EBD Blog

Children and youths with ADHD and their families ought to know about systems of care. Systems of care are networks of services that are coordinated across different agencies and groups within the community. A system of care focuses on the needs of individuals and should be designed so that it takes advantage of that person’s strengths (i.e., is “strengths based”) and unique characteristics (e.g., ethnic background and native language).

Systems of care have been studied extensively in the disciplines focused on Emotional and Behavioral Disorders. They are not just for kids “lost to the streets.” The coordination of services can be beneficial for individuals with ADHD, too.

Learn more about ADHD and systems of care from the SAMHSA, the US Substance Abuse and Mental Health Services Administration. Download a PDF.

On behalf of the families of two children with Autism, a consumer advocacy groups claims that regulators in California (US) are allowing insurers to deny access to needed therapy. Consumer Watchdog seeks to require the Department of Managed Health Care to mandate that insurers pay for treatment based on applied behavior analysis for children with Autism.

KABC LA coverage

On the heels of the recent agreement in Michigan (US), I have to wonder whether advocates for children with Autism are seeing the beginning of a wave of changes in insurance support for early and intensive behavioral treatment of Autism.

Consumer Watchdog, which was previously known as “Foundation for Taxpayer and Consumer Rights,” has a pretty broad agenda. In addition to insurance issues, it addresses patients’ rights, political corruption, corporate excesses, and other topics. Consumer Watchdog’s site has links to multiple items regarding Autism.

Also see coverage by Lisa Girion of the Los Angeles Times: “Autism patients’ treatment is denied illegally, group says“; Ms. Girion covered this topic previously (see 10 Mar 2009). For other earlier posts on EBD Blog about insurance coverage for children with Autism, see 25 Jun 2009 and 20 Sep 2008.

In the US state of Michigan, a major health insurance provider will now reimburse families for the cost of providing therapy for children with autism. The case, Johns v. Blue Cross Blue Shield of Michigan, arose because Blue-Cross-Blue-Shield denied payment for behavioral treatment often called “ABA” to the family of a child with Autism. The case was settled in favor of the family last week.

Represented by Gerard Mantese, Mr. Christopher Johns alleged that the insurer should pay for the therapy for his son under the provisions of the policy. The insurance company refused and Mr. Johns sued. During depositions, Mr. Mantese and others on the Mr. Johns’ legal team learned of a draft memorandum identifying the behavioral therapy as effective and that a representative of the insurer would probably elect the behavioral therapy if that representative had a child with Autism.

Because Mr. Johns’ complaint was part of a class action suit, many other families will also benefit from the settlement. In an independent analysis of the case, Tresa Baldas discussed the implications.

The $1 million class action settlement from Blue Cross Blue Shield of Michigan comes amid a legislative wave in which a growing number of a states are passing laws that require insurance companies to pay for autism treatments and screenings. To date, 13 states have such laws, the most recent being Connecticut, Colorado and Nevada. New Jersey is currently considering an autism bill, and Pennsylvania’s law goes into effect July 1.

The June 17 Michigan settlement, meanwhile, has autism advocates hopeful that insurance companies will stop claiming that behavioral therapy for autistic children is experimental, and start paying for it.

“It is a significant victory for the families, obviously, and it marks a trend, hopefully, that insurance companies will start to look at autism treatment differently,” said Areva Martin, an attorney at Los Angeles-based Martin & Martin who is currently handling about 30 autism cases. She believes the labeling of autism treatments as experimental is “absurd.”

I wonder what this will mean for the California rules that do not expressly exclude behavioral therapies, but set requirements for deciding whether they are reimbursable (see my earlier post on that story).

Link for a quasi-news article about the settlement. Read another of the law firm’s press releases. Here’s link to Ms. Baldas’ analysis of the case.

Writing in the Chicago (IL, US) Tribune, Trine Tsouderos has published an informed and valuable story about the use of Lupron to treat Autism.

Desperate to help their autistic children, hundreds of parents nationwide are turning to an unproven and potentially damaging treatment: multiple high doses of a drug sometimes used to chemically castrate sex offenders.

The therapy is based on a theory, unsupported by mainstream medicine, that autism is caused by a harmful link between mercury and testosterone. Children with autism have too much of the hormone, according to the theory, and a drug called Lupron can fix that.

“Lupron is the miracle drug,” Dr. Mark Geier of Maryland said after meeting with an autistic patient in suburban Chicago.

Geier and his son developed the “Lupron protocol” for autism and are marketing it across the country, opening clinics in states from Washington to New Jersey. In the Chicago area, the treatment is available through Dr. Mayer Eisenstein, a family practitioner in Rolling Meadows.

As is usually the case with these sorts of therapies, testimonials are the main source of evidence about effectiveness. There are no controlled studies of pharmacotherapy with Lupron for children with Autism. The drug, which decreases secretion of gonadotropins, is legitimately used in treating prostate or breast cancer, endometriosis, uterine fibroids, or precocious puberty.

Link to “‘Miracle drug’ called junk science: Powerful castration drug pushed for autistic children, but medical experts denounce unproven claims.” Also, see a companion piece entitled “Autism doctor: Troubling record trails doctor treating autism,” in which Patricia Callahan and Ms. Tsouderos provide a detailed report of the history of one of the physcians in the Chicago area, Dr. Mayer Eisenstein, who has been prescribing Lupron for children with Autism.

The Council for Children with Behavior Disorders (CCBD), an international group concerned about children and youths with EBD, published statements about the use of seclusion and restraint with students. Although the documents appear to be in preliminary form, they began circulating on the Internet today, so I’m posting copies of the PDFs here. Watch for an update of them.

• CCBD’s Position Summary on Physical Restraint & Seclusion Procedures in School Settings
• CCBD’S Position Summary on the Use of Physical Restraint Procedures in School Settings
• CCBD’S Position Summary on the The Use of Seclusion in School Settings

Link to the CCBD Web site.

Over on Autism Street, Dad Of Cameron (“Do’C”) has assembled a list of sources that have questioned the strength of the evidence about hyperbaric oxygen therapy for Autism. I’m flattered that he included the entry from EBD Blog.

The recently published study by Rossignol and colleagues about hyperbaric oxygen therapy (HBOT) for Autism has generated lots of commentary and is sure to lead to more. Because it is a treatment study and employs more careful methods than are common in many of the therapies promoted these days, I sat up and said, “Hmm. I ought to read this one.”

So I did. And I found it to be, indeed, a cut above much of the ersatz research that’s passed off as evidence in the Autism arena. But, I found some concerns, too.

Those concerns led me to poke about a bit on the Internet to see whether there were any others who were raising questions. There are. And I still have some more poking to do. But, I thought I ought to record my concerns. Thus this post.

Continue reading ‘Does Rossignol et al. show HBOT’s effective?’

Wednesday Social Programs that Work, an organization dedicated to , recognized the Multidimensional Treatment Foster Care (MFTC) program as having strong evidence of its benefits for youths who have many strongly delinquent behavior problems. The developers of the MTFC program include Patricia Chamberlain, Ph.D., John Reid, Ph.D., Philip A. Fisher, Ph.D., and Gerard Bouwman; they are closely associated with the Oregon Social Learning Center (a long-time resident of EBD Blog’s Web resources list). Over the last ~10 years the researchers have conduct multiple randomized clinical trials testing the intervention, and they have consistently found positive outcomes for the youths and their families.

Multidimensional Treatment Foster Care (A foster care intervention for severely delinquent youths)

Randomized controlled trials show sizable reductions in youths’ criminal activity.

Description of the intervention: The Multidimensional Treatment Foster Care program provides severely delinquent youths with foster care in families trained in behavior management, and emphasizes preventing contact with delinquent peers. Typical community treatment for such youth, by contrast, often involves referral to a group care facility with other troubled youth.

As an example of the program’s behavior management techniques, foster parents track and regulate the youths’ behaviors using a point system, with youths receiving points for positive behaviors (e.g., completing chores, attending school regularly), and losing points for negative behaviors (e.g., not completing homework, or not listening to an adult). As youths accumulate more points, they are afforded more freedom from adult supervision.

The program provides the youths and their families with individual and family therapy during their participation in the program, and program case managers closely supervise the youths/families through daily phone calls and weekly foster parent group meetings. The average length of stay in the program is 6-7 months. The average cost is about $3,600 per month (2008 dollars), which is 30 to 50 percent lower than the cost of residential group care (the typical alternative treatment, in which youths are placed in group homes with other offenders, and often provided family therapy.)

Link for the SPTW Web page about the evidence for MFTC (source for the quoted material) and to the Web site that supports adoption of the program.

In a systematic review of the research about parent training, Jennifer Wyatt Kaminski and colleagues of the US Centers for Disease Control identified factors that contribute to the effectiveness of programs that help parents manage the problematic behavior of their children. Of the 18 factors that they examined, only five proved to be important. Parent training programs that taught parents to respond consistently to problems, practice positive interactions, use time out, and required them to practice these skills with their own children led to greater effects on children’s externalizing behavior, but those that emphasized promoting children’s social skills had smaller effects on externalizing behavior.
Continue reading ‘Effective child management for parents’