Showing posts with label testimony. Show all posts
Showing posts with label testimony. Show all posts

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

THANK YOU FOR YOUR TIME AND YOUR ACTION
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Monday, April 20, 2009

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!
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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
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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
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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 no 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
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Thursday, April 16, 2009

Audio & Notes (3 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 second blog post on testimony before the Committee.
Notes pick up after testimony by Ms. Lorri Unumb, Attorney, Senior Council of Autism Speaks.
 .
This post is on the testimony of Dr. Gina Green, Ph.D., Board Certified Behavior Analyst-Doctoral (BCBA-D), Executive Director of the Association of Professional Behavior Analysts (APBA).

[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

hr:min:sec
1:46:50 - Rep. Greenlick - Asks Dr. Green to introduce herself. (Dr. Green is testifying by telephone).
1:46:56 - Gina Green - Have been working with autism for a number of years and legislation for a couple.
[Blog author's note: Dr. Gina Green, Ph.D., BCBA-D, is the Executive Director of the Association for Professional Behavior Analysts (APBA) was at one time the Research Director at The New England Center for Children, a large, and widely known program for children with autism in Massachusetts, and has co-authored many research articles on treatment of autism through Early Intensive Behavioral Intervention (EIBI), a noted article on the cost analysis of social savings achieved through EIBI, and the popular book, Behavioral Interventions for Young Children with Autism: A Manual for Parents and Professionals (1996).]

1:47:18 - Rep. Greenlick helps Dr. Green with a couple of procedural things with slides.
1:47:30 - Gina Green - Because of time constraints (I'm) jumping ahead in presentation to cover the main points, with emphasis on the scientific evidence supporting ABA.
[Blog author note: Powerpoint shared at the public hearing. Author: Dr. Gina Green, Ph.D., BCBA-D. All copyrights preserved. Posted with Dr. Green's kind permission. Do not reproduce or redistribute.]
-----

-----
Behavior analysis is a natural science of behavior that, like other sciences, has developed research methods that are particular subject matter. Some of those include direct observation and measurement of behavior, because behavior is what we are interested in studying, changing and improving. We are also focused by definition individual behavior as it unfolds over time and interacting with the environment, so the research methodology and research designs are what are referred to as single-case research designs or within-subject designs, that are truly real experiments, rigorous experiments when done properly, where an individual's behavior is intensively studied under both control and treatment conditions. The term "single-case" is a misnomer in that although the focus is on one's behavior, there is often more than one participant in these studies and you can repeat these studies across any number of participants, and aggregate data across them. The focus in this scientific approach is on clinically significant changes in individual behavior, a person's condition improved over their baseline or control condition or status, so it's not the traditional kind of group design study where you get a group that gets a treatment, another that does not, and then there's some comparison of average scores of some measure from each of those groups compared statistically. You can make a strong case that some measure on a group really doesn't tell you anything about what happened to the individual members of the group and comparing mathematical abstractions like group averages statistically doesn't give you very much information about how each person in the group did or did not do in response to the treatment. So there's growing recognition of the benefits of these within-subject single case designs, they are now included in a number of protocols for developing evidence-based practice guidelines, in fact have been adapted, at least one kind of single case design has been adapted by medical researchers and referred to as N of 1 research designs. Some leaders of the evidence-based medicine movement such as Gordon Guyatt,, has picked up these designs and views them as superior to to the typical between-group, randomized clinical trials.

[Blog author's note on reference, Guyatt,G., Rennie, D.,Meade, M.O.,& Cook, D.J User's Guide to the Medical Literature: A Manual for Evidence-Based Clinical Practice, 2nd edition, McGraw-Hill, (2008). Link is to the JAMAevidence website ]

1:50:54 - Rep. Greenlick -Y..y..yuh, we aren't into a research methodology discussion here, but I think that's a slightly overstated case that N of 1 is superior to randomized clinical trials of groups, I would be happy to have that discussion with you offline.
1:51:09 - Gina Green - There's an exact reference in my slides as to the source of that information. There are difference approaches to science and research; randomized clinical trials actually have a number of disadvantages when it comes to extrapolating from them to the individual client or patient, and that's what these folks in evidence based practice in medicine have recognized, and why they are piloting N of 1 studies.

But those are the foundation of what we do today in applied behavior analysis interventions for people with autism rest on literally hundreds of studies using these single case experimental designs, to evaluate specific behavior analysis techniques for increasing functioning in virtually all
areas, and also for reducing problem behaviors that put people with autism at pretty serious risk with a future jeopardized by those behaviors, and there is ample evidence in reviews and meta-analyses showing the effectiveness of ABA use for dealing with those problem behaviors.

The intervention model that most people refer to as ABA therapy is a model that combines many of those evidence-based specific techniques into a package and into a comprehensive program for youngsters with autism, where all of their skill deficits, behavioral difficulties, and so on are addressed, in a very intensive way, and these are the studies that have gotten the most attention in the last 10 years or so. These are generally children under the age of 6 receiving 25-40 hours a week of highly individualized ABA intervention done in a variety of settings, but typically begins in the home. It's a very dynamic, very, very individualized, with the goal for each and every child, of helping them develop skills that will help their functioning and help them stay healthy and successful in the short run and also in the long run.

There have now been a number of studies on this early intensive comprehensive model of ABA treatment and you see them summarized in my slide number 9 . The first group to do this and to document the effectiveness of course was the UCLA group, Ivar Lovaas and his colleagues--they have now published at least 7 controlled studies, and other behavior analysts have published 4 studies...
1:54:26 - Rep. Greenlick - We now have 15 minutes and 5 more people who wish to testify, so..
1:54:29 - Gina Green - Okay,
1:54:30 - Rep. Greenlick - If you could wrap it up...
1:54:32 - Gina Green - If we can jump up and look at slide 10, the main findings from these studies demonstrated that applied behavior analysis comprehensive, intensive early intervention produces substantial improvement--much more than typical treatment, eclectic intervention, and lower intensity ABA treatment in all these areas, and for many children, there are large enough improvements that they are able to function almost normally with very little ongoing specialized help from the age of 6 or 7 or 8 years old. Other children make more modest gains but are doing better
than if they had not received that treatment. Other interventions, even done with similar intensity, 1:1, for the same number of hours have resulted in minimal effects, and in some cases children have even regressed in some studies.

I just want to point out that there have been a couple of recent meta-analyses of research on intensive early intervention ABA for autism. I am familiar with the Commission Report that was done here in Oregon, and I do believe that there are more studies done since that time and the meta-analyses that I'm going to talk about just for a second here incorporate the more recent studies and did a much more thorough and informed evaluation of the research.

One of them was published recently in the Journal of Autism and Developmental Disorders, you see summarized on slide 12, did find--meta-analysis methods, I am not an expert on those, but they do allow an unbiased way of aggregating data across studies and letting us know what size effects might have been produced by an intervention, in this meta-analysis...

[Blog author note on referenced meta-analysis: Reichow, B. & Wolery, M. (2009). Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA Young Autism Project model. Journal of Autism and Developmental Disorders, 39(1), 23-41.
DOI: 10.1007/s10803-008-0596-0]

1:56:40 -Rep. Greenlick- I am going to have to ask you to end this testimony, we have other people who want to testify. Could you send us this material?
1:56:46 - Gina Green - The actual studies?
1:56:48 - Rep. Greenlick - Yeah.
1:56:55 - Gina Green - Both of the metaanalyses, one is summarized on page 12, while the other more recent one on slide 13; both of them found clear evidence that ABA produces moderate to large effects in improving the functioning of children with autism, and recommended that it be the intervention of choice. I can send you both those meta-analysis papers if you'ld like.

[Blog author note on referenced meta-analyses:
Slide 12: Reichow, B. & Wolery, M. (2009). Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA Young Autism Project model. Journal of Autism and Developmental Disorders, 39(1), 23-41.
DOI: 10.1007/s10803-008-0596-0

Slide 13: Eldevik, S., Hastings, R.P., Hughes,C., Jahr,E., Eikeseth,S., & Cross, S.C. (In Press- Publication May,2009), Journal of Child and Adolescent Clinical Psychology.
Description of study:" A systematic literature search for studies reporting effects of Early Intensive Behavioral Intervention (EIBI) identified 34 studies, nine of which were controlled designs having either a comparison or a control group. We completed a meta-analysis yielding a standardized mean difference effect size for two available outcome measures: change in full-scale intelligence (IQ), and/or adaptive behavior composite (ABC). Effect sizes were computed using Hedges'™ g. The average effect size was 1.10 for change in IQ (95% confidence interval (CI) = .87, 1.34); and .66 (95% CI .41, .90) for change in ABC. These effect sizes are generally considered to be large and moderate, respectively. Our results support the clinical implication that at present, and in the absence of other interventions with established efficacy, EIBI should be an intervention of choice for children with autism."]

1:57:13 - Rep. Greenlick - Yes, thank you, I would. Thank you very much. Would you like to stay on and listen?
1:57:20 - Gina Green - Sure, I'd love to if that's okay.

Conclusion of Dr. Gina Green's testimony.

Next, and last, blog post on the meeting will be remaining testimony from parents, a Portland teen who achieved normalization as a child through EIBI/ABA and is "doing great", and representatives from Blue Cross/Blue Shield, and Kaiser Family Foundation.
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Wednesday, April 15, 2009

Audio & notes (2 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 first blog post on testimony before the Committee. Notes pick up after testimony by Representatives Peter Buckley and Chris Edwards.
These notes are of the testimony of Ms. Lorri Unumb, Attorney, Senior Council of Autism Speaks.
[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

hr:min:sec
1:27:03 - Rep. Greenlick reopens testimony on HB 3000
1:28:05 - Ms. Lorri Unumb (Senior Council Autism Speaks and author of the South Carolina mandate) testimony -
[Blog author: Slides of testimonial presentation at the hearing. Author: Lorri Unumb, Esq. All rights reserved. Please do not reproduce or distribute. Some slides did not upload for correct display and the posted presentation does not represent the exact material shown]
---------

---------
Autism is a medical condition, diagnosed and treatment prescribed by medical doctors. Description of SLIDE 5 PDDs-3 ASDs. Most commonly described treatment is applied behavior analysis (ABA)/"ABA Therapy" used for many decades but excluded from insurance coverage. Discusses basis of exclusion by insurance as "experimental", but conclusion not supported by the science, the U.S. Surgeon General, the National Research Council, the American Academy of Pediatrics and others have endorsed ABA. The Mayo Clinic...
1:30:11- Rep. Greenlick- Who are those organizations again?
1:30:06 - Ms. Unumb- repeats groups. The American Academy of Pediatrics in 2007 stated,
"...The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups..

[Blog author note: The statement from the American Academy of Pediatrics, can be found at,
Myers, S. M. (2007). Management of Children With Autism. Pediatrics. Embargo copy, Monday, Oct. 29, 2007.]

Also mentioned that the Mayo clinic put out a research study in 2006 that provides clear and convincing report that,
...Decades-worth of scientific research provide clear and convincing support for the technique referred to as Applied Behavior Analysis (ABA)... "

[Blog author note: The reference is,
Barbaresi, W. J., Katusic, S. K., & Voigt, R. G. (2006). Autism: A review of the state of the science for pediatric primary health care. Archives of Pediatrics & Adolescent Medicine, 160(11), 1167-1175.]

Studies have shown that if ABA therapy is applied intensively and by properly trained therapists, approximately half of the children will overcome their autistic characteristics to the extent that they can enter first-grade indistinguishable from their typical peers. And the other half that don't have this best outcome still make significant gains such that they need fewer supports for the rest of their lives.

1:31;40 - Rep. Greenlick- And do you have that study as well?
1:31:45 - Ms. Unumb does and happy to provide to the Committee
1:31:50 - Ms. Unumb- As mentioned ABA must be administered intensively, often 40 hours a week, which makes it expensive. Most children's program costs are not that high. In their case they had personal resources to be able to meet costs through personal adjustments. But how many regular Oregon families would be able to take similar steps and financial sacrifice to pay for this--even if willing, you have to have a house to sell or a salary to sacrifice in order to get it. Most cannot afford it, and most of the children are going untreated. It's sad that in the US that we know of a treatment for this disorder, but if your parents are not wealthy, you can't get it. And it's unfair that these are families who are paying insurance premiums...
1:33:25 - Rep. Kotek - Mentions one reason that she signed on is because there is a cap in annual amount. Do you think cap is unrealistic?
1:33:36 - Ms.Unumb - For most severe cases may represent half-coverage, but understands concerns. It is sad and unfair that families who are paying insurance premiums every month for exactly this kind of unforseen and unprovoked medical disaster.
There is a 2006 Harvard study from the School of Public Health study reporting cost for improperly treated autism is $3.2 million cost over lifespan.

[Blog author note: See, Ganz, M.L. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics & Adolescent Medicine, 161(4), 343-349., and
News report from the Harvard Public School of Health, April 25, 2006]

1998 PA study savings of projected an actual cost savings to the state of more than $1 million/child. To take the conservative national prevalence figure of 1/150, with the prevalence rate and unknown reasons for increase and with only those who can afford private pay accessing effective treatment, it's going to cost immense future taxpayer money for special education, adult care and institutional services. Can't handle autism the way it always has been in the budget because this is not past prevalence of 1/10000, at 1/150 that is going to severely impact the budget.

Nine other states now have insurance coverage of ABA for autism treatment: 2007 -TX, SC, 2008 - AZ, FL, LA, IL, PA, and in 2009 - NM. including ABA, and costs have been negligible. 25 states considering bill this year.

[Blog author note- since this testimony, MT has also passed a mandate, so now ten states have coverage of ASDs and ABA as treatment modality in statute.]

In 2001, IN passed a mandate, and MN in same year in court settlement with BCBS began providing coverage,

In SC (where mandate passed in 2007) children are making progress, providers setting up networks, getting satisfactory reimbursement rates, and no insurers are leaving the state, or businesses leaving because of the mandate. In Indiana, Department of Insurance, which has had a mandate since 2001, they report that the cost has been negligible.

CAHI 2008 report cited, re: premium increase. In 2008, the cost 1%. Aligns with actuarial estimates from Autism Speaks.

[Blog author note: Report cited is, Health Insurance Mandates in the States 2008, Council for Affordable Health Insurance, Victoria Craig Bunce, Director of Research and Policy,JP Wieske, Director of State Affairs
See this page for table of estimated costs.]

1:38:07 Interruption. IN and MN have actual claims data. Ask for that to see what actual costs have been in those states. Insurance reform also creates creates jobs in full-time providers.

Role of schools--autism is a medical condition, not a learning disorder. Federal government does not specify amelioration in IDEA, so schools should not be tasked with treating the condition.
ABA is based on 1:1 intervention, and IEPs are only predicated on academic skills vs. adaptive skills.

What about Medicaid waiver? Problem is that state has to fund it, and even with matching funds, not able to achieve treatment without large waiting lists, which squanders window of opportunity.

1:42:57 -Ms. Unumb-Policies may cover treatment but not cover ABA (example CIGNA), so what's the point? An analogy is covering cancer, but not covering chemotherapy. This is the reason for asking for via mandate. Johns Hopkins recommends ABA, Mayo clinic recommends ABA, Education and Medicaid are already performing roles, now asking for insurance to.

1:45:07 - Rep. Greenlick - brings up Health Resources Commission report and asks whether read.

[Blog author note: Report referred to is, Report: Evidence for Effectiveness of Treatments for Autism Spectrum Disorders in Children and Adolescents. Oregon Health Resources Commission, October 2008. 74pp.]

1:45:17 - Ms. Unumb - skimmed it.
1:45:17 - Rep. Greenlick - it doesn't seem to back up assertions made.
1:45:27 - Ms. Unumb - From legal background, what I know is that you can find study to say anything.
1:45:32 - Rep. Greenlick - Disputes the statement's fairness, since HRC is the official body of the state designed to use rigorous techniques to evaluate research findings, and that the statement could be flipped against proponents of HB 3000's arguments.
1:45:57 - Ms. Unumb -Does not mean to be disrespectful or disparaging, just that other evidence-weighing bodies, such as TRICARE, the American Academy of Pediatrics have also weighed the evidence and come to the conclusion that ABA is a sufficiently evidence based effective treatment. Dr. (Gina) Green, (Ph.D, BCBA-D) (next to present testimony) can address these points.
1:46:30 - Rep. ? -TRICARE is cheap, so they're not going to do anything that's not...
1:46:35 - Ms. Unumb -TRICARE examined this question for a number of years before launching its benefit, but they have been covering ABA therapy for a number of years.

[Blog author note: Example of TRICARE coverage.]

Conclusion of Ms. Lorri Unumb's testimony.

Next post on this meeting will pick up at the testimony of Dr. Gina Green, Ph.D., BCBA-D, Executive Director of the Association of Professional Behavior Analysts (APBA).
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Tuesday, April 14, 2009

Audio & notes (1 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

[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
Counter times are noted because there is a break in the Public Hearing on HB 3000 for a
workgroup session and testimony on HB 3000 reopens and resumes approximately an hour later.

hr:min:sec
0:6:20 Rep. Greenlick/Chair of Committee - Opens the public hearing.
0:6:30 Rep. Peter Buckley-introductory and general remarks to the issue and what exists for children within the state of Oregon, and compares the issue of insurance and access to treatment and future independence.
0:9:00 Rep. Chris Edwards - Talks of role in hearings recently held around the state. 1/89 ASD kids in Oregon. Every stop heard cries from parents looking for payment mechanism for treatment. Argues services are essential and also underfunded. ASD at intersection of education and medical. Thanked committee.
0:13:06 Rep. Greenlick - Thanks Reps. and discusses human cost involved with this disease.
0:14:24 Rep ? - Was it a known or an unknown that ASD fell through the cracks when Mental Health Parity (SB 1) was passed.
(Time) :Rep. Edwards-While work is being done education in EI/ECSE to be more efficient and aggressive, insurance is asked to participate.
0:15:39 Rep. Kemmerer?-Perhaps a technical question-Bill (HB 3000) cites DSM-IV, but soon obsolete and is DSM-V more appropriate?
0:16:30 Rep. Edwards - Diagnostics issue will be provenance of Governor's Council (Body currently being formed per passed 2009 HB 3001)
0:17:09 Rep. Kotek - Intrigued by defining autism service provider. What is source?
0:17:35 Rep. Buckley - Taken from a template used in other states.
0:18:00 Rep. Greenlick - Questions "unusual" choice of defining particular treatment (ABA) and HRC report, that not broad base medical support of efficacy.
0:18:55 Rep. Edwards - Emphasis getting appropriate treatments to these kids and concerned that these are not be held to a higher standard than another treating other conditions. Concerned that ABA being held to a higher standard.
0:20:12- Rep. Greenlick - critiques mandating specific treatment modality in statute, in addition to mandating service.
0:20:28 - Rep. Edwards- perhaps unusual, but unusual condition, and because of where it lies there have been loopholes against coverage, and ergo the bill is more prescriptive.
0:21:30 -Rep. Greenlick closes testimony on HB 3000 to be opened later same day.

Next post on this meeting will pick at 1:27:03 of the audio transcript, where the testimony reopens with the testimony of Lorri Unumb, Senior Council of Autism Speaks.
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