Saturday, February 23, 2008

More on Colorado Autism Insurance Case: Q&A with Tappert Family's Lawyer

R. Craig Ewing is managing partner at Ewing & Ewing, the Englewood, Colorado law firm which represented the Tappert family, who recently won an arbitration case for their health insurer to cover autism-related services for their young daughter Abby. Mr. Ewing last month agreed to respond to some questions I sent him via e-mail.

You can read more about the case in this article: Colorado Family Wins Insurance for Autism Services. A related article cited in the transcript below is here: After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavior Analysis.

A key issue in this case was that the arbitrator's finding that Applied Behavior Analysis (ABA) is not an experimental therapy, but in fact an early intervention best practice for children with autism spectrum disorders—and a service the insurer should cover. With advocates around the nation seeking to win support for legislation expanding such insurance coverage, Mr. Ewing suggests this arbitration decision could shed some light on what it takes to win support from organizations who may seek to deny such benefits.

The following is a transcript of his responses to questions:

1. How important is the arbitrator's decision?

We believe that the arbitrator's decision is quite important in that it recognizes that ABA therapy is medically necessary when children with autism engage in self-injurious behaviors. We also believe that it casts doubt on many other insurer's medical policies (also known as clinical guidelines) that equate all forms of ABA therapy with "Lovaas therapy."

I note with interest the letter from Scott Cross and Vincent J. LaMarca, BCBA on your website [see the letter here]. The arbiter's comments regarding Lovaas therapy are based upon the expert testimony of Dr. Phillip S. Strain and his review of Anthem's medical policy. I am attaching Dr. Strain's affidavit as well as Anthem's medical policy for your review. As you will note in reviewing the same, Anthem (as well as many other insurers) deem ABA therapy to be experimental and investigational because of the scientific criticisms of Dr. Lovaas' research. Thus, it is important to distinguish pivotal response training and other forms of ABA therapy from "Lovaas therapy" in order to defeat the rationale advanced by many insurers.'

To the extent it is not confidential, I am very interested in sharing the information I gleaned through discovery on the Tappert case with Mr. Cross, Mr. LaMarca and others at the Lovaas Institute for the purposes of working with them to rebut the position taken with respect to Lovaas therapy by many insurers/third party administrators in the United States.

I am also enclosing United Healthcare's medical policy. As you will note, it relies on the criticisms of Dr. Lovaas' research as a basis for deeming all forms of ABA therapy "experimental and investigational."

2. How far-reaching might the Tappert's victory be?

The Tappert's victory opens the door for coverage for ABA therapy of the type Abby Tappert receives for Colorado residents who purchased the Anthem policy at issue. This is a major breakthrough for this subset of people.

While the Arbitration Award (opinion) is not direct legal authority in the same sense that a decision from the Colorado Court of Appeals or Colorado Supreme Court would be, it is written by William G. Meyer, a highly respected former Denver District Court judge. The opinion is thoughtful and well reasoned and no doubt it will be used by attorneys to support their clients' claims for autism coverage.

In his opinion Judge Meyer's states: "It appears both from the greater weight of the references and credible testimony that ABA therapy is the standard of care in treating autism." This statement should resonate with any judge or fact finder who confronts these issues.

3. What role did Colorado state law play in your advocating this case on behalf of the Tapperts? How does the law as it stands now in Colorado help or hinder your efforts?

The fact that the Tappert policy was not subject to the Employee Retirement Income Security Act of 1974 ["ERISA"] made the case easier with respect to the standard of review employed by the arbiter. In terms of Colorado state law, Colorado's common law that requires ambiguous terms of an insurance policy to be interpreted in favor of coverage was helpful in this case.

4. Have you been following developments in other states, notably South Carolina and Texas, that have sought to pass legislation to require insurers to cover ABA and other autism-related services? There are other states which are considering similar moves, and I am wondering if this arbitration decision gives advocates of autism services coverage any points they may use to argue in favor of their efforts?

Since becoming involved in this case, I have become very interested in the legislation regarding autism in other states. Given that approximately 1 in 150 children have been diagnosed with autism, funding for treatment must be addressed. It is my opinion that a neutral [party]'s recognition that ABA therapy is the standard of care for the treatment of children with autism may be useful to others seeking to enact legislation to require insurers to cover this expensive, but much needed treatment. I am hopeful that with more decisions recognizing the efficacy of ABA therapy, legislators will be more inclined to find ways to fund this treatment.

One last note: Mr. Ewing declined to say for publication on this blog whether he saw how insurers who study the Tappert case might try to bolster their efforts to deny coverage of ABA or other autism services.

Monday, February 18, 2008

Special Series of Articles for Parents, Families New to Autism Diagnosis, a website for parents of young children, has just published a four-article series I wrote to help parents and families who are new to autism spectrum disorders—what autism is, what it means for their families, how to find ways to help their children. You can find the links to all four articles below:

What to Do When Your Child Gets an Autism Diagnosis
When your child receives an autism diagnosis, there are many more questions than answers about what it means and what you need to do. Here's how to start the effort to help your child grow and develop—and how to make sure you take care of everyone in your family (yourself included). More

Understanding Autism Spectrum Disorders
Experts like to point out that no two children with autism are quite alike. While that lack of clarity can be frustrating for parents, it demonstrates that researchers and doctors continue to refine their understanding of autism. Here is brief description of the places on the autism spectrum. More

A Basic Guide to Well-Known Autism Therapies

Because autism is a serious disability, and early intervention so important, families tend to do as much for their diagnosed children as they can fit into their lives and budgets. Here is a guide to the most well-known treatments and techniques for helping young children with autism make developmental gains, along with advice for evaluating these approaches and resources to find more information. More

Autism Spectrum Disorders: Finding Support & Resources
If your child was recently diagnosed with an autism spectrum disorder or you're just looking for support and advice from families in similar situations to yours, read on. More

Sunday, February 17, 2008

Interesting List of Blogs by Parents of Kids with Autism

When I asked for suggestions for interesting blogs by parents of kids with autism spectrum disorders, I received dozens of suggestions. You can see the original post here, complete with comments.

Here is a list of the most popular nominations I received:

Parents noted their wide range of reasons for sharing these and other blogs, including the real-life experiences these parents share about raising their kids who have autism spectrum disorders; others noted some of those cited above share their sense of humor through this challenging parenting experience. And still others find value in the information they share.

This is by no means an exhaustive list. As the comments field on the previous post shows, new parent blogs are starting up every day. You can find many more autism-related blogs, including a number of blogs by adults with autism. You can do a search for autism at places like Google Blog Search and Technorati. You can find special autism blog directories, too; a big one is called Autism Hub, based in the U.K.

In one sense, the sheer number of blogs can seem overwhelming; so much to scan, so little time to do it. But there's also a reassuring note to all this activity; you're not in this alone, you can tap into what other parents are going through. Chances are, it's some of the same things you are facing, and they may have some insights to share with you. The web is a great medium for that kind of expression.

Saturday, February 16, 2008

A Basic Guide to Well-Known Autism Therapies, a website for parents-to-be and parents of young children, has published another article I wrote to help parents and families who are new to navigating the world of autism services.

You can find the article here: A Basic Guide to Well-Known Autism Therapies. The article notes:

Because autism is a serious disability, and early intervention so important, families tend to do as much for their diagnosed children as they can fit into their lives and budgets. Here is a guide to the most well-known treatments and techniques for helping young children with autism make developmental gains, along with advice for evaluating these approaches and resources to find more information.

The article includes information on many services families consider to help their kids, with links to other articles and organizations which can provide more information on each kind of service. The article's sections include:

Please note that people have written books about each of these subjects above; this article is designed to provide families confronting an autism spectrum disorder diagnosis with useful information. It's an effort to help families get started on their efforts to help their child.

Sunday, February 10, 2008

Research Finds Families of Kids with Autism Try Five Simultaneous Treatments on Average

Parents of children with autism spectrum disorder don't try just one thing to help their children: they tackle multiple approaches, research from the Interactive Autism Network shows.

On average, children with autism undergo five simultaneous treatments, according to preliminary data published last month. The data comes from surveys filled out by more than 4,000 families.

As you will note from the list of most common treatments below, researchers define the term "treatment" broadly: it can mean services delivered by educators, therapists and medical prescription; special diet; treatment can also mean social stories, which use pictures and symbols as well as words to tell kids with autism what to expect on a family outing, dentist visit or other situation; social skills groups; and weighted blankets or vests.

The Most Common Approaches

Based on the survey data, the most common treatments are listed below:

1. Speech and language therapy
2. Occupational therapy
3. Applied Behavior Analysis (ABA)
4. Social skills groups
5. Picture Exchange Communication System (PECS)
6. Sensory integration therapy
7. Visual Schedules
8. Physical therapy
9. Social stories
10. Casein-free diet
11. Gluten-free diet
12. Weighted blanket or vest
13. Risperdal
14. Melatonin
15. Probiotics

What the Researchers Notice So Far

The list above accounts for more than half of the treatments that families filling out the surveys list, though researchers emphasize that they have to do a lot more analysis of their data to get a clearer picture of what's going on. See a public notice about the research here.

In fact, trying to get a clearer picture of what's going on is a main thrust of this project. The researchers note:

Hundreds of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments... and trying to find a combination that keeps their child stable, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment. By collecting data on families' treatment experiences, IAN hopes to contribute to the effort to identify effective treatments, as well as to guide decision-makers prioritizing which not-yet-proven treatments to study.

That last note suggests that these researchers are seeking to apply some rigor to understanding parents' testimonies about what they see happening with their children—what works and what doesn't—so they can influence research directions in the future.

As for this survey sample, the researchers note that thousands of survey respondents reported that their kids are taking vitamins, minerals and prescription drugs. More specific data about this and other findings are due to be released at an unspecified future date.

Who is the Interactive Autism Network?

The Interactive Autism Network is a web-based project of the Kennedy Krieger Institute, a research and educational organization in Baltimore that specializes in developmental disabilities including autism spectrum disorders. The organization received funding from Autism Speaks, the major nonprofit group, to start the project in January 2006.

Saturday, February 09, 2008

Letter to Autism Bulletin: A Window into Autism Services in North Carolina

Dr. Mark Carroll is president-elect of the North Carolina chapter of the American Academy of Child and Adolescent Psychiatry. Dr. Carroll wrote to share some of his observations about the autism services needs of people in his area near the Blue Ridge Mountains after reading an article I wrote called "Understanding Autism Spectrum Disorders" (see the article here, and a short synopsis here).

Dr. Carroll said the North Carolina Council of Child and Adolescent Psychiatry, is pursuing a new advocacy initiative this year to raise awareness about the need to better serve people with autism spectrum disorders. He gave me permission to publish his letter while emphasizing that the views are his alone, not those of his group. (Note: TEACCH is an approach to delivering autism services that stands for Treatment and Education of Autistic and related Communication-handicapped Children.) Here is the letter:

I am a child and adolescent psychiatrist practicing
community psychiatry mainly in the rural communities
from Winston-Salem, N.C., northwest to the Blue Ridge
Mountains. We are fortunate to have a Developmental
Evaluation Clinic at Wake Forest University and a
TEACCH office in Greensboro.

Still, most of the
local treatment options for autism are in our
schools. The state has a Community Alternatives
Program for developmental disabilities and for
autism, but it has become underfunded with a waiting
list of up to seven years. Many families have no
services at all once the school day is over. Our
state has been privatizing mental health services,
meaning that employers are smaller and more fragile
with a resultant "brain drain." There are fewer and
fewer therapists and skilled workers. For the past
ten years, I have been the lone child and adolescent
psychiatrist serving two counties with a combined
population of nearly 150,000.

Those of us providing professional mental health
services try to keep up hope. There is an election
for governor this year, and a new website designed to inform voters
about candidates and mental health issues.

As you might imagine, it has become a challenge
helping families sort out information when the
internet can seem so much more accessible than local
professionals who may seem not only busy but spread
so thinly. I plan to refer families to your blog,
hoping they will find it to be a balanced and
helpful resource. Who knows, you may even get an
e-mail or two.

Thanks again for your interest and dedication.
Mark B. Carroll, M.D.

Friday, February 01, 2008

Another Source for Presidential Campaigns and Autism Policy

The Autism Society of America has assembled some more references to the candidates' statements on autism spectrum disorders and government policies.

You can find that website page here.

Also see:

Obama Unveils Disabilities Plan

Autism Issue Makes Ripple in Presidential Campaign as Clinton Promises to Spend $700 Million Per Year