregon?..."

So the headline from Virginia that caught my attention was,

VA. does poor job providing autism services, study says
by Tyler Whitley
Richmond Times-Dispatch

Published: June 8, 2009

"The state [VA] does a poor job of providing services to people with autism, the legislature's watchdog group said today...Parents seeking benefits for autistic children, and insurance lobbyists gearing up to oppose the possibility of mandated insurance benefits that might include autism treatments, filled a room at the General Assembly Building to hear the report...JLARC [Joint Legislative Audit and Review Commission] began the study last year. Its first report recommended that health insurance require that autism treatment be covered. Under heavy pressure from insurance interests and small-business owners, the General Assembly rejected the proposal..."

[Blog author: So that was what was really going on with insurance proposals in Virginia, and what does the JLARC report say (keeping in mind that the conditions in Virginia were presented as superior to that in Oregon)?]

Report of the Joint Legislative Audit and Review Commission To the Governor and The General Assembly of Virginia
Commission Draft: Assessment of Services for Individuals with Autism Spectrum Disorders
June 8, 2009, 256pp.

CHAPTER 2: ASDS CAN OFTEN BE EFFECTIVELY TREATED, RESULTING IN COST SAVING
"...Several treatment approaches have been scientifically shown to meaningfully improve the outcomes of individuals with ASDs, including the commonly referenced applied behavioral analysis (ABA) method. In particular, most young children with ASDs who participate in intensive early intervention programs based on ABA principles experience improvements, with almost half achieving normal levels of functioning and another 40 percent realizing moderate gains. According to cost-benefit analyses, providing intensive treatment to young children can significantly reduce public costs by decreasing the need for special education and other forms of public assistance, with savings likely to accrue over the lifetime of individuals with ASDs. While many approaches have been categorized as effective for treating ASDs, research indicates that packaged programs with a pre-determined curriculum, such as ABA, appear to have more promising results than programs that rely on a more informal mix of interventions..."

Chapter 2: Autism Spectrum Disorders Can Be Effectively Treated, Producing Cost Savings
p.11, "... The largest body of research exists for interventions based on applied behavior analysis (ABA). ABA-based interventions are supported by approximately 30 years of research pointing to their effectiveness and have been accepted by much of the medical community as effective techniques for treating ASDs, along with several other interventions. Further, research indicates that treatment is beneficial for many and could result in long-term savings of public resources over these individuals’ lifetimes...

See Figure 2: Interventions Have Been Categorized Based on Category: Scientifically Based Practices

"Significant and convincing empirical efficacy and support:
Applied Behavior Analysis, Discrete Trial Training. Pivotal Response Training, LEAP"

p.16, "...By applying the methodology used in the Pennsylvania and Texas studies to Virginia-related data, JLARC staff estimate that the Commonwealth could save approximately $137,400 in special education costs per student with an ASD if EIBI was consistently provided. In fact, the analysis indicates that Virginia could realize savings as long as at least 42 percent of students with ASDs who received EIBI make moderate improvements (require less intensive services and fewer supports), which is a substantially more conservative outcome than the outcomes reported in the research literature..."

p.33 -34, Table 8: Common Arguments Concerning Health Insurance Coverage for ASD-Related Therapies

[yin:] Many treatments are experimental, investigational, or unproven for ASDs. No treatment is known to be effective for all individuals.
[yang] Many in the medical community (including the U.S. Surgeon General, the Institute of Medicine’s National Research Council, and the American Academy of Pediatrics (AAP)), recognize certain therapies as research-based, including speech, occupational, physical, and behavioral therapies such as those based on the principles of applied behavioral analysis (ABA). Medical treatments are generally not effective for everyone who suffers from a given medical condition

Chapter 7: Improving the Delivery of Services to School-Age Virginians With ASDs
p.114, Specific “Packaged” Interventions Appear More Promising, but Many Schools Use the Mixed-Methods Approach

"...Because individualized educational programming often necessitates the use of multiple instructional strategies, Virginia schools commonly rely on a variety of approaches to serve students with ASDs. However, only a minority of schools report using comprehensive packages such as applied behavior analysis (ABA). Further, fewer than ten percent of schools use these packages as their preferred intervention, relying instead on a “mixed methods” approach to meeting the needs of students with ASDs, despite evidence that packages tend to yield better results (Chapter 2). The literature does note that a mixed methods approach could be just as effective as a package, in theory, but that it requires a degree of expertise, planning, and coordination that is often not present in Virginia schools..."

Read the report.

NEWS: U.S. Senate Bill 1169 introduced to expand autism treatment coverage under TRICARE

"On June 3, 2009 S. 1169 was introduced by Senator Kirsten E. Gillibrand (NY), as the Senate-side companion resolution to the previously introduced H.R. 1600. Both bills would "amend title 10, United States Code, to provide for the treatment of autism under TRICARE..."

Full article:
Monday, June 8, 2009 Practitioner Issues in Behavior Analysis SIG Blog

NEWS: Federal S. 1169 joins H.R. 1600 to provide for the treatment of autism under TRICARE

SIDEBAR: "CLEARING THE AIR ABOUT ABA… And having fun as we do it!"

Friday, June 19^th, 2009, from 9:00a – 12:00p at

The Jean Baton Swindells Resource Center for Children and Families

830 NE 47^th Avenue, Portland, 97213

Downloadable flyer

CLEARING THE AIR ABOUT

ABA…

And having fun as we do it!

Presenters: Sarah L. Schaefer, LPC, BCBA, www.advbehavioralconcepts.com

Mark Vogl, BS, Program Coordinator, CCI Enterprises

plus a special parent testimonial

Parents, professionals, and all “Anti-ABAers” are invited to join us while we present the truth and dispel the myths about

Applied Behavior Analysis

Families and professionals are often faced with various approaches to teach children with special needs. While there is a vast array of approaches, families encounter confusion and doubt about which approach will effectively teach children a new skill or reduce behaviors that interfere with learning. This presentation will present the science of applied behavior analysis while dispelling common misperceptions. It will clarify the basic principles of behavior analysis and how they may be applied to people with a wide variety of needs both in an intensive teaching and natural learning environment.

Friday, June 19^th, 2009, from
9:00a – 12:00p at

The Jean Baton Swindells Resource Center for Children and Families

830 NE 47^th Avenue, Portland, 97213

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.