"Therapy Bag" and Viral Issues

At WebProNews, Abby Johnson reports on the Kentucky "therapy bag" case:

Lydia Brown, an autistic college student at Georgetown University, saw the story and decided to create a petition onChange.org. The petition, which has received over 180,000 signatures already, calls for the school to take action against the teacher involved as well as comprehensive training for all school personnel.

However, as with many viral stories, the Christopher Baker case has generated a fair share of controversy. Some people from the autism community have spoken out in defense of the school saying that therapy bags are often used for treating autistic individuals.

Another debatable issue is in regards to how the bag was used. Christopher’s mother says he was put into the bag for misbehaving, which raises concerns over the use of seclusion and restraint in the treatment of individuals with disabilities.
Amy Dawson, the Founder of the Autism Advocacy & Law Center LLC, told us that seclusion or restraint could be harmful to any child but especially those with disabilities since he or she may not be able to fully understand what is happening.

At this time, the school board has said that it has concluded its investigation and is moving on. Sandra Baker, who now has legal support from The Gallini Group in Alabama and Chevalier Ginn Shirooni & Kruer in Kentucky, is continuing to fight the incident.

 

Autism in Ventura County

In Ventura County, California, The Acorn reports:

Fran Arner-Costello, director of programs and services at the Ventura County Special Education Local Plan Area (SELPA), said children with autism make up about 11 percent of the 16,000 students with disabilities served by the county’s school districts.

“These are kids who meet the special education eligibility guidelines, which are different from a medical diagnosis of autism,” Arner-Costello said. “It’s not a mental health diagnosis, so the guidelines are not as stringent. It’s more of an educational designation.”

As of December 2011, Ventura County SELPA provides special education services to 1,780 children and adults from infants to age 22 under the autism designation— 7 percent more than the 1,659 people with autism it served in 2010.

“Some of the kids may have just a few characteristics—mild social and communication deficits,” Arner-Costello said. “Then some may be considered full-scale autistic, with extreme symptoms and more intensive social, cognitive and developmental needs.”
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Steven Graff, director of clinical services at the Tri-Counties Regional Center (TCRC)—the agency through which the state of California provides services and support to people with developmental disabilities in Ventura County—said the rise may be attributed to a number of factors.

“First of all, we’re much better at diagnosing autism now,” Graff said. “We’re catching it younger and identifying it more accurately. That’s going to count for a huge percentage of the increase.”

Graff said environmental factors— such as pesticides, herbicides and other chemicals that can affect fetal development—also may contribute to an increase in autism prevalence.

“It’s not legitimate to say it’s rising only because of one thing,” Graff said. “If you’re looking at a minimum of three or four factors, there’s going to be a certain amount of overlap. It’s most definitely a multifactorial question.”

Still, Graff said the prevalence of autism in Ventura County has “absolutely increased.”

California Legislative Action

At AP, Judy Lin reports on action in California:

The state Assembly on Thursday passed a set of bills intended to broaden the mental health and health care services covered by private insurance plans. 

Lawmakers approved AB154, which would require insurers to cover the diagnosis and treatment of mental illnesses, and AB171 for coverage of developmental disorders such as autism. They also approved legislation to cover oral chemotherapy treatments and mammograms regardless of age. 

The bills now move to the Senate ahead of a Tuesday deadline to pass legislation that was introduced last year.

From the Assembly bill analysis:

According to the author, this bill is intended to  confirm existing law and close perceived loopholes that health  plans and insurers exploit to deny essential treatment to individuals with PDD/A. The author maintains that, by explicitly listing medically necessary health care services that  must be covered for PDD/A, this bill confirms the coverage in the existing mental health parity law and basic health care  service requirements and will significantly reduce the need for  the DMHC and CDI to overturn continually erroneous coverage  denials by plans and insurers. The author points out that  requiring health plans and health insurers to cover screening,  diagnosis, and treatment of PDD/A and to develop and maintain  networks of qualified PDD/A service providers will force them to  bear their fair share of the responsibility for providing  essential and comprehensive treatment to the families in  California impacted by these conditions. The author adds that  this bill is intended to complete the end of insurance  discrimination against individuals with PDD/A that was started  in 2011 with the enactment of SB 946 (Steinberg), Chapter 650, Statutes of 2011, which dealt with behavioral health treatment  by addressing screening diagnosis and the remaining essential  medical treatments for PDD/A, such as speech, physical and occupational therapy, which are routinely denied despite clear  coverage requirements in existing law.

Doyle Calls on HHS to Include ABA

A press release from Rep. Mike Doyle:

U.S. Representative Mike Doyle (PA-14) announced today that he had contacted Health and Human Services (HHS) Secretary Kathleen Sebelius to urge her to require coverage of behavioral treatment for people with Autism Spectrum Disorders in all of the insurance plans that will participate in the health insurance exchanges that will open up across the country in 2014.

On December 16, 2011, the HHS Center for Consumer Information and Insurance Oversight issued an “Essential Health Benefits Bulletin” to provide guidance to State agencies working to set up the health insurance exchanges required under the health care reform legislation signed into law by President Obama in 2010. (the Patient Protection and Affordable Care Act, P.L. 111-148). These health insurance exchanges will open across the country in 2014 to act like supermarkets where individuals, families, and small businesses can shop around for an insurance policy that best meets their needs. This bulletin left the decisions about what health care benefits must be covered by insurance plans competing for customers in these exchanges up to the States that are setting them up.

“The evidence and scientific support for behavioral health services coverage for ASD is overwhelming,”Congressman Doyle observed in his letter to Secretary Sebelius. “That’s why I worked hard to ensure that behavioral treatment services like applied behavioral analysis would be covered by all of the insurance plans participating in the new health insurance exchanges.”

As a result of Congressman Doyle’s efforts, Section 1302 of the Patient Protection and Affordable Care Act, P.L. 111-148, required that the “Essential Health Benefits” required of all plans participating in the health insurance exchanges include “Mental health and substance use disorder services, including behavioral health treatment.”

The Essential Health Benefits Bulletin issued by HHS last month left States free to exclude behavioral health for individuals with autism spectrum disorders from the Essential Health Benefits they require insurance policies to cover.

Congressman Doyle’s letter to Secretary Sebelius urged HHS to revise its guidance on Essential Health Benefits to require insurance plans participating in any health insurance exchange to cover behavioral health treatment services like applied behavioral analysis for individuals with autism spectrum disorders.

“Insurance companies shouldn’t be able to deny any group of patients coverage for medical treatment that has been proven to be both safe and incredibly effective,”Congressman Doyle added. “That’s clearly what’s been happening with behavioral health treatments for people with autism. I will continue to push to ensure that behavioral health treatment services for individuals with autism are required as Essential Health Benefits as of 2014.”  

Click here to see the letter.

ASD and Hollywood

At The Boston Globe, Joseph P. Kahn writes that the movie "Extremely Loud and Incredibly Close" and the TV series "Touch" feature child characters who appear to have ASD.

Another TV series, NBC’s “Parenthood,’’ features an 11-year old boy with Asperger’s. His family’s struggles to help him adjust to daily life constitute a recurring theme on the two-year-old show. Characters with Asperger’s have also shown up in “The Big Bang Theory,’’ “Grey’s Anatomy,’’ and HBO’s feature “Temple Grandin.’’

Besides “Extremely Loud,’’ “Mozart and the Whale’’ (2005) and “Adam’’ (2009) are among recent movies with a story line involving Asperger’s. Novels such as Jodi Picoult’s “House Rules’’ have added to the overall picture as well, as have first-person accounts like David Finch’s new book “The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband.’’
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Peter Bell is president of the advocacy group Autism Speaks and parent of an autistic teenager. The big change in public awareness has occurred over the past five years, according to Bell, when shows like “Parenthood’’ came along. “Most depictions have been pretty good,’’ said Bell. “And I think most families enjoy seeing autism depicted, as long as the focus is on the more positive aspects.’’

John Scott Holman, a blogger for Autism Speaks and Wrong Planet, likewise gives “Parenthood’’ high marks. He is exploring the topic of “pop autism,’’ as he puts it. Now that Holman, who lives in Kansas, has been diagnosed with Asperger’s, “it seems contagious,’’ he quipped. “It’s practically become trendy, a pop culture buzzword.’’

DSM-V, Blood Pressure, and Redistricting

At CNN, Dr. Charles Raison uses a couple of analogies to explain issues surrounding DSM-V:

All psychiatric diseases are like blood pressure. They are on a continuum without gaps. If one administered questions to identify any condition and rate its severity in a large enough group of people, one would find someone occupying every value from zero to the maximum score.

The problem in psychiatry is that our entire diagnostic system is based on the idea that mental illnesses are like cancer and not like blood pressure. The DSM provides minimum criteria for each disorder, which means that no matter how close you are to having any given condition, if you fall below the line you technically don’t have it.

I suspect you can see the problem immediately. If nature does not provide clear guidelines for where normal stops and mental illness begins, how does the line get drawn? The quick answer is that it gets drawn in much the same way the voter redistricting lines get drawn: based on some data, a lot of fighting, and finally some not entirely satisfactory compromise.

So back to autism. Like all other mental disorders, it runs along a spectrum from people who most of us would have called nerdy when I was a kid to people who spend their lives unable to speak, rocking back and forth for hours on end. We all agree that the silent, rocking folk are ill and need care. But where does extreme nerdiness and social awkwardness give way to Asperger’s syndrome? When is someone autistic enough to deserve the label?

DSM-V: Pros and Cons

At The Huffington Post, Allen Frances writes:

The pressure for services naturally stretches the boundary to include children with a heterogeneous array of problems that place them in vaguely defined territory, further and further away from classic autism. Any effort toward a more precise definition will narrow the spectrum and therefore seem to threaten the services that have been tied to the diagnosis.

So how can we accomplish both important goals -- i.e. achieve a more precise diagnosis of autism AND not deprive services for those who need them? I think the best solution is to decouple school services from the DSM diagnosis of autism. Instead of DSM diagnosis, the child's specific learning and behavioral problems should guide eligibility and individualized planning.

Children who now get inappropriately labeled autistic should lose the inaccurate diagnosis, but not lose the needed services.

But this proposal raises the question: if not DSM, what?  Absent a clear (if flawed) set of criteria, how do officials decide who gets services?

At CNN, Jennifer A. Pinto-Martin writes:

One positive outcome of revising the criteria could be an impetus for the development of more targeted services and therapies that can better serve the needs of children across the autism spectrum. ...

Insurance companies will be motivated to reimburse for therapy that can demonstrate improvement in functioning, and a more targeted approach has a better chance of achieving this goal.

From the perspective of medical research, the change in criteria is both good and bad. The search for the cause of autism has been hampered by the current one-size-fits all definition. Many researchers believe that the various subtypes of autism may well have differing causes. By narrowing the diagnostic criteria, researchers can sort those with the disorder with great clarity and consistency of symptoms.

On the other hand, monitoring changes in the prevalence of autism over time -- an important, ongoing research initiative -- will be hampered. Tracking prevalence is one of the major tools in epidemiologic investigations because it gives us useful clues about the causes and risk factors for health problems. By changing the way in which children are labeled, we will face a decrease in prevalence. Finding out the real change in risk from an artificial increase or decrease can be difficult.