Autism Bulletin Updates

I have updated the post about NPR's story on the Micheletti family of New Jersey and their important fight for autism insurance coverage for their young son. It raises issues many families face in the quest to make a positive difference in their children's lives, and I recommend you check it out. See the updated post here.

Also: A quick thank you to many Autism Bulletin readers who have sent notes for additions to the Autism Schools Map Project. I am processing those (recent additions include schools in Tennessee, Virginia and Missouri) and still have more to add from seven other states and the U.K.

You can see the map, which will receive regular updates, in two places:

The original story explaining the project is here: Autism Schools Map Project.

You can also view a larger version of the map here.

I will be researching every note I receive, so please keep those notes and comments coming. You can always post a comment on this blog, or you can e-mail me at michaelsgoldberg AT yahoo DOT com.

NPR Scheduled to Broadcast Segment on Autism Insurance Coverage Sept. 26

National Public Radio is scheduled to broadcast a segment on autism insurance coverage on September 26. The segment is slated to air on "Morning Edition," focusing on a case in New Jersey in which the state's Supreme Court ruled that state workers' health insurance plans required coverage for a family member with autism.

The case is called Jacob Micheletti v. State Health Benefits Commission, and the court ruled the state had to pay for therapies including sessions of Applied Behavior Analysis (ABA), occupational therapy and speech therapy for five-year-old Jacob. NPR interviewed members of the Micheletti family for the story. I will post a link to the story after NPR makes it available; you can also search for it on NPR.org.

UPDATE: The NPR story by Larry Abramson is a must-read (or must-hear) piece for parents of kids with autism, especially those who are interested in the health insurance debate and the characterization of Applied Behavior Analysis (ABA) services as experimental by the health insurance industry. In addition to recounting the Micheletti family's successful quest for coverage in the New Jersey courts, Abramson sheds important light on the issues involved in paying for it, and how insurers resistant to cover these services seek to cast doubt on the effectiveness of ABA.

To read Abramson's story and find a link to hear it (7 minutes and 45 seconds long) go here.

Here's a key passage:

Many insurance companies say they will not cover ABA because they view it as experimental and unproven. The New Jersey State Health Benefits Commission declined to speak to NPR. NPR contacted a number of private insurance companies, such as CIGNA and AETNA. Those companies declined to be interviewed, but they did send regulations that state that they won't cover therapies considered experimental — including ABA.

Pamela Greenberg of the Association for Behavioral Health and Wellness says there just is not enough data on the effectiveness of ABA therapy.

"Yes, there are examples of where ABA has been very effective. And there are other examples of situations where it has been very harmful," Greenberg says. "Coverage decisions need to be made based on the best possible medical evidence and not just on the experience of a few cases."

The Michelettis' victory comes as parents of autistic children across the country are pushing for better coverage of this disorder. But better coverage for some families may mean higher premiums for everyone. That presents a dilemma for insurance companies, according to Mohit Ghose of America's Health Insurance Plans.

"The question then becomes: do you provide that through the healthcare setting, or do you provide that through the educational setting as many states have traditionally done?" Ghose says.

To read more about the case, including links to legal documents, please see:

* New Jersey Supreme Court Upholds Autism Services for Child of State Worker

Also see:

South Carolina Legislature Overrides Veto to Pass Autism Insurance Law

Report on Texas autism insurance legislation and map of states with coverage

Study of Social, Environmental Factors in Autism Subject of High-Profile NIH Grant

Among the series of National Institutes of Health (NIH) grants made to 41 "exceptionally innovative" scientists this week was one to Peter Bearman, a Columbia University sociologist known for his research into social network dynamics who plans to study the role of social and environmental factors in autism.

Bearman is a recipient of a five-year, $2.5 million Pioneer Award from the NIH announced Sept. 18. You can read a press release on all the award recipients here.

Bearman's past research is a fascinating, diverse collection of subjects that, on the surface, appear to have little to do with autism and more to do with adolescent sexual health, Italian politics and how people win elite jobs. Take this passage from his bio provided by the NIH (see the website here):

Peter Bearman, Ph.D., is the Jonathan Cole Professor of Social Science at Columbia University. He also directs the Institute for Social and Economic Research and Policy and co-directs the Robert Wood Johnson Foundation Health & Society Scholars Program at the university. Bearman received a Ph.D. in sociology from Harvard University in 1985. His work centers on understanding how social network dynamics shape diverse adolescent health outcomes. Bearman co-designed the National Longitudinal Study of Adolescent Health and has studied the structure of sexual networks and the risk of sexually transmitted diseases, peer influence and sexual behavior, friendship structure and suicidality, and the determinants of school achievement. His work on sexual networks has been featured in popular magazines, including Time, Harper’s, and Discover.

Bearman's faculty profile at Columbia also notes:

His current research in historical sociology focuses on developing models to case historical event sequences; temporality in historical accounts; recruitment to elite positions, and the structure of global trade networks, 1600-1831. In the area of social networks, his current work focuses on the structure of Italian politics (1986-2002).

So why is this social scientist with wide-ranging interests going to focus on autism? A recent article in The New York Times explains that Bearman and his research colleagues want to delve into the rising tide of autism spectrum disorder diagnoses, and how social networks factor into that rise. Here's an excerpt from the August 5 "Week in Review" article "You, Your Friends, Your Friends of Friends" (the article delved into why researchers were finding that obesity appeared to be contagious):

Now Dr. Bearman and his colleagues are studying autism. The number of autistic children has increased rapidly in recent years, but it is not clear how much resulted from increased diagnosis and how much from an increase in the actual disease.

Dr. Bearman is studying how diagnoses of autism spread. When a child is diagnosed, friends of that child's parents may wonder whether their child has autism as well, and have their child evaluated. Demand for autism evaluations would increase, and doctors and schools would become more sensitive to the disorder and more likely to suspect it. Schools would then provide services for the autistic children in the community, attracting families from other areas where autism was less common and where schools were not as prepared to help.

"There is an enormously important dynamic that draws people into a diagnostic maelstrom," Dr. Bearman says. "Autism is real, but the epidemic very likely has a very important social network component."

No doubt that social network component involves us, parents and families of people diagnosed with autism. It will be interesting to follow what Bearman comes to understand.

Also see:

Anthropologist Casts Light on Autism Views Around the World

New Jersey Supreme Court Upholds Autism Services for Child of State Worker

The New Jersey Supreme Court has ordered a state health insurance plan for state government workers to pay for autism-related services for the young child of a state employee.

The ruling handed down on September 12 upholds an appeals court ruling from January 2007 which ordered the state's health insurance administrators to pay for services such as speech therapy and occupational therapy, illegally denied in the case of Jacob Micheletti. The court said it was illegal to discriminate against someone with autism, which the court described as a "biologically based mental illness." Read more explanation of that case Jacob Micheletti v. State Health Benefits Commission and the court decision here.

The Sept. 12 ruling, which you can find via the New Jersey courts website, is interesting because it specifically orders the state to pay out invoices for services including speech therapy, occupational therapy and Applied Behavioral Analysis/Verbal Behavior Therapy. My reading of the earlier court ruling didn't mention ABA specifically.

The ruling will have a practical impact for the Micheletti family: an estimated $35,000 per year for autism-related services for their son who is five years old, according to a story in the Star-Ledger of Newark. This figure is, of course, not new to families working to assemble a schedule of services for their young children with autism. Whether and how generally this ruling gets applied to other state workers is a matter of debate, the newspaper reports. Joseph Micheletti, a deputy attorney general for New Jersey, told the newspaper he believes the case "should give an opening to the people who really need it."

Not surprisingly, spokesmen for the state health plan administrators at Horizon, and for the state Treasury Department, made two points to the Star-Ledger:
1. Autism services are expensive and raise everyone's health insurance premiums.
2. The state believes the case will have narrow impact, and will lead to case-by-case reviews of autism services claims.

Also noted: In the recent Centers for Disease Control estimates for the prevalence of autism spectrum disorders, New Jersey led the nation at 1 case per 95 children. And New Jersey faces a financial crisis in its state employees health benefits budget, the Star-Ledger reports.

Also see:

* N.J. Court Rulings: State Workers Health Insurance Covers Autism Services

* Autism Prevalence "More Common" Than Previously Believed, Researchers Say

Autism Schools Map Project

There is a growing number of schools across the United States that provide educational services to children with autism spectrum disorders. Some are based at research universities or long-standing nonprofit organizations that have served people with autism for years before the recent sharp rise in diagnoses. Others reflect new efforts by state governments to meet the rising demand for autism services.

With these trends in mind, I've started the Autism Schools Map Project, for which I'm asking for your help. I have created the map below, with a small number of points representing schools around the U.S. that are designed to educate students with autism. Check it out below (if you are an e-mail subscriber click here to see it). If you know of other autism schools or programs, let me know by e-mailing me at michaelsgoldberg AT yahoo DOT com. Please include the school's name, address and website. I will periodically update the map and let readers know it has new information.

Why do this? Finding an effective educational program for a child with autism is among the most important actions parents can take to help their kids progress. For many kids with autism spectrum disorders, a quality educational program is the best prescription for helping them grow as people and can make a positive difference in their quality of life. While there are still not enough options for students with autism, the menu is growing. My goal in making this map is to provide a starting point for parents and other caregivers seeking information about autism education services. In the future, I hope to create an opportunity for families to provide each other with assessments about the quality of the programs listed.

Researchers Engineer Genetically Altered Mice to Study 'Autistic' Social Deficits

Mice genetically engineered to display social interaction deficits are apt models for studying some autism spectrum disorders in people, according to researchers from the Howard Hughes Medical Institute and the University of Texas Southwestern Medical Center.

"The scientists said the mice they developed may represent an important advance in modeling autism spectrum disorders in mice, offering researchers a new tool for understanding how specific defects in neural development may lead to autism," the Medical Institute noted in a statement issued September 6. You can view the full statement here.

The reason this is an advance, according to lead investigator Thomas C. Südhof, is that researchers were able to isolate the social problems in their laboratory subjects. "What sets this mouse model apart is that the mouse shows highly selective social deficits and memory enhancement, but as far as we can tell, no other pathologies. This makes it a potentially useful model for a subset of people with ASDs with just such characteristics," Südhof said. Other experiments using mice to simulate autistic symptoms don't demonstrate this kind of finely-tuned subject, he said.

The researchers published a study in the online publication Science Express, which posted a free brief abstract here. More information about the biochemistry and neuroscience in the research comes from the press release:

The researchers engineered mice that have a single mutation in the gene for a protein called neuroligin-3. This protein functions as a cell adhesion molecule in synapses, the junctions that connect neurons in the brain and allow them to communicate with each other. Synapses are essential to all brain activities, such as perception, behavior, memory, and thinking. Südhof said that the neuroligin-3 mutation that his team recapitulated in the mice has been identified in some people with ASDs. Mutations in proteins that interact with neuroligin-3 have also been detected in some people with ASDs.

Proper function of the brain depends on a delicate balance between excitatory and inhibitory electrophysiological signaling among neurons. Südhof and his colleagues found that this balance was disrupted in the mutant mice, which showed an increase in the signaling of inhibitory neurotransmitters. In contrast, they found that knocking out the neurologin-3 gene entirely produced no such imbalance.

The most striking behavioral abnormality they observed in the mutant mice was an impaired ability to interact socially with other mice. However, the animals showed enhanced spatial learning and memory. They were more able than normal mice to learn and to remember the location of a platform submerged in murky water.

The online publication MedPage Today picked up on this research to explain the information above, while also giving guidance to its audience of doctors about what to tell patients. It gives two pieces of advice:

Explain to patients who ask that the research described here was conducted only in mice, and that it is not known whether the same findings apply to people.

Explain that the genetic mutation the authors described is seen in only a small percentage of people with autism spectrum disorders.

This is good context for laypeople, too, of course. One can imagine, with all the media coverage of healthcare and medical research studies that doctors get bombarded with questions about stories they hear or read in the news—including questions about autism, with the rising caseload and broadening awareness we're experiencing.

This particular study is the second research effort to focus on genetically engineering mice. Also see:

* Scientists Report Reversing Symptoms of Autism in Mice

National Parks Waive Many Fees for Disabled Americans

Old Faithful geyser, Yellowstone National Park.

An Autism Bulletin reader shared this useful tidbit: The National Park Service and other federal agencies that manage recreation lands around the nation waive admissions fees for citizens with disabilities and their caregivers and parents.

What you need to gain free admission is an "Access Pass," explained here at a website of the U.S. Geological Survey, which says:

The pass is for citizens or permanent residents of the United States, regardless of age, who have been medically determined to have a permanent disability. It provides access to, and use of, any Federal recreation site that charges an Entrance or Standard Amenity Fee and provides a discount on some Expanded Amenity Fees. The pass must be obtained in person.

The website goes on to explain that documentation is required to demonstrate a disability that represents "a permanent physical, mental, or sensory impairment that substantially limits one or more major life activities, such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working."

Once acquired, the Access Pass is good for life. The website link above has more details and information about acquiring this pass. Fees may be more complicated than this website suggests (for example, you still have to pay parking fees at Mount Rushmore). But it will allow you to avoid many fees, including those at Yellowstone.

New Florida Autism Charter School Opens in Tampa

The Florida Autism Center of Excellence (FACE), a school for kids with autism spectrum disorders started with a $700,000 state grant, opened the doors to its Tampa campus on August 20. The program set to serve students ranging in age from 3 to 22 will be a school parents and educators around the nation will want to watch for a few reasons.

First is the state of Florida's involvement in opening this school at a time when there's growing demand around the nation for autism services. The state awarded the grant to cover start-up costs for the school to serve the Tampa area.

Second: Tuition is at least partly covered by state scholarships in a program called the McKay Scholarship Program for Students with Disabilities, according to FACE. This is a "school choice" program that allows parents of children with disabilities to find a public or sanctioned private school that meets their student's needs. FACE is a program that's eligible for these funds.

And third: autism services represent a real business opportunity for entrepreneurs. Running the non-profit Florida school is Educational Services of America, a private for-profit operator of special education schools based in Nashville. Mark Claypool, the president and CEO, told the Nashville Business Journal last month that his company is expected to increase its revenues by 20 percent, to $90 million per year, by targeting two areas of opportunity: the rising high school dropout rate and "the big volume of students diagnosed with autism." See the article here. Educational Services of America runs close to 140 programs in 17 states.

These building blocks for FACE—state action to start a school, tuition aid to help make the program available, plus a private corporation putting its management reputation on the line—make the school very interesting for families of kids with autism around the nation to watch and wonder how it works out. Could it be a model for other autism charter schools in other states? We'll have to see.

As for the school itself, educators plan to run it according to the principals of Applied Behavior Analysis (ABA), according to a spokeswoman for the Florida Autism Center. About the school's staff, she said at least one staff member has master's degree training in ABA, and added:

• All staff, both teachers and assistants, have attended extensive training on ABA principles, learning best practices, functional behavior assessment, data collection and teaching methodologies;
• FACE teachers will also be taking several college level courses in the area of autism to be eligible for a special credential in autism to be added to their teaching certificate; and
• Several of the teachers at FACE are applying to the University of South Florida graduate program in ABA.

The school's website also mentions discrete trial training, pivotal response training, functional behavior assessments and positive behavior intervention plans as pieces of its ABA approach.

It's not clear as of this writing how many students have enrolled at the Tampa school; the school says it has a 140-acre campus, which includes a horse stable and boat house with canoes, in addition to other classroom and gym facilities.

Two other notes:

1. Do you have questions for the managers of the Florida Autism Center of Excellence, about how they started, how they plan to run things, how they train staff? Please post a comment at the end of this article, or write to me at michaelsgoldberg AT yahoo DOT com. I will collect them and see if we can get more information about this interesting program.

2. The last time I wrote about Educational Services of America (see Florida Awards $700,000 Grant to Start Tampa Autism Center), I raised questions about the role of a for-profit company in the special education business, which summed up asked: can managers looking to build revenues and maximize profits also deliver quality human services?

An executive from the company, John McLaughlin, wrote a thoughtful response which I am reposting here:

Our mission is to provide excellent education services for students with special needs and at-risk students in a structured and encouraging environment. The best testimony for Michael’s question on the mesh between for-profit and public service can be found in the thousands of families and public school districts that place their students in our schools and programs everyday. We are committed to help students develop academic and interpersonal skills that will lead them toward more independent lives. Having spent the first two decades of my career in the non-profit and academic worlds, I find little difference in the fiscal realities of for-profit and non-profit operations – students come first. ESA is mission-driven to be the best provider of services to children and young adults with autism.