Monday, December 31, 2007
1. Map of State Autism Insurance Laws
2. Texas Governor Signs Autism Insurance Bill
3. 17 States Require Some Insurance Coverage for Autism, Recent Survey Finds
4. Autism Schools Map Project
5. Colorado Passes Early Intervention Plan that Applies to Autism
6. New Florida Autism Charter School Opens in Tampa
7. MTV's "True Life" Features Teens with Autism
8. Texas Lawmakers Pass Bill to Cover Some Children's Autism Services
9. Wisconsin Governor Calls for Autism Coverage
10. Nick News Focuses on Autism
The top five "Labels" readers researched on Autism Bulletin in 2007:
2. Autism Services
4. Health Insurance
Source: Google Analytics
Sunday, December 30, 2007
Autism Bulletin's 2007 Advocates of the Year list includes the people and organizations behind those big events. It also includes other people and groups who made a difference—including a number of individuals nominated by readers. Thanks to everyone who shared their thoughts on these individuals' important efforts. Here are the picks for Autism Bulletin's advocates of the year:
The American Academy of Pediatrics.
It was big news in the fall when the American Academy of Pediatrics issued a call for doctors across the United States to offer routine diagnostic screenings for autism spectrum disorders. The group that has 60,000 members also published papers to educate its members about autism and what treatments offer important help for people on the spectrum, and a special package for doctors to educate themselves about ASD. The move is important as an awareness campaign, but its impact could have larger repercussions as it firmly legitimizes therapies such as Applied Behavior Analysis (ABA) which some insurers, school officials and medical professionals considered "experimental" and provides concrete baselines for service levels (25 hours per week, 12 months per year) for such therapies.
The South Carolina Parents Who Won "Ryan's Law."
There were tears, hugs and celebrations in the lobby of the South Carolina capitol building last June, and they were justified: the state Legislature had just overridden the governor's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. Not only did these parents and other advocates led by Lorri Unumb (Ryan's mom) and Lisa Rollins work tirelessly to educate state lawmakers about the need—and relatively modest costs—for such coverage. They have organized advocates from around the nation to share strategies and tactics to work for similar legislation in others states. We saw legislation pass in Texas and have been watching as advocates working in Michigan, Arizona, California and Florida, among other states, seek to follow South Carolina's lead.
Sandee and Jeff Winkelman, Who Argued for Parents' Rights (and Won).
The parents of Jacob Winkelman of Parma, Ohio, fought and won the right for parents across the nation to argue on behalf of their disabled children in federal court. In a 7-2 decision in May, the U.S. Supreme Court ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court—without a lawyer if necessary—so they can advocate for their child to receive a free and appropriate education. Other parents of autistic children understood the Winkelman's plight: when you have to pay tens of thousands of dollars for autism-related services and schooling, who has the money for a lawyer to fight for services in court? The Supreme Court said they didn't have to be lawyers to fight the good fight.
Senator Hillary Rodham Clinton.
Clinton, the New York Senator who is in a dogfight for the Democratic presidential nomination, this year demonstrated a willingness to be a front-and-center advocate among policy makers in Washington D.C. for people with autism and their families. In March, Clinton and Sen. Wayne Allard, a Colorado Republican, filed legislation that would expand autism services and research. Then this fall, on the campaign trail, Clinton made the loudest call for increased spending on research, education and support services for people with autism, pledging to spend $700 million per year if elected. Yes, it's that time of the political season when we hear lots of promises. And other candidates (only Democrats so far) have noted the need to do something more for people with autism. But no one else has made such pointed, specific proposals for autism. At least not yet.
The Asperger's Association of New England.
It was almost a year ago that a murderous stabbing in a Lincoln-Sudbury High School bathroom in the Boston suburbs shocked the region where I live. It turned out that the 16-year-old who allegedly killed a fellow student has an Asperger's diagnosis, a fact which his lawyer has made central to his defense. The Asperger's Association of New England took it upon itself to invite the public to discuss the diagnosis and assert that physical violence is not at all typical of people with the condition. The group's leaders fielded many media calls and sought to enlighten the public and spread awareness about Asperger's. A footnote to the tragedy: local media have reported the special education program which the Asperger's student attended is no longer hosted at the high school.
Angela Mouzakitis, BCBA.
ABA needs more voices like that of Angela Mouzakitis. Mouzakitis publishes the blog Applied Behavior Analysis: Current Topics, and is a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College. Her essays are always professional, sometimes technical and academic—but throughout she conveys a passion for helping kids on the autism spectrum, for creating new educators who share her passion. Along the way she demonstrates an open-minded approach to practitioners of other kinds of therapies.
Parents and Siblings Who Teach Others About Autism
Karra Barber is the mother of a teenager with Asperger's Syndrome who has brought energy to her advocacy work in California. Her website has a useful list of Asperger's support programs in California, among other resources. A reader writes that she was a leader in the founding of a summer camp for film-making for kids who have trouble communicating at Saint Mary's College in Moraga, Calif.
Morton Ann Gernsbacher, a psychology professor at the University of Wisconsin at Madison and past president of the Association for Psychological Science, has made understanding autism one of her research priorities since her son received an autism spectrum disorder diagnosis. An Autism Bulletin reader notes that Gernsbacher's work to make therapists aware about autism and to battle prejudicial perceptions of people with ASD is essential.
Renee Henderson, a Philadelphia-area mother and advocate, has established a group called Autism Sharing and Parenting, which organizes support groups and parent workshops in Philadelphia and Montgomery Counties in Pennsylvania. A reader writes that Renee, who started the group three years ago, spends many hours helping families make daily picture schedules using Boardmaker, and providing a helpful and supportive ear, and adds: "She is making a difference by teaching parents how to become better advocates for their children, by providing parents with the information, tools and resources needed to improve their quality of life."
Nicholas Lombardi, who is now 12, was in the mall with his younger brother Joey and his mom when Joey took off his shoes and started running. "As the people stared I found my self very angry," Nicholas writes in an essay published on the Autism Speaks website. "Not at him, not really at them, but maybe at autism. I wished there could be a way… to have people understand. A voice." Nicholas decided to create a button for his brother and other autistic kids to wear that says "I'm not misbehaving, I have autism. Please be understanding." Sales of the button in English and Spanish, has raised more than $8,000 so far at Autism Speaks online store.
Recognizing Continued Advocacy Efforts
As noted in the 2006 list of advocates, there are a number of organizations who deserve credit for their ongoing efforts on behalf of people with autism and their families. These include advocacy organizations like the Autism Society of America (which this year announced a partnership with Easter Seals to improve access to services), and Autism Speaks (which merged with Cure Autism Now). Though both groups are large and as such, have their critics and controversies, they are amassing the resources needed to make a national impact.
Others who have continued and expanded their worthy efforts include:
* The center builders, such as The Friends of Children with Special Needs in Fremont, Calif. and the Autism Center of Pittsburgh, an outgrowth of the advocacy and support work at AutismLink.
* Medical researchers. The projects funded by public and private sources, both in the United States and abroad, are aimed at new understanding of autism's potential causes and treatments. See "Large Children's Health Study Cites Autism as One of Key Target Areas" and "British Researchers Unveil Brain Imaging Center" as two examples.
* Educators. This year, Autism Bulletin started an autism schools map project to build a directory for parents seeking options. The map is filling up with examples of organizations committed to helping kids, from the Claremont Autism Center in California to the Connecticut Center for Child Development to the Florida Autism Center for Excellence (FACE) School in Tampa.
Others Worth Noting
* Ivan Corea and others at the National Autistic Society in the United Kingdom, whose advocacy and awareness efforts included a meeting with former Prime Minister Tony Blair.
* Writers who shared their experiences as parents, including Roy Richard Grinker and Portia Iverson. And Tim Page, who wrote movingly of growing up with Asperger's.
* The British author Nick Hornby, who uses his success to sustain the TreeHouse school in London he helped to found, and even from time to time, uses his book reviews in The Believer to spread awareness, though his own experiences, when he writes about autism.
* IEP Advocates like Barbara Ball of Newton, Mass., upon whom parents rely for advice and support.
Thanks to all of these individuals and organizations for their efforts.
Friday, December 28, 2007
What should the nation prioritize to advance research on the treatment of autism spectrum disorders (ASD)? On the diagnosis of autism? Risk factors for autism? The biology autism? Or other areas?
The National Institute of Mental Health has issued a request for information to members of the autism community asking for information on what community members believe should be the priorities for autism research.
The deadline for submitting information is January 4, 2008. The Interagency Autism Coordinating Committee established by the Combating Autism Act of 2006 will use the input to develop a strategic plan. The request is aimed at people with autism spectrum disorders, their families, advocates, scientists health professionals, therapists, educators, state and local programs for ASD, and the general public.
You can read the request for information here. An excerpt from the document explains:
The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.
To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:
- Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.
- Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.
- Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.
- Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.
The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.
Send your ideas to the Interagency Autism Coordinating Committee at firstname.lastname@example.org. Please read the guidelines before doing so, such as the need to mark proprietary information and the requested two-page limit for comments.
* Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health
Thursday, December 27, 2007
The group's leaders Bob and Suzanne Wright said they plan to meet with Florida Governor Charlie Crist and legislative leaders in what they hope will be a bipartisan effort to pass legislation requiring health insurers to cover autism-related therapies like Applied Behavior Analysis (ABA) "and other structured behavioral therapies, which are the most effective forms of treatment and have the best outcomes, both in human costs and in long-term economic benefits."
"It's time for insurance companies to step up and assume some of the financial burden now shouldered by families and school districts," said Bob Wright. "The autism community is mobilized and determined to go state-by-state state and knock on every legislator's door until these unreasonable insurance laws are changed. It's time to remove these barriers to care."
The announcement cites the fact that so far, Indiana, South Carolina and Texas are the only states which require insurers to cover autism-related services and asserts: "Nationwide, few private insurance companies or other employee benefit plans cover Applied Behavior Analysis and other behavioral therapies. In fact, most insurance companies designate autism as a diagnostic exclusion, meaning that no autism-specific services are covered, even those that would be used to treat other conditions."
As part of this advocacy effort, Autism Speaks posted a paper citing arguments in favor of autism insurance coverage. You can see the PDF document here. It's the same document that advocates in Arizona published on their website. For more on that, see "Arizona Advocates Prepare for Autism Insurance Push."
The choice of these big states is interesting as we enter a presidential election year in which health care is an important issue. So far in the campaign autism has been mentioned briefly, if notably, by Democrat Hillary Clinton. (See "Autism Issue Makes Ripple in Presidential Race.") Autism Bulletin readers responding to an online poll posted Dec. 17 identified autism services as the most important factor in their presidential choice.
It's an election year at the state level, too, and that's where the autism insurance battles will be fought. Autism Speaks said it plans to continue advocating for passage of a bill in Pennsylvania that was pending earlier in 2007 and faced opposition from business lobbyists.
Autism Speaks is one of the nation's biggest autism advocacy groups, and funds research and education initiatives as well as advocacy efforts. It was founded by the Wrights who have an autistic grandson. Bob Wright is the former CEO of NBC.
Saturday, December 22, 2007
PatriciaEBauer.com is the blog and website providing news and commentary on disability issues authored by Patricia E. Bauer, a veteran journalist and editor. She notes on her website bio that she and her husband helped to establish the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia.
Note for e-mail subscribers: other resources in the sidebar include autism news via GoogleNews, links to reports and books I have found useful, recent court decisions involving special education law, other resources and some how-to articles such as how to plan a community outing.
Wednesday, December 19, 2007
After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavioral Analysis
You can read more background in this Autism Bulletin story from December 9: Colorado Family Wins Insurance for Autism Services. One of the points the arbitrator made in her decision was that "Anthem erroneously equates ABA therapy with Lovaas therapy—an approach which has received considerable justifiable scientific criticism. ABA therapy is based upon incidental teaching and pivotal response training, which Dr. Strain testified is the standard of care when dealing with autistic children."
That quote puzzled me because I had read Ole Ivar Lovaas, now a professor emeritus at University of California at Los Angeles, was one of the founders of ABA. So I wrote to the Los Angeles-based Lovaas Institute, which provides autism services using Lovaas' method, and asked them to help me understand more about them and what this arbitrator could have been talking about.
Below is the response I received from Scott Cross, clinical director, and Vincent J. LaMarca, of the institute's human resources department. Both cite their credentials as board-certified behavior analysts, or BCBAs.
On behalf of Dr. Lovaas and the Lovaas Institute, thank you for your inquiry. I can understand from the blog posting why you would have questions about the relationship between “Lovaas therapy” and ABA.
First, you are correct that in laymen’s terms “Lovaas therapy” is “a type of ABA.” In fact, we are more likely to refer to our program as the “Lovaas Model of Applied Behavior Analysis.” We provide behavioral treatment, based on the principles of applied behavior analysis, researched under the direction of Dr. Lovaas, and replicated by other professionals at other sites throughout the world.Second, the quote from the arbitrator is somewhat curious. On one hand, it states “Lovaas therapy…has received considerable justifiable scientific criticism.” On the other hand, it promotes applied behavior analysis (ABA) by mentioning the Surgeon General report and the National Institute of Mental Health’s publication. This is curious because, after stating, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior,” the Surgeon General report’s next sentence states, “A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993).” The National Institute of Mental Health’s publication also mentions Dr. Lovaas. Immediately after citing the Surgeon General report, it states that the work of Dr. Lovaas “laid a foundation for other educators and researchers.”
It’s possible that what is really meant in the arbitrator’s decision is that Anthem was wrong in making a decision on applied behavior analysis by only consulting studies associated with the Lovaas Model of Applied Behavior Analysis. Applied behavior analysis is a scientific discipline with a wealth of research. While Dr. Lovaas is honored to have contributed to that research, it is but the tip of the iceberg. One need only peruse the Journal of Applied Behavior Analysis to understand why a claim that ABA therapy is “investigational and experimental” is incorrect. There are a multitude of research articles demonstrating the efficacy of applied behavior analysis in teaching new skills to children, adolescents, and adults with autism.
Finally, it is somewhat disconcerting that the testimony, as depicted in the arbitrator’s decision, appears not only to place the Lovaas Model and applied behavior analysis in opposition (as it shouldn’t), but also to downplay some of the Lovaas Model’s treatment procedures in early intervention. It is an enormous oversight that discrete trial teaching (while not the only ABA instructional strategy) is left out of the testimony as an important component of an ABA program. Consider that all of the multi-site replications have been initially discrete trial based and have explicitly stated so in their method sections.
Behavioral treatment for children with autism is currently undergoing a lot of branding, with Verbal Behavior, the Lovaas Model, and Pivotal Response Teaching as the three names used most frequently. To what extent this is helpful or harmful to treatment is an important discussion in which we at the Lovaas Institute are currently taking part with other professionals. We would agree that there is a need for researchers to clarify the similarities and differences of different approaches as well as to study which approaches are more helpful for which children.
In the meantime, I would point out that while the Lovaas Model of Applied Behavior Analysis may have received scientific criticism, the National Academy of Science report (mentioned by Dr. Strain) also states that the Lovaas Model (a.k.a. Young Autism Project) “has generated the most rigorously controlled early intervention research published to date.”
And since that publication in 2001, two replication studies of the Lovaas Model have been published by independent authors, again demonstrating the effectiveness of our approach (Sallows & Graupner, 2005 and Cohen et al., 2006).
Sallows, Glen O. & Graupner, Tamlynn D. (2005). Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors. American Journal on Mental Retardation, 110 (6), 417-438.
Cohen, Howard, Amerine-Dickens, Mila, Smith, Tristram. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics, 27 (2), 145-155.
Sincerely,Scott Cross, PhD, BCBAVincent J. LaMarca, BCBA
Monday, December 17, 2007
With the Iowa caucuses and New Hampshire primary just weeks away, the question came up at a gathering I attended over the weekend: how important is a presidential candidate's stance on autism services to your vote?
The consensus I heard among four voters at the table was that the issue has to be on the candidate's list of action items. Last month, Sen. Hillary Rodham Clinton of New York made autism an issue in her campaign by pledging to fund $700 million per year to expand research, diagnostic efforts and services for both children and adults with autism spectrum disorders. (See "Autism Issue Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year." A number of Democrats—Barack Obama, John Edwards, Christopher Dodd and Bill Richardson—mention support for autism services in their record. I couldn't locate any recent notes online for any of the Republican candidates.)
With so much going on in the country and world, it seems difficult at this stage of the presidential race to isolate autism as a campaign issue—even for those of us for whom it is a constant, daily presence. So I'm asking you, Autism Bulletin readers, to weigh in. I've created a poll below, where you can click on your choice for the most important issue. If you don't see your issue listed, you can post your comment below. E-mail subscribers can go here to see the poll.
Thursday, December 13, 2007
Arizona Advocates Preparing for Autism Insurance Push; Group Publishes Autism Speaks Report on Coverage Costs, Benefits
Advocates have set up a website, AZAutismInsurance.org, as a home page for news and information about the effort. In addition to keeping Arizona advocates up to date, the group's website hosts an important document that advocates around the country could find useful.
The 23-page document, "Arguments in Support of Private Insurance Coverage of Autism-Related Services," prepared by the national advocacy group Autism Speaks in October, lays out in clear language eight reasons why a state like Arizona should pass laws that mandate insurance coverage of autism services.
The report includes cost estimates based on studies in other states—a few dollars a month added to the average health insurance policy—and benefits: access to services now out of reach of many affected children. The report explains how existing services and government programs, including Medicaid, fall short of what's needed for a growing population of those diagnosed with autism spectrum disorders. And it brings up an argument heard before: it pays to provide services to children, to help them grow and develop, so that it costs less to provide supports later in life.
The following is a rundown of the arguments, excerpted from the beginning of the report:
Argument 1: Mandated private health insurance coverage will provide services that are desperately needed by children with autism, who have greater health care needs than children without autism.
Argument 2: Treatments for autism are difficult to access, often inadequate, and frequently delayed. Denied coverage by private group health insurance companies, parents are often forced either to pay out-of-pocket or forego the treatments their children need.
Argument 3: Mandated private insurance coverage will bring effective autism services within the reach of children who need them. The efficacy of Applied Behavior Analysis (ABA), the centerpiece of this legislative mandate’s benefits, has been established repeatedly.
Argument 4: Government and scientific organizations have endorsed Applied Behavior Analysis (ABA) and other structured behavioral therapies.
Argument 5: To combat the difficulty many families face in accessing Applied Behavior Analysis (ABA) and other structured behavioral treatments through public insurance, three states have passed autism insurance mandates that specifically require private insurance companies to provide coverage of these therapies, thus creating a public-private partnership for the provision of care.
Argument 6: The costs of this insurance reform are small and will have very little impact on the cost of health insurance premiums for the individual consumer.
Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.
Argument 8: Without passage of legislation requiring private health insurance coverage for autism, the costs associated with autism will continue not only to affect families, but will have far reaching social effects as well.
It will be interesting to see how the discussion plays out in Phoenix. A cursory check of the Arizona State Legislature's website indicates that there are no current bills filed relating to autism yet; I will look to update readers when I learn more information.
Also see from Autism Bulletin's archives:
* Michigan to Hold Hearing on Autism Insurance Legislation
* Articles related to health insurance
Wednesday, December 12, 2007
The wording of the legislation is below; what's interesting to note is the specific items covered—speech, OT, ABA, PT and early intervention services. The bill does not mention age restrictions as in states like South Carolina and Texas.
"More and more children across our state are being diagnosed with autism, leaving an increasing number of Michigan families struggling to keep up with the high costs of treatment," Angerer said in a statement. "Proper screening and treatment of autism is crucial to a child's development, and experts agree that early diagnosis and treatment is vital to increasing the chances that a child will reach their full potential. Excluding autism from coverage is not only arbitrary and unfair – it sets back efforts to understand and treat this disorder, which threatens to increase health care costs for everyone down the road."
Angerer is the lead sponsor of two house bills, No. 5529 and No. 5527, each of which calls for coverage of autism-related services. The bills have parallel Senate versions (Nos. 784 and 785) sponsored by Sen. Tupac Hunter, a Detroit Democrat (again, noted by Autism Insurance in Michigan.)
Language in the Michigan Bills
Here's specifics on what the House bills cover. Bill No. 5529 states that authorized hospitals, medical facilities, health maintenance plans:
shall provide coverage for the treatment of autism spectrum disorder, including, but not limited to, coverage for therapeutic evaluations and interventions, speech therapy, intensive early intervention, applied behavioral analysis, and Lovaas behavioral therapy.
Coverage for autism spectrum disorder under this section is subject to the same terms and conditions that the insurer or health maintenance organization applies to the treatment of other disorders. However, an insurer or health maintenance organization may confirm a diagnosis or review the appropriateness of a specific treatment plan in order to insure that coverage under this section is limited to diagnostic and treatment services.
As used in this section, "autism spectrum disorder" means a neurobiological condition that includes autism Asperger Syndrome and Rett's Syndrome.
The other bill, No. 5527 has the exact same wording regarding coverage of services, and what autism means, except it applies to "a health care corporation group or nongroup"; in other words, other kinds of health insurance organizations and health care organizations.
Also see in Autism Bulletin archives:
* Past coverage of health insurance
Also, an updated version of the Autism Insurance Map is below (e-mail subscribers, click here if you have trouble seeing it):
Sunday, December 09, 2007
Autism services advocates are hailing the decision in the case of Jill and Stephen Tappert who appealed several coverage denials for ABA services for their young daughter Abby by Anthem Blue Cross Blue Shield of Denver, as an important victory.
But a spokeswoman for Anthem told Denver ABC TV affiliate KMGH Channel 7 the insurance company believed Tappert case was a single instance and was not precedent-setting: "This decision is not a broad-based declaration that ABA therapy is 'medically necessary' in all cases. To what extent this type of therapy should be covered...should be made by legislators and/or the division of insurance."
It's not surprising for the insurer to assert a narrow reading of the case. However, families around the country could study the arbitrator's decision which clearly states that ABA is a mainstream, research-based approach for early intervention services for young children with an autism spectrum disorder diagnosis—and rejecting the insurer's arguments that it's not an effective medical treatment.
The case also raises questions for other insurance companies and whether they could use this decision to revise their coverage policies or the administrative rules that govern them.
One thing the Anthem spokeswoman hit upon was a legislative trend. The question about health insurance coverage for autism services such as ABA has, in fact, been a theme of legislative debates around the country as the issue makes its way through state-level debates. Reading different bills, some legislators leave the wording vague as to what health insurers should cover; new laws have passed in South Carolina, which calls for coverage of behavioral therapy, and Texas which calls for coverage of ABA. (Insurance industry and business industry lobbyists, meanwhile, have argued against any additional coverage because of the cost, in states like Pennsylvania.)
The Arbitrator's Findings
The arbitrator's decision document (dated Nov. 20 and issued by Judicial Arbiter Group) which Autism Bulletin received from advocates, provides a window into the health insurance company's policy on autism coverage. Anthem rejected coverage on the grounds that ABA services were not provided in a doctor's office, that ABA was not a medically valid treatment.
Some of Anthem's testimony appears to have been undercut by the fact that administrators and doctors with no experience treating autism cases were making decisions about whether ABA should be covered. Even so, the arbitrator's decision rejects Anthem's arguments and cites the testimony of Philip Strain, an early intervention autism expert and professor of educational psychology at University of Colorado at Denver states:
In his criticism of the Anthem policy, Dr. Strain points out that Anthem erroneously equates ABA therapy with Lovaas therapy—an approach which has received considerable justifiable scientific criticism. ABA therapy is based upon incidental teaching and pivotal response training, which Dr. Strain testified is the standard of care when dealing with autistic children.
According to Dr. Strain, instead of being investigational and experimental, ABA therapy reduces problem behaviors 80 to 90 percent and studies have replicated these results repeatedly.
Finally, Dr. Strain testified that the ABA therapy received by Abby was endorsed by the National Academy of Sciences—the recognized authority in the United States for resolving scientific disputes. Dr. Strain's opinions were echoed b Dr. Huckabee, Abby's treater for autism. Both Dr. Strain's and Huckabee's opinions are supported by the National Institute of Mental Health's publication on Autism Spectrum Disorders: "Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states: 'Thirty years of research demonstrated the efficiency of applied behavior methods in reducing inappropriate behavior and increasing social behavior.'"
Remember the American Academy of Pediatrics
The arbitrator's decision in this Colorado also case points out the importance of the recently launched autism awareness campaign at the American Academy of Pediatrics. The full-on effort to educate pediatricians about autism and early interventions to address the condition is likely to lead to more medical prescriptions for therapies such as ABA for young children who are diagnosed with autism spectrum disorders. It will also make it more difficult for health insurers to pledge ignorance about the legitimacy of such approaches.
Also see in the Autism Bulletin archives:
American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents
Thursday, December 06, 2007
First, a bit of background. About one year ago, FACE received seed money ($700,000) from the state of Florida to cover starting costs. Students at the school are eligible for partial tuition grants from a state government "school choice" program for children with disabilities. The school is pursuing a program based on the principles of Applied Behavior Analysis (ABA), which means staff seek to manage the behaviors of children to help them learn, to encourage positive behaviors that lead to growth and development and to discourage behaviors that are obstacles to learning.
In addition, the for-profit Educational Services of America, based in Nashville, is responsible for managing the nonprofit FACE school. With such a model, with a rising demand nationally for autism services and educational programs, it's no wonder that there has been a great deal of interest among Autism Bulletin readers in the school, and the specifics of how it's set up. What follows below is the full text of questions I had, plus those collected from readers, and the answers which the school administration sent on November 29 through Lovell Communications, Educational Services of America's public relations agency.
- What kind of training do teachers receive?
Our teachers receive specific, extensive training that begins before they enter the classroom and continues throughout the school year. Topics include Applied Behavior Analysis and specific methodologies for working with students with autism, such as discrete trial, structured teaching, social skill training and other tools to develop individual education and behavior support plans.
Our school calendar requires an additional 150 hours of formal training, which is supplemented by ongoing coaching and support from the clinical program director and from teachers who mentor their colleagues. Teachers are trained to conduct individual assessments, write lesson plans and collect and analyze data so they can make objective determinations about whether a student is advancing academically, behaviorally and socially. In addition, teachers are required to obtain an Autism Endorsement from an accredited university.
- What kind of training do one-on-one aides receive?
We staff classrooms to provide the greatest amount of support to promote students’ independence, enhance generalization and encourage relationships with their peers and, therefore, we do not provide one-on-one aides. However, all aides receive the same extensive, specific training the teachers receive.
- What direct supervision do teachers and aides receive -- how often, how much time per week and from whom?
Teachers and aides receive a high degree of support and supervision. Several teachers serve as mentors to their colleagues and the mentors hold weekly supervision meetings with classroom teachers to provide ongoing training, support and guidance. The clinical program director meets with each mentor teacher weekly. And the clinical director/behavior specialist and school director review each teacher’s weekly lesson plan. Assistants receive formal supervision from the classroom teachers once a week and on-the-job coaching, support and training all day every day.
- What kind of certification of education and training do you require of staff?
Our teachers are required to meet all state standards plus the standards of the Florida Autism Center of Excellence. Our school calendar requires an additional 150 hours of formal training, which is supplemented by ongoing coaching and support every day. In addition, teachers are required to obtain an Autism Endorsement from an accredited university.
- How many staff members have advanced training in applied behavior analysis (ABA)?
- Who is responsible for individual behavior plans for students? If an aide has a problem, where does she go for help?
The teacher, the mentor teacher and the clinical program director work collaboratively to develop students’ individual positive behavior intervention plans. If an aide has a problem, he or she goes first to the classroom teacher, then to the mentor teacher, then to the program director.
- How often does your staff visit with students at home to generalize lessons from school, and work on home-based skills?
Our mission is to educate students in a school environment. Therefore, our staff does not go to students’ homes – rather, we communicate with every parent every day and we invite parents to schedule visits to FACE. In addition, we will soon offer parents additional support they can use at home. Our plan called for us to open FACE in Fall 2007 and offer parent and family initiatives such as training, support groups and a parent-teacher association in Spring 2008 – and we’re on track to do that.
- What kind of training and education do supervisors have?
One supervisor has a bachelor’s degree in special education, a master’s degree in ABA and sat for the certification exam in November. Another has a bachelor’s degree in business management, a master’s in education and is working toward a doctoral degree in educational leadership. Our lead teachers each have bachelor’s degrees in psychology and seven years of experience working with children with autism. One of our lead teachers has a certification in Exceptional Student Education for students in grades K-12. The executive director of FACE has a bachelor’s degree in social science, a master’s in mental health counseling and is completing a doctoral program in adolescent counseling. He is a board-certified professional counselor and a licensed mental health counselor whose specialty is children and adolescents.
- How many board certified behavior analysts does FACE employ on site?
ESA has three board-certified behavior analysts, including two who provide direct, ongoing support to FACE and are frequently on campus. The clinical program director, whose office is on campus, has a master’s degree in ABA and sat for the certification exam this month.
- What is the student-teacher ratio?
We individualize our curriculum and behavior intervention plans for each student, so our student-teacher ratio is based on students’ needs. There is one teacher and one aide for every eight children at the FACE Dale Mabry campus, whose students require more intensive interventions. There is one teacher and one aide for every 15 students at the FACE Chelsea campus, whose students require less intensive interventions.
- How many students have a one-on-one aide, compared to the total enrollment?
We staff classrooms to provide the greatest amount of support to promote independence, enhance generalization and encourage relationships with peers and, therefore, we do not have one-on-one aides.
- The autism spectrum can present as a broad array of needs, from severe communications challenges, to highly verbal children who have a diagnosis of Asperger's Syndrome. Do you serve them all? How?
Our mission is to provide a continuum of education and behavioral services to students anywhere on the spectrum. We do this by providing individualized curriculum and behavior intervention plans to meet the specific needs of each student. Students at our Dale Mabry campus require more intensive interventions; students at our Chelsea campus require less intensive interventions. Class sizes are small and students are grouped by according to their age and then by their level of ability. Our small class size, low student-teacher ratio, highly individualized instruction and two campuses enable us to serve students no matter where they are on the spectrum.
- What kind of parent training do you offer? What do you do to help parents learn about ABA?
We will begin offering parents structured training and support soon. Since FACE opened in the Fall of 2007, we have worked closely with our parents and shared our methodologies and philosophies with them. Our plan called for us to open FACE in Fall 2007 and offer parent and family initiatives such as training, and network and support groups in Spring 2008 – and we’re on track to do that. We can help parents learn about many aspects of ABA, such as positive behavior management, that will help parents and students in their daily lives at home.
- What other services are available for families from the school?
FACE has partnered with the Boys and Girls Club of Tampa, in part due to a federal grant to establish after school programs for children with special needs. The goal is to provide a comprehensive after school program integrating children at all levels of functioning with a comprehensive academic, social and physical program model. As part of the program, FACE students are teamed with typically developing students from other schools who serve as mentors one day a week. This provides FACE students an opportunity to interact and develop friendships with students who attend other schools.
- Do you offer any social worker support from the school?
Through our partnership with the Hillsborough County School District, every student and family has access to social work support.
- What do you say to those who are skeptical that a for-profit parent company can run an effective non-profit organization like FACE? How do you balance the need to maximize revenues, minimize costs and still provide a quality program?
Our mission is to help students with special needs develop academic, behavioral and social skills that will enable them to lead more independent lives. Being a for-profit organization allows us to do this effectively, efficiently and with a high level of quality. Organizations, whether they are non-profit or for-profit, have many of the same fiscal realities – they have income and they have expenses. But there are some important differences. Because we do not have to raise money through charitable donations, we have the resources to focus strictly on helping children. We also feel tremendous accountability. We remain in business because our programs are successful and our families are happy with the results their children achieve.
As always, you are welcome to leave comments about this exchange with the FACE school. No doubt the FACE administration will see them. In addition, I want to publicly thank the school's administrators for participating in this Q&A.
For more background, also see from Autism Bulletin's archives:
New Florida Autism Charter School Opens in Tampa
Florida Awards $700,000 Grant to Start Tampa Autism Center
Autism Schools Map Project
Sunday, December 02, 2007
The committee's goal is to make sure government agencies are sharing information so they can coordinate their respective efforts on various autism-related programs. You can read Leavitt's full announcement by clicking here.
While the law calls for the director of the Centers for Disease Control to be appointed to this panel, Leavitt instead appointed another CDC official to represent the agency head, Julie Gerberding. (You can read the text of the Combating Autism Act here in a PDF file. For those of you interested in the specific section of the law pertaining to this committee, read to the end of this post.)
The committee chair is Thomas R. Insel, M.D., director of National Institutes for Mental Health. "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism," Dr. Insel said in a statement.
Four Parents, One Autistic Adult Appointed to the Committee
The law calls for the committee to have one-third of its members come from the public at large, and at least one person with autism, one parent and one member of the autism advocacy organization. Levitt's six choices to fill these roles are below, with notes from the government's press release and some associated website links:
Stephen Shore, Ed.D., the executive director of Autism Spectrum Disorder Consulting. See his website at www.autismasperger.net. Shore has an autism spectrum disorder diagnosis. He is an education consultant who is an expert "on adult issues pertinent to education, relationships, employment, advocacy, and disclosure." Shore serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and is on the board of directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation.
Parent Lee Grossman, the president and CEO of Autism Society of America (ASA), a leading advocacy organization based near Washington D.C. He is the parent of a young adult son with autism. Mr. Grossman is also the chair of the ASA Foundation and a member of the ASA Environmental Health Advisory Board.
Parent Christine McKee is a lawyer who has developed and manages an in-home therapy for her autistic child. She participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.
Parent Lyn Redwood is co-founder and president of the advocacy group Coalition for Safe Minds. The coalition is a private nonprofit organization "founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines." She is a nurse practitioner who has 25 years of experience, and began her advocacy efforts for autism research after her son was diagnosed with pervasive development disorder in 1999."
Parent and sibling Alison Tepper Singer is executive vice president of Autism Speaks and is a member of the board of directors. Prior to joining Autism Speaks, Ms. Singer spent 14 years at CNBC and NBC where she served in several positions. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.
Yvette Janvier, M.D., is the medical director for Children's Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.
Government Officials on Committee
Secretary Leavitt appointed 13 government officials and researchers to this committee. They are:
Duane Alexander, M.D., director of the National Institute of Child Health and Human Development at NIH. The Institute supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.
James Battey, M.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH. The Institute supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.
Ellen Blackwell is a social worker and health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.
Margaret Giannini, M.D., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities. She is also a member of the Institute of Medicine of the National Academy of Sciences and fellow of the American Academy of Pediatrics.
Gail Houle, is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.
Larke Huang is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.
Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH. The Institute's mission is to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior.
Story Landis is director of the National Institute of Neurological Disorders and Stroke at NIH. The Institute's focus is directed toward reducing the burden of neurological disease through research on the normal and diseased nervous system.
Cindy Lawler is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH. The Branch plans, directs, and evaluates the Institute's grant program that supports research and research training in environmental health.
Patricia Morrissey is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families, which seeks to improve services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.
Edwin Trevathan, M.D., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is focused on identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.
Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau, which seeks to improve the health of mothers, children, and families, particularly those who are poor or lack access to care.
Elias Zerhouni, M.D., is director of the National Institutes of Health. A world renowned leader in the field of radiology and medicine, Dr. Zerhouni has spent his career providing clinical, scientific, and administrative leadership. He leads the nation's medical research agency and oversees the NIH's 27 Institutes and Centers with more than 18,000 employees.
Notes on This Panel from the Combating Autism Act
The law calls for the committee to meet at least twice a year, in public. Here's what the law says about its goals:
In carrying out its duties under this section, the Committee shall—
(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;
(2) monitor Federal activities with respect to autism spectrum disorder;
(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);
(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;
(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and
(6) submit to the Congress such strategic plan and any updates to such plan.
Related Stories on Autism Bulletin:
CDC Director Cites Autism as Urgent Concern
Bush Signs Combating Autism Act
National Institutes of Health Reorganizes Autism Research Program
Federal Research Grants Shows Intensified Effort to Find Autism Clues, Treatments, NIH Says