EBD Blog

Over on SpedPro I’ve posted a note about the call for papers for the 14th International Child & Adolescent Conference, to be held 6-8 November 2008 in Minneapolis (MN, US). Jump to that post.

Over on A Photon in the Darkness, one can read a good reflection on mitochondrial mutations and their relationship to Autism. Of course, there’s a lot of hub-bub about mtDNA, because of the article by Hannah Elliott and colleagues, “Pathogenic Mitochondrial DNA Mutations Are Common in the General Population,” that appeared in American Journal of Human Genetics last month. The analysis on A Photon in the Darkness provides a reasonable person the opportunity to understand why—and why not—to connect it with Autism. Learn about Mitochondrial Mutations and Autism.

Courtesy of the ever-alert Liz Ditz, here’s an opportunity for US parents and others to emphasize issues in services for individuals with Autism and their families (e.g., research on evidence-based practices).

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On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.
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Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
Notice Number: NOT-MH-08-016
Key Dates:
Release Date: August 11, 2008
Response Date: September 19, 2008

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.

Information Requested

The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

Responses

Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.

Inquiries

Inquiries regarding this notice may be directed to:

Azik Schwechter, Ph.D.
Office of Autism Research Coordination
National Institute of Mental Health
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892-9669
Telephone: (301) 443-7613
FAX: (301) 480-4415
Email: schwechtera @ mailnih.gov

I discovered that I had mistaken paths for some of the documents in the “Documents” section of EBD Blog, and I’ve corrected them. So, if you’re interested in the contents of the data base on placement literature, those PDFs can now be downloaded correctly. Sorry for the problems.

Last December, Delegates Robert Marshall and colleagues of the legislature of the Commonwealth of Virginia (US) introduced a bill that would require health insurance companies to pay costs of habilitative services for children and youths. A potential effect of the legislation is that families of children with Autism would be able to receive support for the costs of intensive behavior therapy in the their homes.

The legislation defines “habilitative services” as “health and social services directed toward increasing and maintaining the physical, intellectual, emotional, and social functioning of developmentally delayed individuals, including occupational, physical, and speech therapy; assistance, training, supervision, and monitoring in the areas of self-care, sensory and motor development, interpersonal skills, communication, and socialization; and reduction or elimination of maladaptive behavior.” The legislation refines the term by referring to “medically necessary habilitative services” as “habilitative services that are certified by the Department of Mental Health, Mental Retardation and Substance Abuse Services as designed to help an individual attain or retain the capability to function age appropriately within the individual’s environment and shall include habilitative services that enhance functional ability without effecting a cure.”

The Loudoun Project, a network of volunteers concerned about Autism, sponsored the Loudoun County Autism Summit in July of 2008; the summit focused on generating support for this legislation. The group has multiple recommendations about supporting the legislation:

a) Contact members of the Special Advisory Board on Mandated Health Insurance Benefits by email and/or phone by 8/15 (Tab 1 in Targeted Legislators attachment)
b) Contact legislative members of the Joint Legislative Audit and Review Commission by email and/or phone by 8/22 (Tab 2 in Targeted Legislators attachment)
c) Write a letter for the record to: florence.morris@scc.virginia.gov by 8/15.
d) Attend the Public Hearing on HB-83 in Richmond on Monday, September 29 at 1pm (General Assembly Bldg, House Rm D).
e) Register for www.autismvotes.org to get alerts to activate our grassroots efforts.
f) Pass the word to other friends, family, co-workers, church groups, etc to make calls/send emails and do actions a)-e) above.

The Loudoun Project also has an on-line petition regarding the legislation.

Link to the Virginia legislation. Link to the Loudon Project and the Loudoun County Autism Summit. Read a letter from Jane Barbin of the Association for Science in Autism Treatment about the legislation. Read Alex Bahr coverage of the summit under the headline “Parents, Professionals Share Experiences At Autism Summit” from the paper Leesburg Today.

Gerald R. Patterson

The American Psychological Association (APA) Division 7 (Developmental Psychology), which is holding its annual meeting this weekend in Boston (MA, US), will recognize Gerald R. Patterson with the Urie Bronfenbrenner Award for Lifetime Contribution to Developmental Psychology in the Service of Science and Society. The award will, no doubt, be based on Jerry’s extensive and sound research on the nature, causes, and treatment of anti-social behavior in families.

According to Web site for Developmental Psychology Division of APA,

The award is for an individual whose work has, over a lifetime career, contributed not only to the science of developmental psychology, and who has also worked to the benefit of the application of developmental psychology to society. The individual’s contributions may have been made through advocacy, direct service, influencing public policy or education, or through any other routes that enable scientific developmental psychology to better the condition of children and families.

This is a wonderfully well-deserved honor for Jerry. I was very fortunate to have the opportunity to work with Jerry and his colleagues for a couple of years during my graduate studies; I learned as much about research from hanging around that operation as I did from many of my formal classes combined. His work has influenced many other researchers and clinicians as well as having a direct, beneficial effect on children and youths and their families. Learn more about Jerry and his collaborators’ research at the Oregon Social Learning Center Web site. Also, see Division 7’s Web page about the Bronfenbrenner Award.

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.

Thanks to Bret over at 29 Marbles I’ve learned that there is an online debate at Opposing Views about the relationship between Autism and vaccinations. Opposing Views publishes statements by people (“interested experts, opinion leaders and advocates”) its editors have identified and invites others to make comments and vote for the pro or con position on the issue. In this instance (there are lots of debates), the question is framed in this way:

Are Autism and Vaccines Linked?

Over the last decade, autism has gone from a rare and misunderstood condition to a disorder that may affect as many as 1.5 million Americans. Without a clear explanation in sight, parents and doctors have worked tirelessly to pinpoint the cause of autism, but the answer remains elusive. Are vaccines the missing link?

The experts arguing the pro position are identified as the National Autism Association, SafeMinds, and Dr. Karima Hirani. The experts arguing the con side are identified as the Montreal Children’s Hospital at MUHC, Dr. Bryna Siegel, and Dr. Jennifer Shu. Readers who support the pro side have cast more votes than those who support the con position; as 6 August at 6:25 AM there were 153 votes, with 82% saying “yes” and 18% saying “no.”

Links to OpposingViews.com and to the debate entitled Are Autism and Vaccines Linked. Although 29 Marbles is included in the blogroll, here’s a link to Bret’s blog (at it’s new site) for good measure.