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]
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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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