Tuesday, April 28, 2009

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. 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

  4. 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

  5. Presentation by Lorri Unumb, Esq., Senior Policy Analyst, Autism Speaks, in public testimony to the Oregon House Health Care Committee, April 8, 2009.

  6. Lorri Unumb, Esq., Senior Policy Analyst, Autism Speaks. (Personal communication)

  7. 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.

  8. 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."

  9. 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.

  10. UCSD Autism Research Program, University of California, San Diego
    Accessed April 28, 2009.

  11. 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

  12. 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.
    ,

Monday, April 27, 2009

HB 3000 Goes to the House Rules Committee

At the House Health Care Committee meeting today 4/27/09, HB 3000 was referred on consensus to the House Rules Committee without recommendation. The alternative to this referral was that HB 3000 would have died in Committee without action having been taken.

This decision can be heard on the audio transcript (clip 1) at about 14:00-18:46.

Representative Kennemer asked whether this was to Rules to be "ruled" on, or to the "Rules Cemetery". Representative Bruun added the comment that HB 3000 had value and was viable by amendment to use of "current best practices" rather than specific treatment modality in order to give the bill flexibility and to give petitioners and advocates the support required.

The reply of Chairman Greenlick was that the matter would now be in the Rules Committee's hands.

Composition of the Rules Committee,

Rep. Arnie Roblan, Chair, (D-9-Coos Bay) 503-986-1409, rep.arnieroblan@state.or.us
Rep. Vicki Berger, Vice-Ch. (R-20-Salem) 503-986-1420, rep.vickiberger@state.or.us
Rep. Chris Edwards, Vice-Ch. (D-14-Eugene) 503-986-1414, rep.chrisedwards@state.or.us
Rep. Bill Garrard (R-56-Klamath Falls) 503-986-1456, rep.billgarrard@state.or.us
Rep. Sara Gelser (D-16-Corvallis & Philomath) 503-986-1416, rep.saragelser@state.or.us
Rep. Bob Jenson (R-58-Pendleton) 503-986-1458, rep.bobjenson@state.or.us
Rep. Mary Nolan (D-36-Portland) 503-986-1436, rep.marynolan@state.or.us
Rep. Tobias Read (D-27-Beaverton) 503-986-1427, rep.tobiasread@state.or.us


Staffing: Jerry Watson, Mike Reiley
Office: 453, Phone: 503-986-1532


Link to the Rules Committee's Agenda page

A Busy Work Session and a Crucial Deadline

HB 3000, the Autism Insurance Reform Bill,
is scheduled for a work session today, April 27, 2009,
at 3PM, Hearing Room D, State Capitol.
TODAY
See the note below about legislative calendars!

  • The Agenda for the 4/27/09 meeting of the House Health Care Committee
    [It looks like there are 5 bills scheduled for public hearing, and 15 bills carried over from the 4/24 meeting for work session.]

An important note about legislative calendars

According to the Oregon Academy of Family Physicians 2009 Legislative Report,
"April 28 deadline for moving bills out of first committee
Friday, April 17 was the deadline for scheduling work sessions for bills in the chamber of origin. The next deadline is April 28. By then, committees must take action on those bills. [Blog author note: HB 3000 was scheduled for the work schedule--but action must be taken on it by the House Health Care Committee by Tuesday, April 28, 2009 for it to remain an "active" bill without special measures to revive it.]
These internal deadlines help winnow the field of bills under consideration. Hundreds of bills will drop off the radar screen for lack of action, either on the 17th or by the 28th.
But it’s important to remember that no bill is really dead until the session gavels to an end. While it is unlikely that dead bills will be revived, it’s not impossible.
Policy committees will spend May considering bills that have passed the other chamber."

[This has some relevance to why this particular Committee Meeting has so many bills to address. There was a comment by Representative/Chairman Greenlick in the 4/24/09 meeting that HB 3000 is intended to be sent to the Rules Committee. If done so today, this would mean that action was taken in the first committee, and HB 3000 will still be active and in play!]

Sunday, April 26, 2009

ABA and Neurodevelopmental Disorders - Scientific Support


Authors: Louis P. Hagopian & Eric W. Boelter
The Kennedy Krieger Institute and Johns Hopkins University School of Medicine


"Applied Behavior Analysis Defined.
Behavior analysis is the systematic study of variables that influence behavior (Sulzer-Azaroff & Mayer, 1991). Applied behavior analysis (ABA) is a discipline concerned with the application of behavioral science in real-world settings such as clinics or schools with the aim of addressing socially important issues such as behavior problems and learning (Baer, Wolf, & Risley, 1968). Procedures derived from the discipline of ABA have been implemented to assess and treat a broad range of behaviors with individuals diagnosed with intellectual and developmental disabilities. However, despite more than 40 years of applied behavior analytic research there continues to be misperceptions about ABA. One misperception is that ABA is a standardized treatment program that is used for a specific type of problem and with specific types of individuals. For example, some incorrectly believe that ABA is a type of therapy or a specific procedure for teaching children with autism, and that it is synonymous with “Lovaas Therapy” or “discrete trial training.” Although discrete trial training represents one type of ABA-based approach, the field of ABA is much broader and includes a range of tactics, methods, and procedures that have been shown to be effective for many different types of problems. Features common to all ABA-based approaches are the objective measurement of behavior, precise control of the environment, and use of procedures based on scientifically established principles of behavior. Any clinical procedure or research investigation adhering to these basic criteria can be considered to be an ABA-based procedure. This includes “functional behavioral assessment,” and approaches such as “Positive Behavioral Support,” and forms of “Behavior Therapy” that rely on direct observation of behavior and analysis of behavior-environment relations..."
FULL ARTICLE
  • Applied Behavior Analysis Defined
  • Scientific Support for Applied Behavior Analysis
  • Application of ABA-based procedures across settings and populations
  • Scientific, Professional, and Government Organizations’ Position on Applied Behavior Analysis.
  • Empirically Supported Treatments for Problems Associated with Mental Retardation, Autism and Related Disorders.
  • Legislative Rulings in Support of Funding and Access to ABA-Based Services.
  • Link to list of references

Saturday, April 25, 2009

Reminder: April 29 is Autism Advocacy Day at the Capitol!

Information on Autism Advocacy Day, April 29, 2009, Room 350, State Capitol, Salem, Oregon

With HB 3000 the Autism Insurance Reform Bill, the formation of the Governor's Commission on Autism, and other policy developments-this may be the most important Advocacy Day ever!

See below flyer for RSVP information and schedule of events

Visitor Services Phone: 503-986-1388
Americans with Disabilities Act (ADA) Resources at the Capitol

Join Us April 29 for Autism Day at the Capitol!

How ABA/EIBI Can Change Autism Trajectory

"...Early intensive intervention offers considerable benefit.
This concept became clear in the 1980s and has wide support today,[3],[4],[5] based on the success of early training compared with treatment that starts after children begin school...there is evidence that every year intervention is delayed progressively reduces outcome,...Brain plasticity refers to this ability of the brain to change under genetic and environmental forces, and this plasticity is at the heart of why earlier intervention works so much better than later intervention...So what does this have to do with autism? Plasticity explains why autism...can be helped by intervention in the form of intensive teaching, and why the younger the intervention is started, the better it works...The concept that early intervention is about brain plasticity is growing. [3],[8]..."
ARTICLE
Special Commentary: How Can Early, Intensive Training Help a Genetic Disorder?
William A. Altemeier, MD; and Leah E. Altemeier, PhD
Pediatric Annals 38(4), 167-172. March 2008,

SELECTED REFERENCES

3. Dawson G. (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder.
Development and Psychopathology, 20(3), 775-804.
doi:10.1017/S0954579408000370

4. Lovaas I.O. (1987).
Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

5. Johnson CP, Meyers SM (2007).
Council on Children with disabilities. Identification and evaluation of children with autism spectrum disorder. Pediatrics, 120(5), 1183-1215.
doi:10.1542/peds.2007-2361

8. Oberman L. M., & Pascual-Leone, A. (2008). Cortical plasticity: A proposed mechanism by which genomic factors lead to the behavioral and neurological phenotype of autism spectrum and psychotic-spectrum disorders.
Behavioral and Brain Science, 31(3), 276-277.
doi:10.1017/S0140525X08004378

HB 3000 Carried Over to Monday 4/27 Health Care Committee Mtg.

Due to the number of bills considered in the 4/24/09 meeting, the work session on HB 3000 by the
------------------------------

House Health Care Committee has been carried over to
Monday, April 27, 2009
Time: 3:00 P.M.
Hearing Room D
Oregon State Capitol, Salem, Oregon


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

It was stated in the audio transcript that there is a possible intention to send HB 3000 to the House Rules Committee, but no action has yet been taken to do so. (This statement was made in the last 6 minutes of the audio.)
-------------------
As an initial heads-up/FYI, IF HB 3000 is sent to the Rules Committee, those members are,

Rep. Arnie Roblan, Chair, (D-9-Coos Bay) 503-986-1409, rep.arnieroblan@state.or.us
Rep. Vicki Berger, Vice-Ch. (R-20-Salem) 503-986-1420, rep.vickiberger@state.or.us
Rep. Chris Edwards, Vice-Ch. (D-14-Eugene) 503-986-1414, rep.chrisedwards@state.or.us
Rep. Bill Garrard (R-56-Klamath Falls) 503-986-1456, rep.billgarrard@state.or.us
Rep. Sara Gelser (D-16-Corvallis & Philomath) 503-986-1416, rep.saragelser@state.or.us
Rep. Bob Jenson (R-58-Pendleton) 503-986-1458, rep.bobjenson@state.or.us
Rep. Mary Nolan (D-36-Portland) 503-986-1436, rep.marynolan@state.or.us
Rep. Tobias Read (D-27-Beaverton) 503-986-1427, rep.tobiasread@state.or.us


Staffing: Jerry Watson, Mike Reiley

Office: 453, Phone: 503-986-1532

Link to the Committee's Agenda page

Thursday, April 23, 2009

Excellent WA Article Covering the Issues of Treatment & Coverage

REMINDER: GET YOUR CALLS, EMAILS AND TESTIMONY
IN SUPPORT OF HB 3000 : Requires health insurers and state medical assistance program to reimburse for diagnosis and treatment of autism spectrum disorder.
IN TODAY!

The bill MUST BE approved in the House Health Care Committee to have a chance to go to the full Oregon House! See yesterday's post for who and how to contact.

--------------------------------
Excellent WA article summing up the situation and the points of view; while from our neighbors to the north, the issues are the same in Oregon.

Popular autism treatment often goes uncovered
By DEBBIE CAFAZZO, The News Tribune
October 12, 2008, updated Nov. 21, 2008


Talking points from the story:

INSURERS: Argue autism treatments aren't really medical, but are more educational and that education is the responsibility of the public schools. Can't cover teachers or paraprofessionals or parents who have training in ABA. Medical and rehabilitation services through licensed providers covered [pediatrician, psychologists, OT, PT, Speech].
[Comments: Autism is a medically defined and diagnosed disorder. The state can, and has in those states that have already passed such mandates, assist in determining competencies of service deliverers, and many of the mandate bills include such provisions, including those who are
Board Certified Behavior Analysts , awarded certified status dependent on meeting conditions of required education, practical supervised experience, passage of an examination and ongoing education in applied behavior analysis, The licensed professionals cited by the insurance representatives, while competent in their own subject area, may not have appropriate or specific training in ABA. The services of OT, PT and Speech are necessary as part of a multidisciplinary treatment team, but to deliver behavior analytic treatment, the team must also include behavior analysts to supply competently delivered applied behavior analysis.]


SCHOOLS: Schools can't go it alone. The Federal government does not provide enough funding through IDEA, and local funds are insuffient as well. Children would be unlikely to get intensive 1:1 ABA. Not something one agency is responsible for and needs multiprong approach.
[Comments: IDEA is now and historically underfunded. Local funds have multiple demands, and are not always stable, as well as insufficient. Underproviding therapy by lack of intensity has been shown to undercut effectiveness of therapy, with threshholds where a "little" ABA is not that different from "no" ABA. The schools have a valid point that they are unreasonably expected to deliver behavioral health for a complex medical disorder requiring intensive treatment, without support of the usual medical entitities. ]


FAMILIES : Spending through IRAs, spending through savings, cutting back on personal expenditures, but seeing big benefits of ABA therapy. Sometimes have to stop because they no longer can afford. One spouse has to stop working to take care of the child because professional services not provided. The insurance covered services of OT, PT and speech through licensed providers have per year visit limits, so they have to cut back or suspend treatment when coverage ends until next eligibility period.
[Comments: Families purchase or count on health insurance as part of employment package in anticipation of avoiding financial disaster in the event of a catastrophic medical event. Current situation is that they can have health insurance and STILL have to suffer financial disaster because treatment excluded, or face the frustrating scenario of knowing they will receive less than the recommended hours of therapy because of limits in a quarter or year. Equivalent would be rationing medication for a chronic condition or giving partial treatment, or suspending treatment from time to time for an acute condition--expensive and less effective because insufficient].


SOME POLITICIANS: Schools already have multiple demands and kids can't be left to be cared for by the schools. Mandating coverage treatments and ABA treatment ultimately saves taxpayer dollars because early treatment reduces life risk of being permanently dependent [at higher cost] on the state as adults, and may allow mainstreaming in typical schools by 8 or 9. Saves money in the long run.
[Comments: These politicians are taking the long, and arguably, the correct view on social policy. Access to health care is a social question. From a financial and societal cost view, sufficient expenditure upfront for competent and necessary medical treatment can reduce lifelong cost per child/person by millions of dollars over the lifespan, and at current conservative prevalence of 1/150 this longterm cost will be a potentially frightful public expenditure. One might also argue that it keeps parents in the workforce, reducing their lost revenue, and with better outcomes, the children have higher probability as future taxpayers or at least require reduced public support as adults.]

Wednesday, April 22, 2009

ACT TODAY to get the Health Care Committee to approve HB 3000!

ACT TODAY
to persuade the House Health Care Committee to vote YES on HB 3000
PLEASE GET CALLS, EMAILS & TESTIMONY IN TODAY, or TOMORROW AT THE LATEST: THE COMMITTEE MEETS FRIDAY 4/24

The following Oregon representatives on the House Health Care Committee have NOT yet indicated their support of HB 3000: Requires health insurers and state medical assistance program to reimburse for diagnosis and treatment of autism spectrum disorder.

HB 3000 MUST BE APROVED BY THIS COMMITTEE to make it to the NEXT STEP of being heard on the floor of the Oregon House.
  • Please be sure to CALL them, and ask them to vote YES for the bill when it is heard in the work session on Friday, April 24, 3PM, Hearing Room D, State Capitol!
  • Follow up phone calls with an email to the members of the committee who have not yet committed to support HB 3000. Use the Subject Line: I support HB 3000
Not yet committed to support HB 3000

The following representatives HAVE indicated their initial SUPPORT of HB 3000.
Please THANK them for their support and ask for their CONTINUED support with a YES vote on Friday at the work session!

----------------------
For more information, see the post from April 20!

THANK YOU FOR YOUR TIME AND YOUR ACTION

CBS News On ABA and Who Covers It

CBS News Medical Correspondent Dr. Jennifer Ashton, discussing the Federal Autism Treatment Acceleration Act of 2009, S. 819, which, like Oregon's HB 3000, is also considering coverage of applied behavior analysis treatment for children with autism,
"...(ABA) is considered by many to be the "gold standard" in therapy and treatment for children and other disorders, but specifically for autism...[on whether autism should be addressed by schools or medicine] right now autism is diagnosed by physicians, not teachers, so that really puts the onus on the medical community, and therefore, the insurance companies to cover it. I think we're starting to see now people thinking not just with their bankbooks here, but with their hearts, soul--they need to invest in the future of these children, or the costs will be much higher."

Monday, April 20, 2009

What's at stake--Best Outcome From Autism

Breaking Barriers: "Can You Recover From Autism?"
MSNBC, 5:17min
-----------

-----------

ACTION ALERT!!: Who's voting YES, and...NO on HB 3000

WE ARE DOWN TO THE WIRE
to persuade the House Health Care Committee to vote YES on HB 3000
PLEASE GET CALLS, EMAILS & TESTIMONY IN : THE COMMITTEE MEETS FRIDAY 4/24

The following Oregon representatives on the House Health Care Committee have NOT yet indicated their support of HB 3000: Requires health insurers and state medical assistance program to reimburse for diagnosis and treatment of autism spectrum disorder.

HB 3000 MUST BE APROVED BY THIS COMMITTEE to make it to the NEXT STEP of being heard on the floor of the Oregon House.
  • Please be sure to CALL them, and ask them to vote YES for the bill when it is heard in the work session on Friday, April 24, 3PM, Hearing Room D, State Capitol!
  • Follow up phone calls with an email to the members of the committee who have not yet committed to support HB 3000.
Not yet committed to support HB 3000

The following representatives HAVE indicated their initial SUPPORT of HB 3000.
Please THANK them for their support and ask for their CONTINUED support with a YES vote on Friday at the work session!

----------------------
Action Alert issued from Autism Speaks

A message from Autism Speaks,

"Dear Oregon Autism Advocate,

As you know HB 3000 has been introduced in the Oregon legislature that if passed will provide autism insurance reform for Oregon's children with autism to cover the treatments and therapies they need and deserve, including ABA therapy.

Now we have to get it through the Health Care Committee and on it's way to the floor so that it can become law!

We need your help to make some noise and let the committee know how very much you want this bill to pass on through the legislative process! They are hearing from the insurance companies...they need to hear from you!

HERE IS HOW YOU CAN HELP

1. CONTACT THE MEMBERS OF THE OREGON HOUSE HEALTH CARE COMMITTEE AND ASK THEM TO VOTE YES FOR HB 3000 EVERY DAY UNTIL THE MEETING ON FRIDAY!
The committee will be having a work group session this Friday, April 24, at 3pm. We need you to contact the following people each day between now and then and ask them to vote YES on HB 3000. If they indicate their support then be sure to thank them and ask for their continued support in the commitee. If you are a constituent, be sure to let them know. Keep your conversations short and polite. Then follow up in an email.
NOTE: Calls are way more important than emails. They need to hear your voices!


The following representatives have NOT yet indicated their support of HB 3000. Please be sure to ask them to vote YES for the bill when it is heard in the work session on Friday!
Please call them and follow up with an email EVERY DAY.
Use the Subject Line: I support HB 3000 .

Rep. Ron Maurer (R-3-Josephine Co.)-(503) 986-1403 rep.ronmaurer@state.or.us
Rep. Scott Bruun
(R-37-West Linn) - (503) 986-1437 rep.scottbruun@state.or.us
Rep. Jim Thompson (R-23-Dallas+) - (503) 986-1423 rep.jimthompson@state.or.us
Rep. Chris Harker (D-34-Washington Co.) - (503) 986-1434 rep.chrisharker@state.or.us
Rep. Michael Dembrow (D-45-Portland) - (503) 986-1445 rep.michaeldembrow@state.or.us

The following representatives have indicated their initial support of HB 3000. Please THANK them for their support and ask for their continued support with a YES vote on Friday at the work session!
Use the Subject Line: I support HB 3000 .

Rep. Ben Cannon (D-46-Portland) - (503) 986-1446 rep.bencannon@state.or.us
Rep. Chris Garrett (D-38-Lake Oswego) - (503) 986-1438 rep.chrisgarrett@state.or.us
Rep. Bill Kennemer (R-39-Oregon City+) -(503) 986-1439 rep.billkennemer@state.or.us
Rep. Tina Kotek (D-44-NE Portland) - (503) 986-1444 rep.tinakotek@state.or.us

2. ATTEND THE WORK GROUP ON FRIDAY, APRIL 24 AT 3PM.
Hearing Room D, State Capitol, Salem Oregon.

This will not be a hearing and no one's testimony will be heard but we would like parents to pack the room so that they can realize that Oregon citizens have a vested interest in HB 3000 and are watching them cast their vote. Wear Red. Bring signs in support of HB 3000 and pictures of your children.


3. FORWARD THIS MESSAGE TO EVERYONE YOU KNOW IN THE STATE OF OREGON!
We need to multiply our grassroots efforts exponentially over the course of the next few days. We need to generate thousands and thousands of calls. Please forward this to anyone who can help make calls to the committee to ask them to vote YES for HB 3000. They do not have to have a child with autism to be supportive!


THANKS FOR YOUR TIME AND EFFORT. Please call them and follow up with an email EVERY DAY.
This is very important so that HB 3000 can continue through the legislative process on become a reality.


For more information on HB 3000 visit our website at www.autismvotes.org/oregon !

Happy dialing!

Shelley Hendrix
Director of State Advocacy Relations
Autism Speaks
------------------------------------

Friday, April 17, 2009

Get testimony in before the 4/24 Committee Meeting!

The next meeting of the House Health Care Committee
currently deliberating on Oregon HB 3000 is
Friday, April 24, 2009, 3:00PM, Rm.HR D, State Capitol!

It is very important to send your testimony to ALL of the members of the House Health Care Committee about HB 3000 BEFORE the meeting, since there is a good chance that the Committee will be bringing the bill to a vote.

Be especially sure to contact the Chairman, Rep. Mitch Greenlick (D-NW Portland) and tell him to vote YES and get this bill out of Committee with a "Do pass" recommendation to the floor of the Oregon House.
See this post for the Committee contact information and what the talking points are.

House Health Care Committee Work Session
April 24, 2009, 3:00PM
Room HR D, Oregon Capitol, Salem, Oregon

Phone for the Committee/Committee Staff: 503-986-1286

Work Session


HB 3000: Requires health insurers and state medical assistance program to reimburse for diagnosis and treatment of autism spectrum disorder.
Is second out of three bills being addressed in the work session.

[Blog author correction: 4/20/09 -This is a work session and no spoken testimony will be taken by the Committee during this meeting. Apologies for the previous misstatement implying so. Written testimony is welcome and ENCOURAGED to be submitted to the Committee by email before the meeting. Please send such testimony to ALL the Committee members.]

To view the proceedings by Streaming video (live only and not archived)

To listen by Streaming audio, or to access the Audio Archive of this or other legislative activities
Legislative Audio and Video

Audio & Notes (4 of 4) from 4/8/09 House Health Care Committee Mtg

Rough notes from the
Audio recording of the 4/8/09 Public Hearing of HB 3000, House Health Care Committee.

Continuation of
third blog post on testimony before the Committee.
Notes pick up after testimony by
Dr. Gina Green, Ph.D., Board Certified Behavior Analyst-Doctoral (BCBA-D), Executive Director of the Association of Professional Behavior Analysts (APBA)
.
This post is on the testimony of two Oregon parents, a teen who has achieved normative functioning through ABA as a young child, submission of written testimony by Blue Cross/Blue Shield of Oregon, spoken testimony of Jake Oken-Berg,
Government Relations Consultant, Kaiser Foundation Health Plan, Portland, OR , closing statement by Dr. Gina Green, and adjournment of the meeting by Rep. Greenlick.

[Blog author note:
Because this is a summary of some points of an audio presentation, this is not an exact transcript nor should it be quoted as direct statements of the participants--readers should listen to, and consult the full audio of the Committee Meeting for the proceedings of the full meeting and testimony given.]

Running time of the audio 2:22:09

h:mm:ss
1:57:25 - Next speaker: [Parent #1] - Introduction as small-business owner family that believes in covering health care for all employees. In 2004, they contracted with Pacificsource at a cost of about $2500/month, including $1200/month for the family. In 2006 son diagnosed with autism. They received prescription for treatment, including ABA therapy, and have received denial after denial from insurance plan for any treatments still being paid for while paying $60,000 out of pocket for son's therapy, and have exhausted appeals process at Pacificsource. Unquestionably their son needs ABA therapy and he is only receiving half of the therapy he needs due inability to be able to financially expend more than they already are or to access health care that they pay for every month. Their pediatrician and other medical professionals continue to prescribe ABA therapy for their son. He's made great strides but needs much more to treat symptoms and behaviors. Financial and emotional resources are exhausted--beyond the financial burden they have lost time from other children just to deal with the health care crisis, and the other children are being robbed from opportunities that they could have, if there was not the strain on the family.

In sum, Pacificsource acknowledges that the policy covers the diagnosis of autism. The parent stands here today asking why they cannot have access to the therapy needed to treat this diagnosis?
2:00:13 - Rep. Greenlick - thanks the parent.

2:00:19 -[Parent #2] - Greets the committee, and introduces self as insurance agency owner and city council president and father of an 8 year old almost fully recovered from autism spectrum disorder. He sells a variety of insurance policies, and the question most often heard is whether a policy will "take care of me" if something unfortunate should occur. He always thought that this contractual process could be true until he himself had to deal with small group health insurance carrier for treatment of his son. At 3, his son was diagnosed by a medical professional and given a treatment plan of therapies and contacted insurance carrier to discuss how to proceed and told bluntly that the condition of autism not covered by the plan, as "not medically necessary". How could this be--this is a medical condition, diagnosed by a medical doctor, and somehow a single diagnosis is singled out and not covered by a policy. Cancer, leukemia, multiple sclerosis, muscular dystrophy, countless other conditions covered--why not autism?
After fighting with the insurance companies for awhile, the family moved forward with the aggressive treatments as every expert has said, the earlier the intervention begins, the better the results. They spent years going to a variety of providers and spending thousands out of pocket for treatments that greatly improved their son's quality of life. He went from non-verbal and being unable to be left alone outside the home, to now achieving an appropriate grade-level vocabulary, attending a mainstream classroom with an aide for only 30 minutes a day, vs. the previous year where he had a full-time aide, and loves going to school.
Lastly, as a city counselor for the past 10 years, this parent has learned is that constituents expect elected officials to demonstrate leadership and take action on a variety of issues; the citizens appreciated the city council for taking on a topic, held public hearings and open houses to get the information to make a decision--yes or no. That's what politicians and elected officials are sent to office to do.
This issue was already raised in the 2007 session, with an autism work group created, gathered information during 2008, and here now again, discussing a bill that will not even take effect for over 2 years. Delaying or ignoring an issue such as this, when it has already thoroughly vetted. He is here for the families who have yet to begin this journey, and to ask the elected officials to remove one of the roadblocks that will keep families from financial ruin and provide the insurance coverage to improve children's quality of life. All of those here today ask that you move HB 3000 out of Committee and for a vote to the full House. Thousands of Oregon children are depending on the Committee for action on this important issue. Thanks the Committee.
2:03:24 - Rep. Greenlick - You did notify the insurance company that the disease was covered, this was in 2007, uh, we did that in 2007.
2:03:35 Parent #2 - The diagnosis was back in 2004.
2:03:44 - Rep. Greenlick - We took care of coverage in 2007, but only for those things usually covered--diagnosis and specific therapies.
2:03:52 - Parent #2 - There are people falling through the cracks and I think we need to strengthen the bill.
2:03:57 - Rep. Greenlick - I also want to point out to the Committee that if we mandate this, we aren't mandating it for everyone; we are mandating it for about 40% of the population that's covered.

[Blog author note: This is true for most, if not all mandates. Those plans that are ERISA, self-insured, and sometimes under a minimum employee number are not covered by state-mandates for all conditions, not just autism. Experience is that in some states insurance plans which are are not dictated by the mandate statute have volunteered to extend the benefit after passage of such bills into law]

2:04:09 - Parent #2 - It's a small step in the right direction.
2:04:13 - Rep. Greenlick - It's just that when we went to mental health parity, we disappointed a lot of people in self-insured plans and others who found out that mental health parity didn't relate to them, it only related to a segment of the, it's a segment you deal with everyday.

2:04:33 - Speaker #3 - Testimony of Chris xxx
Chris xxx : Diagnosed at 2 1/2 with autism. Received ABA therapy.Lots of 1:1 intervention. Did two preschools a day for social aspect, same for Kindergarten. Then graduated from ABA. Parents paid out of pocket. He thinks he is doing very good, and doesn't feel he'd be where he is now get good grades, plays basketball and track (missing a practice to attend the hearing), played the tuba in the Metropolitan Youth Orchestra, and planning to attend a college that provides his interests. He considers himself a lucky case because his parents were able to pay and he did well.
2:06:30 - Rep. Greenlick thanks Chris for his testimony.

2:07:10-Written testimony of Regence BlueCross/Blue Shield, dated April 8, 2009, related to HB 3000. put into the record.

2:07:41 - Jake Oken-Berg, (Government Relations Consultant, Kaiser Foundation Health Plan, Portland, OR.)
[Blog author note: this may be somewhat more narrative and detailed than the previous testimony accounts]

Greets the members of the Committee. Special interest because father a psychiatrist at Kaiser for 30 years and mother pediatric social worker at Kaiser, and manages the developmental assessment clinic for ages 0-5, for 25 years.
At Kaiser, we followed the Autism Spectrum Disorder Workgroup during the interim (2008), and gave preliminary findings and attended outreach meetings. We also read the Oregon Health Resources Commission ASD Treatment Report requested by the 2007 legislature and released in October 2008. In light of the evidence presented by both groups, HB 3000 seems to be putting the cart before the horse. In the words of the HRC, the majority of the research studies looking at ASD treatments have significant limitations and most show insufficient evidence. Oregon's legislature has recognized the importance of making evidence-based medical decisions, but HB 3000 creates a specific exception for one condition.

[Blog author note: at the current time Oregon has 36 mandates, somehat below the national average as stated in the CAHI report of 2008, so the argument of "one condition" is somewhat misrepresentative. Other mandated conditions are alcoholism, general mental health, mental health parity and drug abuse. Until 2007 autism was generally excluded completely from health insurance coverage, and under HB2918, the rehabilitative therapies of speech, occupational and physical therapies were included.]

and exception for one specific treatment, applied behavior analysis.

[Blog author note: Again, HB 3000 also mandates, or more correctly reiterates the rehabilitative treatments of Speech-language, occupational therapy and physical therapy which were previously mandated via HB 2918 of 2007, as well as drugs. Applied Behavior Analysis is a specific treatment modality, but it is not the sole aspect of the bill]

It is noted by your own Commission's study that it lacks sufficient evidence under efficacy,

[Blog author note: Not exactly true. The exact statement, on p. 20, is
Finding: Limited evidence suggests that this intervention is effective in some
children but there is no method to determine which children are most likely to
benefit.
Given that efficacy and effectiveness have specific meaning in research and reporting conditions of outcome, it would be useful to know if these were used intentionally or genericly. To put it in perspective, the vast majority of the interventions in the HRC report were of "no evidence" or "insufficient evidence" to determine effectiveness, or evidence of "no effectiveness". To have limited evidence is a step up within this particular report.]

The Commission Report also noted that the lack of evidence of effectiveness does not equate to known evidence of ineffectiveness of an intervention,

[Blog author note: Again, in the case of EIBI, it is not "lack" of effectivenss, as the report itself states that there is evidence of effect with limitation, similar for PRT]

with that in mind, we here at Kaiser are doing universal screening of young children using the Ages & Stages questionnaire, four times before 36 months, and we are glad to see your work with the Governor to establish the Oregon Commission on ASD. We are committed to helping this new Commission and we are eager to continue providing our medical expertise on this bill, as well as any other legislation that you may consider on Autism Spectrum Disorder. Thank you.

2:09:54 - Rep. Greenlick - Jake, what does Kaiser do, once they diagnose someone as being likely being on the spectrum?
2:10:04 - Mr. Oken-Berg - One of the good pieces about the Ages & Stages Questionnaire, is that it now allows an immediate referral to Early Intervention, not only (?), but we've worked out a similar deal with Multnomah County, across the river in Vancouver, in Clark County without having to do a reassessment with the limited programs that do exist, to get young children immediately plugged into those. In addition, immediately following the work done by you in 2007, there is a sensory integration benefit that Kaiser has, that is significant, that did not exist before.

[Blog author note: From the Oregon Health Resources Commission report, p.25,
C. Sensory Integration Therapy (SIT)
In a 2003 review Tochel et. al. evaluated children with ASDs receiving Sensory
Integration Therapy vs. multiple comparators. Insufficient evidence was found about the clinical effects of SIT in children with ASD.
Finding: There is insufficient evidence to determine effectiveness.]

2:10:51 -
Oken-Berg -So Kaiser does some things that, uh, yeah...but in regard to ABA, we do not provide ABA therapy.
2:10:56 - Rep. Greenlick - Any questions?
2:11:01 - Rep. Greenlick - Does running a spirited campaign for mayor at 18 indicate any sign on the spectrum at all?
2:11:06 - Oken-Berg- I don't know.
2:11:12 - Rep. Greenlick - For those of you who don't know, Mr. Oken-Berg was a very serious candidate for mayor of Portland as a sophomore in college.
2:11:20 - Oken-Berg- 27% of the vote
2:11:23 - Rep. Greenlick - 27% of the vote. Not bad.
2:11:28 - Rep. Greenlick - Yes (to another Rep)
2:11:28 - Rep (?) - I'm unsettled, I'm grappling here. How do you deal with the data presented by Ms. Unumb, the Mayo Clinic data, etc.? Claiming, touting the efficacy of the treatment? You're suggesting that it's not nearly as...effective.
2:11:50 - Oken-Berg - Absolutely. Let me say two things. One, I've spent time in the last year talking wiht my family members but also the best experts in the field and actually hearing things that I never thought that I would, like the journal Pediatrics, which just last month took a subset of ABA therapy, ABI, and once again came to the conclusion that there's insufficient evidence that it does work--I have a copy of that abstract online for anyone that wants to.

[Blog author note: Despite Mr. Oken-Berg's apparent shock and awe, the journal referred to by Ms. Unumb is The Journal of the American Academy of Pediatrics, usually referred to as Pediatrics. The journal that he calls Pediatrics, is in fact, The Journal of Pediatrics, published by Elsevier, and is an entirely separate publication. The article referred to by Ms. Unumb is a policy statement of the American Academy of Pediatrics. The article referred to by Mr. Oken-Berg is a research meta-analysis, which may have significant weakness because the number of studies analyzed are too small to have accurate validity in the analysis.
See, Letter to the Editor of The Journal of Pediatrics, dated 12/4/08 from Tristam Smith, Ph.D., Svein Eikeseth, Ph.D., Glen Sallows, Ph.D. & Tamlynn Graupner, M.S., commenting on factual errors and errors of meta-analysis in the research article by authors Spreckley & Boyd, and being used by Mr. Oken-Berg to state lack of evidence.
What Mr. Oken-Berg also fails to mention is that two other meta-analyses have also come out recently with contrary results to the one he states. See the presentation by Dr. Gina Green citing the meta-analyses by Drs. Reichow & Wolery, and that of Drs. Eldevik, Hastings, Hughes, Jahr, Eikeseth,S., & Cross. Both of which come to the conclusion that EIBI/ABA does have positive effect]


Oken-Berg -Kaiser in addition last November, did its own analysis of its own studies around the country and came to the same exact conclusion that the Health Resources Commission did as well, and I've just tried to read that and understand it.
In regards to what was up earlier, in terms of research methodology and that you can discover things when you just look at one child, without a doubt that is true, anyone who studies autism spectrum disorders knows that no one child is the same on the spectrum, therefore no one type of therapy will work for every single child .

[Blog author notes:

This is a misrepresentation of what a controlled case study or N=1 research paradigm is. Real "one child" studies represent one particular research design used for particular purposes and experimental conditions; much more often, within-subject research with multiple clients is used and incorporating methodologies of multiple baseline, reversals, changing criteria. Small-n studies can be aggregated for meta-analysis and obtain both within-subject and between-subject information on and intervention.
The point seems to continue to be missed, either by intention or misunderstanding that as one of its core dimensions, ABA, in order to meet the dimension of effectiveness a priori and de facto, that choice of procedures from the science must be, individualized. "ABA therapy" is a composite of a variety of component techniques and technologies available to be applied, after direct observation, assessment and with ongoing data analysis towards meeting the target goal, with an eye to progressing towards the best outcome that may be achieved].

2:13:05 - Rep. Greenlick - No one therapy will work for any two children. Well, sometimes part of the problem is that no one child will be the same either.

[Blog author note: To use this line of thought, no manualized or standard application of speech, occupational or physical therapy should work for any two children, when clearly that is not the case, even for children with special needs. To reiterate again, from the
HRC Report, The exact statement, on p. 20, is
Finding: Limited evidence suggests that this intervention is effective in some children but there is n
o method to determine which children are most likely to benefit.
So, even with stated limits, it seems to be the case that this therapy indeed does work on any two children, since "some" is probably more than two.]

2:13:12 - Oken-Berg - We at Kaiser do not want to fall back on, there are so many studies stating a lack of evidence that we want to dismiss ourselves from the responsibility of finding what the right role is for the medical profession, community health, the schools and so forth...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, 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 at the same time, the Commission just created by Executive Order, we want to play an active role in that.

[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?
FWIW--VA has been one of the leading states in attempting to gain coverage of ABA via legislative insurance mandate, and did so this legislative year as well. So apparently the schools "doing much more" are insufficient for the citizens of VA to feel that they are obtaining adequate treatment of ASDs.
Perhaps it is also because IDEA is an educational Act intended by law to provide a Free and Appropriate Public Education, not to ameliorate or remediate treatable medical conditions. IDEA is not intended to apply maximum medical benefit, but to demonstrate adequate educational progress, with "adequate" being somewhat unspecified, applied by those whose training is primarily in education, and not medicine nor psychology. The point is that to claim that autism treatment is the provenance of schools is to ignore the function of public education, that autism is a medically diagnosed condition, and and attempt to foist the medical role onto that public entity and that public budget. ]


2:13:50 - There are alot of people applying to that, and we want to be on that, and one of the specific charges is the treatment piece, and if we can design better treatment studies, we want to be part of that. I just finished a discussion with the head of our center for health research, and that's an area that they're very interested in. One fortunate note, President Obama announced a four fold increase in his health budget for autism treatment studies, through the NIH. It would be very wonderful if as a state we could not just leave it as inconclusive--if we could tap into some of that money, perchance in concert with OHSU, CHR and in two years just get some better evidence

[Blog author comment: These statements are speculative, at best. If applied behavior analysis at the experimental intensities and variants already studied, is not part of the research plan, new research in Oregon would not make any impact on addressing relevant questions currently discussed. You can only obtain research data on that which is studied. As previously stated that Kaiser does not provide ABA, that possibility seems unlikely at best.
The blog author also seriously questions whether a large scale research protocol could be approved by IRB, submitted to the NIH, referreed, awarded, then recruited, assorted for matched-cohorts, experimentally studied, data taken and analyzed, article authored, paper submitted to a journal for possible acceptance, referreed, returned for edit, galleyed and published, all within the space of 2 years.
Addition and correction 4/20/09- Having looked into the granting opportunities offered under the Stimulus Plan, it seems even less likely that these are grants for applied research of immediate applicability--if this description is accurate, none of the $ 57Million will be spent on treatment modalities, but on genomics, genetics, environmental risk factors, biomarkers and biological signatures, and immune and central nervous systems interactions. Although it must be spent within 2 years, it is NOT anticipated that these studies will be completed, but only jump-started. As for the $10Million allocated for autism from the NIH Challenge Grants in Science, that money is targeted for biomarkers, novel interventions, and new tools for screening, among other topics, developing systems for pooling data, not pooling the data nor pooled studies,

While all of these are interesting, and possibly useful, basic research and preparation for new treatments and tests--none of these provide immediately the information claimed to be needed now. Since the window of maximum opportunity is only 2-3 years, it's hard to see how this research is going to be much help to today's 2 and 3 year olds.]


2:14:30 - But just going off of the work that has been done, it does not lead to the conclusion that we need a $36,000 benefit paid by insurers up to age 21. There is far more nuance to this than this bill captures.
2:14:45 - Rep. Greenlick - I think there's the methodological argument of the N of 1, compared to it, and I think that until we do the studies that need to be done that are acceptable to methodologists, without getting into an argument on the N of 1 question, the answer is going to be up in the air. And it's very, clear, and Mr. Oken-Berg made the point very clearly that the results generally do not say that there is no effect to the data, although there are some subsets where the data are clear, it seems to be no effect. There isn't enough data to say with scientific certainty that they're effective, and those of us who've spent a lifetime of work doing behavioral research, I understand the complexities of the issue of behavioral research, but ultimately, we need to be sure we make that investment so we do know what serves, and the problem in other types of complex diseases, it's not easy to make general prescriptions for things. 'Cause different things work for different kids...

[Blog author: which brings us back to the original point. Is the Representative's point that we should study this until we absolutely know what works for all kids which does not reconcile with the statement that different things for different kids? This still skirts the point that the HRC report itself states that ABA IS effective with limitation on knowing preemptively which populations might optimally benefit, and the progress and prescription question is addressed within the bill
by an annual review of clinical progress. ]

2:16:01 - Oken-Berg - and I purposefully, in regards to this not try to deal with the monetary aspect, because when you're dealing with wanting to help one child, obviously you do whatever it takes, within your capabilities, but in a public policy framework, that is also an important consideration--it's the same reason that the schools do not provide robust ABA benefit because there's a significant cost to it, for some benefit but it's across the board, and it's not medically proven.

[Blog author note: The gentleman states that some benefit with a less than robust implementation, which is inconsistent with his previous statements that there is unknown efficacy (and effectiveness, for that matter); neither statement strictly corroborating with the statement of the HRC report,. and that there is benefit is more consistent with the multistudent research studies of intensive ABA implementations compared to control.]

2:16:31 - Rep. Greenlick - Go ahead.
2:16: 32 - Oken-Berg - I was not going to go with the financial aspects, you went right where I was hoping you would, and I was wondering how much it it has to do with statistical analyses, and it's been a while since my statistical analysis class, but N of 1 was not something we had a lot of faith in, or to place alot of focus on.

[Blog author note: Again- the gentleman somewhat glibly dismisses and misrepresents the issue. "One person" case study is seldom done, but has value for particular reasons of novel or variables particularly of interest using in-subject research. Most, if not all, ABA research uses far more than "1" students, and with different kinds of control methods to distinguish real treatment effects, such as multiple baseline, reversal (if possible), comparison groups. This concentration on this point is attractive because it's an easy target, but hardly represents the real situation of significant discussion and refinement of "evidence" within the medical community, and the question of whether Randomly Controlled Studies (RCT) alone really are the claimed "gold standard", and are suitable for measuring effects in individuals, given that some large-scale RCTs have resulted in medications released which had to be later pulled, and that strict dependence on RCTs as defining strong evidence and effectiveness, may in fact be used to exclude and gate-keep treatments that are, in fact, effective.]

2:16:57 - Rep. Greenlick - If you have some spare time.
2:16:59 - Oken-Berg -Yeah.
2:17:00 - Rep. Greenlick - If you had some time, I think we would value your judgement--I've read about 10 cases of material on this, about 10 cardboard boxes, and I think it would be very useful from your background to get a look, at least starting from the Oregon Health Resources Commission and the reason that I asked for our other witnesses to to get us other studies is that it would be useful although we quickly get mired in the N of 1 argument, which is legitimate, I guess.

[Blog author's note: With due respect to Mr. Oken-Berg, who had an excellent HS and college record, graduating with a degree in political science, and has a part time avocation in a band besides his profession as a Government Relations Consultant, and was a political staffer with Sen. Ron Wyden, this particular skill set seems neither appropriate nor sufficient background to serve as evaluator of research design, evidence base, quality of meta-analysis, across different scientific fields using different experimental designs.]


2:17:33 - Oken-Berg - And in addition, we are happy to provide any of the folks at Kaiser, which is not only in this region, but has networks nationwide, to get you evidence, and we have pediatricians who are lifelong advocates for autism, both parents and children. So we'd be happy to provide that to you and and directly.
End of Mr. Oken-Berg's testimony

2:17:52 - Rep. Greenlick - Dr. Green, are you still there?
2:17:55 - Gina Green - Yes, I am.
2:17:57 - Rep. Greenlick - How about a last word from you?
2:18:00 - Gina Green - I would suggest in evaluating the reviews that have been done of research on applied behavior analysis, that you use the same standard and look for the same conditions as when you review your medical treatments, that applied behavior analysis, that is behavior analysis is a discipline. It is not the same as clinical psychology, it is certainly not the same as pediatrics, and as I mentioned, this discipline has it's basic research methods. Many of the reviews that I have seen have been conducted by people who have not had training in behavior analysis and also have not had training in its research methods and that's like asking a bunch of us behavior analysts to evaluate a medical treatment.

2:18:48 - I don't think that you would treat that as very credible. You need some expert behavior analysts to take a look at the treatment. They're the ones who know the treatment and know the research methodology, and I would really recommend looking at the documents and studies and a book that has recently been published by the Journal of the American Medical Association on evidence-based medicine regarding N of 1 studies- they are only talking about ONE KIND of single case experiment, evaluating medical treatments. There are also several kinds of other treatments that are tried and true for evaluating changes in behavior. At this time, autism is behaviorally defined, behaviorally diagnosed, and I would dare say that there are a number of medical treatments covered, for example, I heard the gentleman from Kaiser mention Sensory Integration Therapy- there has not been a scintilla that that is beneficial for children with autism.

Again I am recommending that you hold ABA to the same standard that you hold other interventions. Other treatments and medical treatments that are far from perfect.

2:20:17 - Rep. Greenlick - If we're going to hold it to the same therapy, I can assure you that there is not a single other therapy mandated by statute. It's up to the insurers and the providers to determine how to treat a disease that they recognize. This would not be holding it to the same standard, this would be creating an entirely different social policy standard. That's why we're having some trouble with it.

[Blog author note: It could be interpreted by allowing continued exclusion and denial of ABA therapy of suffient intensity, quality and duration applied by those trained in the discipline, that the state is applying a mandate of sorts by restricting access to the availability of ABA to those willing and able (the latter the key point of HB 3000) to pay out of pocket, would choose that therapy, (since even when available, others will choose other treatment modalities, including eclectic models or alternative treatments).
Social policy also includes availability and access to service and treatment (see, mental health parity)]


2:20:52 - Gina Green - There a framework of scientific standards and other kind of standards, and again if you had people who knew about that treatment and studying that treatment helping to evaluate it, to evaluate that evidence--I would suggest doing the same for applied behavior analysis. It's not like clinical psychology, it's not like medicine, it's definitely not like a drug treatment or a shorter term medical treatment, it's vastly different from that.

2:21:25 - Rep. Greenlick - Well, I'm going to end this call, and I'm going to gavel out of this hearing and adjourn the Committee. Thank you all very much for coming,

END OF AUDIO TRANSCRIPT