Thursday, April 16, 2009
Audio & Notes (3 of 4) from 4/8/09 House Health Care Committee Mtg.
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.
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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.]
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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.
Wednesday, April 15, 2009
Audio & notes (2 of 4) from 4/8/09 House Health Care Committee Mtg
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).
Tuesday, April 14, 2009
Audio & notes (1 of 4) from 4/8/09 House Health Care Committee Mtg
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.
Monday, April 13, 2009
April 29 is "Autism Day" at the Oregon Capitol
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From: Rep Edwards C <edwards.c.rep@state.or.us>
Subject: CORRECTION: April 29th - Autism Day at the Capitol!
Date: Monday, April 13, 2009, 3:55 PM
SCHEDULE
9:30AM – 11:30AM
- Introductions & Greeting from State Reps. Peter Buckley and Chris Edwards
- Legislative updates
- Tips on the Legislative Process and Public Testimony
11:30AM – 1:00PM
- Tour of the Capitol / Floor Session Introduction
- Lunch provided
- Individually arranged meetings with Legislators / Staff
1:00PM -3:00PM
Hearing in the House Committee on Education
- What is working in Education for students with ASD?
- What is not working?
- What can be done to make it better?
- Invited Testimony (one hour)
- Public Testimony (one hour)
- Individually arranged meetings with Legislators / Staff
RSVP
Please RSVP. Let us know if you will be attending. We want to make sure we have sufficient materials and lunch!
RSVP by calling (503-986-1414) or emailing Rep Chris Edwards at rep.chrisedwards@state.or.us.
MEETING YOUR REPRESENTATIVE AND/OR SENATOR
Make appointments to meet with your Representative and / or Senator in advance of coming to Salem .
Check the Legislative Website if you need help finding your Legislators or making contact:
Sunday, April 12, 2009
Timeline and Call for action on HB 3000
Timeline and Call for Action so far on Oregon House Bill 3000 (HB 3000) Sponsored by Representatives BUCKLEY, GREENLICK, C. EDWARDS; KOTEK, TOMEI, Senator BATES
Requires health insurers and state medical assistance program to reimburse for diagnosis and treatment of autism spectrum disorder.
HB 3000 seeks to end autism insurance discrimination and provide children with medically necessary, evidence based treatments and therapies that they need and deserve...including ABA therapy!
TIMELINE SO FAR,
- March 3, 2009: HB 3000 introduced in the Oregon House by Rep. Peter Buckley
(D-5-Ashland) - March 9, 2009: Assigned to the House Health Care Committee
- March 31, 2009: Endorsed by Autism Speaks
- April 8, 2009: First public hearing by the House Health Care Committee at the State Capitol.
- April 9, 2009: Update and Call for Action by Autism Speaks/Autism Votes- below.
Report on the meeting with photos and call for action is also at the Parents Helping Parents website. - April 24, 2009, .Work session by the House Health Care Committee at the State Capitol
- April 29, 2009: Autism Advocacy Day at the Capitol building Room 350, 9:30 - 5pm.
CALL FOR ACTION
We have officially kicked off autism insurance reform legislation in the state of Oregon.
The April 8 Committee hearing on HB 3000 was amazing ! Our advocates gave incredible testimony. Thanks so much to those who attended and to those who testified.
Now, YOUR HELP is URGENTLY NEEDED to get HB 3000 passed OUT OF COMMITTEE and heading toward the Oregon House floor to move the bill toward passage into law that can be a reality for Oregon's children with autism.
Here is How You Can Help:
1. CONTACT REPRESENTATIVE MITCH GREENLICK (D-33-NW Portland), CHAIRMAN OF THE HOUSE HEALTHCARE COMMITTEE, AND ASK HIM TO SCHEDULE A VOTE ON HB 3000!
(503) 986-1433 rep.mitchgreenlick@state.or.us
Let him know that you want HB 3000 to be able to continue through legislative process and you would like him to move for executive action and a vote on HB 3000. You are also asking him to vote YES when that vote is called.
PHONE CALLS are extremely important. Thank the Representative for his sponsorship of HB 3000, but also explain to him why this measure is so important to your family and your child with autism and take the time to FOLLOW UP by email and personalize your email in more detail.
The Chairman sets the agenda for the Committee and has a leadership role in progress of bills, so it is very important to let Rep. Greenlick know that stakeholders want this bill to be approved by the Committee and come to the floor of the legislature for a vote.
2. CONTACT ALL THE COMMITTEE MEMBERS AND ASK THEM TO VOTE "YES" WHEN HB 3000 IS CALLED FOR A VOTE! Again, CALLS ARE VERY IMPORTANT. If you are a constituent in the member's district, BE SURE TO LET HIM OR HER KNOW. Follow up IN WRITING with a more detailed email, explaining how HB 3000 will positively impact your family! Some suggestions on talking points to highlight in your email are below.
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. Bill Kennemer (R-39-Oregon City+) -(503) 986-1439 rep.billkennemer@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. Ben Cannon (D-46-Portland) - (503) 986-1446 rep.bencannon@state.or.us
Rep. Michael Dembrow (D-45-Portland) - (503) 986-1445 rep.michaeldembrow@state.or.us
Rep. Chris Garrett (D-38-Lake Oswego) - (503) 986-1438 rep.chrisgarrett@state.or.us
Rep. Tina Kotek (D-44-NE Portland) - (503) 986-1444 rep.tinakotek@state.or.us
Another option is to use the modifiable cyber-letter at AutismVotes to email the Health Care Committee members.
Suggested talking points:
- Education and Medicaid are at the table and HB 3000 brings health insurance to the table as well in an integrated approach to treatment and medical managment of autism.
- Autism can be compared to diabetes, cystic fibrosis, asthma, and other medical conditions diagnosed during childhood that are covered by insurance policies, and that exclusion of the medical condition of autism represents discrimination.
- Indiana's mandate for autism insurance coverage went into effect July 2001 and reports negligible changes in insurance premiums due to this coverage. This is important, since the "cost" may be forwarded as a reason to stop the bill's progress. Many cost analyses have shown that the projected increase in premium costs will be very low, and a bargain compared to future costs of treatment and management by society and families if coverage continues to be excluded or rejected by health insurance.
- The most commonly prescribed treatment for autism is Applied Behavior Analysis (ABA). ABA at an appropriate level of intensity and duration has been endorsed by a United States Surgeon General, the New York Department of Health, the National Research Council, the Association for Science in Autism Treatment, and the American Academy of Pediatrics as an appropriate treatment modality for children with autism.
(The report of the Oregon Health Resources Commission (HRC) in 2008 reported that data is insufficient to support ABA as a strongly evidence treatment, primarily on the basis that ABA studies use a particular research design, however other treatments in this report received even weaker evaluations). - YOUR PERSONAL EXPERIENCE.
3. CONTACT EVERY AUTISM FAMILY, FRIEND AND ADVOCATE YOU KNOW AND URGE THEM TO ALSO TAKE ACTION ON HB 3000.
4. GO TO THE AUTISM VOTES OREGON PAGE TO USE THE "WRITE YOUR LEGISLATOR" FORM TO ALSO WRITE YOUR LEGISLATOR AND TO SIGN-UP FOR ACTION NOTICES.
Individual action is wonderful and sincerely appreciated, but in order for any grassroots movement to succeed, we must multiply our efforts and voices.
Please pass this message on to
- Family members,
- Co-workers,
- Neighbors,
- Friends, and
- People who work with your child.
Ask them to also please take the time to make these calls and send these emails on your child's, and so many Oregon children's behalf.
Our legislative session only meets EVERY OTHER YEAR, so this is our chance and THE YEAR to end discrimination against our children when it comes to insurance coverage and join 10 other states in the nation in giving them the access to medical care that they need!
Happy Dialing!
Autism Speaks Endorses Oregon Autism Insurance Reform Bill
Salem, OR (March 31, 2009) – Autism Speaks, the nation’s largest autism advocacy organization, today announced its support for House Bill 3000, the autism insurance reform bill. The legislation would require private health insurance companies to cover the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD) for individuals up to the age of 21. The maximum benefit would be $36,000 per year.
Sponsored in the Oregon State House by State Representative Peter Buckley (D- Ashland -5), HB 3000 includes coverage of Applied Behavior Analysis (ABA), an evidence-based, medically-necessary autism therapy.
“We applaud and thank Representative Buckley for his leadership on this issue of critical concern to thousands of Oregon families,” said Elizabeth Emken, Autism Speaks Vice President of Government Relations. “Autism Speaks joins Oregon’s autism community in calling on the legislature to pass HB 3000 and join the growing number of states that have ended healthcare discrimination against children with autism.”Most states do not require private insurance companies to cover even essential autism treatments and services. In the absence of coverage, families often pay as much as they can out-of-pocket for services that can cost upwards of $50,000 per year. In the process, many risk their homes and the educations of their unaffected children – essentially mortgaging their entire futures.
Eight states – Arizona, Florida, Louisiana, Illinois, Indiana, Pennsylvania, South Carolina and Texas -- have enacted autism insurance reform legislation. Several other state legislatures will vote on similar legislation during the current session.
(Blog author note: Two more states have passed autism insurance reform during this legislative season - New Mexico and Montana, bringing the national total to ten states with autism insurance reform law.)
To download a print copy of this release from Autism Votes
Summary Text of HB 3000 (intro. 3/3/09)
- Requires private health insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder
- Coverage will be provided to individuals under the age of 21
- Coverage under this bill is subject to an inflation adjusted maximum benefit of $36,000 annually
- Coverage of treatments will be provided when prescribed, provided, or ordered for an individual diagnosed with autism by a psychologist , a psychiatrist, a psychiatric nurse practitioner, a licensed clinical social worker, or an autism service provider or a person, entity or group that works under the direction of an autism service provider who determines the care to be medically necessary
- The bill defines "medically necessary" as "in accordance with the definition of medical necessity that is specified in the policy, certificate or contract for the health benefit plan and that applies uniformly to all covered services under the health benefit plan"
- The bill includes coverage of the following treatments: prescription drugs, blood level tests, psychiatric services, psychological services, speech therapy, language therapy, occupational therapy, physical therapy, and Applied Behavior Analysis (ABA)
- The bill applies only to fully-funded health plans governed by state
If passed, this bill will go into effect on July 1, 2011
NOTE: Matter within { + braces and plus signs + } in an amended section is new. Matter within
{ - braces and minus signs - } is existing law to be omitted. New sections are within { + braces and plus signs + } .
LC 2549
Be It Enacted by the People of the State of Oregon:
SECTION 1. ORS 743A.190 is amended to read:
743A.190. { - (1) A health benefit plan, as defined in ORS743.730, must cover for a child enrolled in the plan who is under18 years of age and who has been diagnosed with a pervasive developmental disorder all medical services, including rehabilitation services, that are medically necessary and areotherwise covered under the plan. - }
{ - (2) The coverage required under subsection (1) of this section, including rehabilitation services, may be made subject to other provisions of the health benefit plan that apply to covered services, including but not limited to: - }
{ - (a) Deductibles, copayments or coinsurance; - }
{ - (b) Prior authorization or utilization review requirements; or - }
{ - (c) Treatment limitations regarding the number of visits or the duration of treatment. - }
{ - (3) As used in this section: - }
{ - (a) 'Medically necessary' means in accordance with the definition of medical necessity that is specified in the policy,certificate or contract for the health benefit plan and that applies uniformly to all covered services under the health benefit plan. - }
{ - (b) 'Pervasive developmental disorder' means a neurological condition that includes Asperger's syndrome, autism,developmental delay, developmental disability or mental retardation. - }
{ - (c) 'Rehabilitation services' means physical therapy,occupational therapy or speech therapy services to restore or improve function. - }
{ - (4) The provisions of ORS 743A.001 do not apply to this section. - }
{ - (5) The definition of 'pervasive developmental disorder 'is not intended to apply to coverage required under ORS743A.168. - }
{ + (1) As used in this section:
(a) 'Applied behavior analysis' means:
(A) The design, implementation and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce socially significant improvement in human behavior or to prevent loss of attained skill or function; or
(B) The use of direct observation, measurement and functional analysis of the relationship between environment and behavior.
(b) 'Autism service provider' means an individual who:
(A)(i) Is certified as a behavior analyst by a behavior analyst certification organization approved by the Department of Consumer and Business Services; or
(ii) Is working under the supervision of a certified behavior analyst and is certified as an assistant behavior analyst by a behavior analyst certification organization approved by the department; or
(B)(i) Contracts with an insurer to provide autism services in the insured's service area;
(ii) Is a participating provider in the state medical assistance program; and
(iii) Agrees to accept the payment rates and other terms and conditions applicable to the insurer's other participating autism service providers.
(c) 'Autism spectrum disorder' means autistic disorder,Asperger's disorder, pervasive developmental disorder or any of the pervasive developmental disorders defined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, published by the American Psychiatric Association.
(d) 'Diagnostic assessment' means medically necessary evaluations or tests performed by a licensed psychologist,psychiatrist or psychiatric nurse practitioner within the past 12 months for the purpose of diagnosing autism spectrum disorder.
(2) A health benefit plan, as defined in ORS 743.730, must reimburse the costs of diagnostic assessment and treatment for autism spectrum disorder for enrollees who are under 21 years of age.
(3) Coverage is not required under this section unless the treatment is:
(a) For an autism spectrum disorder;
(b) Identified in a treatment plan that is:
(A) Developed by a licensed psychologist, psychiatrist or psychiatric nurse practitioner pursuant to a comprehensive evaluation or reevaluation; and
(B) Reviewed no less frequently than once every six months by the treating psychologist, psychiatrist or psychiatric nurse practitioner; and
(c) Prescribed, ordered or provided by:
(A) A psychologist;
(B) A psychiatrist;
(C) A psychiatric nurse practitioner;
(D) A licensed clinical social worker; or
(E) An autism service provider or a person, entity or group that works under the direction of an autism service provider.
(4) Treatments that must be covered under this section are:
(a) Prescription drugs;
(b) Blood level tests;
(c) Direct or consultation services of a psychiatrist or a psychologist;
(d) Applied behavior analysis; and
(e) Speech, language, occupational and physical therapies.
(5) Treatments covered under this section:
(a) May be limited to costs totaling $36,000 per year,increased annually, beginning January 1, 2012, by the percentage increase in the Portland-Salem Consumer Price Index for All Urban Consumers for All Items as reported by the United States Bureau of Labor Statistics;
(b) May not include limits on the number of visits; and
(c) May be subject to copayment, deductible and coinsurance provisions, and any other exclusions or limitations, but only to the same extent as other medical services covered by the plan.
(6)(a) An insurer must provide an internal review process for a denial of a request for diagnostic assessment or treatment of autism spectrum disorder for an enrollee under 21 years of age. A decision on review must be issued within 15 days from the request for review.
(b) A decision on review that is adverse to the insured may be appealed within 30 days to the Department of Consumer and Business Services as a contested case hearing under ORS chapter183.
(7) This section is exempt from ORS 743A.001. + }
SECTION 2. { + The Department of Consumer and Business Services shall submit a report to the appropriate interim committee of the Legislative Assembly by October 1, 2010, stating, for the calendar year beginning January 1, 2011, the number of children that are expected to benefit from the amendments to ORS 743A.190 by section 1 of this 2009 Act, the anticipated costs to insurers and the anticipated increase in thecost of insurance premiums. + }
SECTION 3. ORS 414.710 is amended to read:
414.710. The following services are available to persons eligible for services under ORS 414.025, 414.036, 414.042,414.065 and 414.705 to 414.750 but such services are not subject to ORS 414.720:
(1) Nursing facilities and home- and community-based waivered services funded through the Department of Human Services;
(2) Medical assistance to eligible persons who receive assistance under ORS 411.706 or to children described in ORS414.025 (2)(f), (i), (j), (k) and (m), 418.001 to 418.034,418.189 to 418.970 and 657A.020 to 657A.460;
(3) Institutional, home- and community-based waivered services or community mental health program care for persons with mental retardation, developmental disabilities or severe mental illness and for the treatment of alcohol and drug dependent persons; { - and - }
(4) Services to children who are wards of the Department of Human Services by order of the juvenile court and services to children and families for health care or mental health care through the department { - . - } { + ; and
(5) Diagnostic assessment and treatment of autism spectrum disorder as described in ORS 743A.190, for individuals under 21years of age. + }
SECTION 4. { + (1) The amendments to ORS 414.710 and 743A.190by sections 1 and 3 of this 2009 Act become operative July 1,2011.
(2) The amendments to ORS 743A.190 by section 1 of this 2009 Act apply to health benefit plans, health care service contracts and multiple employer welfare arrangements offered or renewed on or after July 1, 2011. + }
