"A tactic used by insurance companies to deny expensive behavioral therapy to autistic children has been deemed illegal by a Los Angeles judge..."
Dear Autism Advocate,
HEALTH CARE REFORM UPDATE: Things are moving VERY quickly in the House now with health care reform and we need you to be ready to act at a moment's notice and give it everything you've got!
Last night, The House Energy and Commerce Committee passed an autism amendment offered by Congressman Mike Doyle (D-PA), Chairman of the Congressional Autism Caucus and member of the House Energy and Commerce Committee, to H.R. 3200, the America's Affordable Health Choices Act of 2009 - the House health care reform bill that is currently undergoing markup in the Energy and Commerce Committee. His amendment would set up national training initiatives on autism.
We anticipate that Congressman Doyle will introduce a very important amendment to the bill tomorrow that will SEEK TO END AUTISM INSURANCE DISCRIMINATION ONCE AND FOR ALL.
When that happens, we will need you to be ready to call following our direction AS FAST AND FURIOUSLY AS POSSIBLE.
We will need to make a loud statement that want this amendment to be attached to the bill.
Our children deserve appropriate healthcare that provides them with access to the medical treatments and therapies that can help them live more productive and fulfilling lives. Keep every one of them in mind as we make our way through this next stage in the process. They are counting on you!
Stay Tuned!
Elizabeth Emken
Vice President, Govenment Relations
Autism Speaks
Washington, DC (July 16, 2009) -- In his opening remarks during the House Energy and Commerce Committee markup of HR 3200, the America's Affordable Health Choices Act of 2009, Congressman Mike Doyle (PA-14), chair of the Congressional Autism Caucus, pledged that any bill that does not put an end to autism insurance discrimination is unacceptable.
"...Autism Speaks is constantly adapting a strategy to give us the best chance of making this [autism insurance reform in health care reform] happen. The strategy may change every hour or it may appear redundant but there is a "method to the madness". The important thing is that as the troops, we stay alert and be ready to act when we get our mission plans..."
"Thursday, July 16 2009
Autism is relentless. In order to effect a change at the national level, we must be relentless too.
The government relations team at Autism Speaks is monitoring the health care reform issue in D.C. very closely. A health care reform bill is going to pass - likely in the next several weeks. The issues we face as families affected by autism must be addressed in this bill.
Autism Speaks is constantly adapting a strategy to give us the best chance of making this happen. The strategy may change every hour or it may appear redundant but there is a "method to the madness". The important thing is that as the troops, we stay alert and be ready to act when we get our mission plans.
Today's mission
Make two phone calls.
Call Speaker of the House Nancy Pelosi and Senate Majority Leader Harry Reid at the phone numbers below:
Speaker Pelosi (202) 225-0100
Majority Leader Reid (202) 224-3542
Just say this:
"Hi, My name is ____________ ___. I am calling from (Your city, your state). I want you to know that health care reform that does not stop autism insurance discrimination is unacceptable. Thank you."
Be patient. Be polite. Keep dialing until you get through to them. Then do it again. If the voice mail box is full, call back and request that the receptionist take a message. Please send this message on to 15 other people.
Thanks and stay tuned!Michael Wasmer, DVM
Founder, The Kansas Coalition for Autism Legislation (KCAL)
Autism Speaks Kansas Chapter Advocacy Chairwww.autismvotes.org
From Autismvotes"The health reform ship has sailed and autism insurance reform is
currently NOT ON IT.
U.S. H.R. 3200 is currently IN MARK UP and our hope of achieving autism insurance reform for children with autism as part of the larger health reform initiative WILL REQUIRE AN AMENDMENT to the Resolution.
NOW MORE THAN EVER IS THE TIME TO,CALL U.S. House Speaker Nancy Pelosi's Office at
202-225-0100
and tell her office that health insurance reform that does not stop autism insurance discrimination is unacceptable.
You must get 20 people in your life MINIMUM to start calling NOW, and you must keep the PRESSURE UP and keep the PRESSURE ON if you want to see this for your children.
All you have to say is this simple message:
"Hi. My name is ________. I believe that health insurance that does not stop autism insurance discrimination is unacceptable and I am counting on Speaker Pelosi to be sure that children with autism have appropriate coverage for the treatments and therapies they deserve access to for their medical condition. Thank you."
------------ --------- -------
"...Guaranteed insurance would make a significant difference to people like Valerie Goodness, a firefighter in Corvallis, Oregon, who was forced to leave her job because of her 13-year-old son's autism. When her employer changed insurance companies, the new one refused to cover his "pre-existing condition" -- a common dodge regarded as one of the system's great iniquities [sic].From
Now, if she earns more than $1,000 (€717) a month, she will lose the insurance provided by Medicaid, a state programme for the poor.
"And there is no way I could earn a job that would pay enough for private nursing at $20 to $30 an hour," said Mrs. Goodness.
"I feel like I am forced into poverty just so I can get insurance..."
“Neighbors" depicts the consequences of insurance company discrimination against individuals with autism and calls on the American public to urge Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to end autism insurance discrimination in the upcoming health care reform legislation."Hi, My name is _______________. I am calling from (Your city, your state). I want you to know that health care reform that does not stop autism insurance discrimination is unacceptable. People with autism deserve coverage for the treatments and therapies that will help their medical condition. Thank you."Be patient. Be polite. Keep dialing until you get through to them. Then do it again.
IMPORTANT: Make sure to add some personal information on why this is such an important issue for you and your family. Be sure to let them know that all children with autism from coast to coast deserve appropriate insurance coverage.3. IMPORTANT: FORWARD THIS ACTION ALERT ACROSS THE COUNTRY!
Put this action alert on your Facebook page, Twitter it, forward to Yahoo groups and local support groups. Forward this email to at least 20 people that do NOT have a child with autism - neighbors, extended family, coworkers, old college and high school friends - and ask them to make these two calls every day for your child
Autism Speaks, the nation's largest autism science and advocacy organization, has launched a new national television advertising campaign highlighting private insurers blatant discrimination against children with autism and calling on the U.S. Congress to put an end to it as part of the broader health care reform effort. The thirty-second ad, Neighbors, will air nationally on CNN, CNBC, and MSNBC.
Parents of autistic children gathered this morning at Consumer Watchdog's Los Angeles headquarters to announce a lawsuit against Governor Schwarzenegger's administration for allowing health insurers to refuse to pay for Applied BehaviorFULL STORY AT THE HUFFINGTON POSTal[sic] Analysis ("ABA"), an essential treatment for autism, in plain violation of the California Mental Health Parity Act.
Independent panels of doctors paid by California had been ruling in every autistic child's case that the ABA treatment was medically necessary [my emphasis], so insurers changed the rules of the game with the help of the Schwarzenegger administration. The insurers simply claimed the treatment wasn't covered, because it was educational in nature, and therefore independent panels of medical reviewers no longer had the power to overrule the insurance bureaucrats. (...)
Senator Ron Wyden
Senator Jeff Merkley
Representative David Wu [District 1-Clatsop, Columbia, Washington, Yamhill and part of Multnomah.]
Representative Greg Walden [District 2-Baker, Crook, Deschutes, Gilliam, Grant, Harney, Hood River, Jackson, Jefferson, Grants Pass area of Josephine, Klamath, Lake, Malheur, Morrow, Sherman, Umatilla, Union, Wallowa, Wasco and Wheeler.]
Representative Earl Blumenauer [District 3-Most of Multnomah and northern part of Clackamas]
Representative Peter DeFazio [District 4-Coos, Curry, Douglas, Lane, Linn, most of Benton and Josephine.]
Representative Kurt Schrader [District 5-All of Lincoln, Marion, Polk and Tillamook, parts of northern Benton, most of Clackamas and parts of southwestern Multnomah]"Hi. My name is ________________. I am your constituent and live in (City, STATE). I am calling to be sure that you received a copy of the advertisement that I faxed to your office regarding the Autism Treatment Acceleration Act. I would like Senator/Congressman (Name) to cosponsor this important piece of legislation. The bill number is S. 819 (if you are calling a Senator) or H.R. 2413 (if you are calling a House Representative). Thank you so much. I will keep checking back to see if he/she has signed on because this is very important to me."4. Forward this to as many people as you can, and ask them to do the same thing!
"No insurer should ever take this approach to needed care for children. Applied Behavioral Analysis therapy is supported by science and is not 'experimental. ' Delays by insurers in authorizing this treatment, when it is covered by insurance policies, should not be tolerated. Research shows that children with autism spectrum disorder need this therapy early on in life and delaying treatment can irreversibly prevent them from achieving their full potential."Mr. Mantese emphasized that the settlement includes even families who never submitted a claim to Blue Cross, but who obtained this care for their children and were covered by a Blue Cross policy. Mr. Conway believes that this is the first such settlement addressing Applied Behavioral Analysis (ABA) in the country.
Applied behavioral analysis (ABA) is currently the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders and is the standard of care recommended by the American Academy of Pediatrics, National Academy of Sciences Committee and the Association for Science in Autism Treatment, among others.Blue Cross' own documents further acknowledged that:
The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions.Mr. Mantese stated,
"After we compelled Blue Cross through motion practice to produce all materials supporting its position that this care was allegedly experimental, we received numerous file documents which actually established that ABA therapy works and is highly effective in increasing the functioning of these children."Mr. Conway emphasized, "We are pleased that we were able to obtain a result which will require Blue Cross to pay for this important care and will alleviate some of the financial strain imposed on over a hundred families by having to pay for this care when it was covered under their insurance policies."
"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].
"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:---------------------------------------------------------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.---------------------------------------------------------
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
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.
"...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,
"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)?]
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.
"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
Friday, June 19th, 2009, from 9:00a – 12:00p at
The Jean Baton Swindells Resource Center for Children and Families
830 NE 47th 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 19th, 2009, from
9:00a – 12:00p at
The Jean Baton Swindells Resource Center for Children and Families
830 NE 47th Avenue, Portland, 97213
