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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety Conference Call on November 29, 2010

The Subcommittee on Safety held a conference call on Monday, November 29, 2010, from 10:00 a.m. to 11:15 a.m.

Participants: Lyn Redwood, R.N., M.S.N., Co-Chair, Coalition of SafeMinds; Alison Tepper Singer, M.B.A., Co-Chair, Autism Science Foundation (ASF); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Peter van Dyck, M.D., Health Resources and Services Administration (HRSA); Sharon Lewis,* Administration for Children and Families (ACF); Cathy Rice, Ph.D., CDC (representing Coleen Boyle, Ph.D.).

*Note: Sharon Lewis was present throughout the teleconference but was unable to comment through much of the early meeting due to technical difficulties.

Roll Call, Welcome, and Introductions

Dr. Daniels welcomed the new Subcommittee on Safety that had been formed at the request of the full committee at the meeting on October 22, 2010. She noted that Ms. Alison Singer and Ms. Lyn Redwood would serve as chairs for the subcommittee and she then conducted roll call.

Overview of Wandering/Elopement Issue

Ms. Redwood thanked the participants and explained that they had been compelled to create the subcommittee based on a presentation describing the dangers of ASD-related wandering presented by the National Autism Association (NAA). A survey by the organization revealed that 92 percent of those responding had experienced at least one instance of his or her child wandering from a supervised area. The presentation had also cited a study showing that people with ASD had much higher mortality rates than the general population. Many of the deaths were attributed to seizures and accidental suffocation or drowning. The presenters noted that people with Alzheimer's disease had similar issues with wandering behavior but that, unlike autism, a diagnostic code existed and Federal funding was dedicated to subsidize tracking technology. In addition, an emergency alert system called the Silver Alert had been developed to combat dementia-related wandering. Ms. Redwood noted that there are currently no formal data on ASD-related wandering and it is unknown how frequently incidents occur, what prompts them, and whether they are reported to the authorities. She cited the need for a cost-benefit analysis to examine the use of tracking technology and the need for greater public awareness and education for first-responders. This could include a toolkit on prevention strategies. The NAA had also called for the IACC to create a Safety Subcommittee and add an objective to the Strategic Plan for ASD Research specifically related to ensuring the safety of people on the spectrum.

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Discussion of Draft Letter to the Secretary

Ms. Singer thanked the NAA representatives, Ms. Wendy Fournier and Ms. Lori McIlwain, as well as Ms. Sheila Medlam who shared the story of her five-year-old son's recent drowning after eloping from home. She said that the committee had been moved by the emotional testimony and that they must act with urgency to help prevent more deaths. She noted that the subcommittee's first charge was to draft a letter to Secretary Sebelius recommending measures to address ASD-related wandering. The subcommittee had been provided with a letter drafted by members of NAA and optional supplementary language developed by the Office of Autism Research Coordination. Ms. Singer said that the retelling of Ms. Medlam's story in the document provided by OARC strengthened the NAA letter and recommended incorporating it if Ms. Medlam was comfortable with its inclusion. She emphasized that the subcommittee's recommendations needed to be within the Secretary's purview to have impact. Dr. Daniels said that OARC would check to see if Ms. Medlam would agree to having her story incorporated into the letter and noted that the draft letters were available on the IACC website.

The subcommittee then reviewed the recommendations put forth by NAA. The first related to establishing a medical diagnostic code for at-risk individuals with ASD who are prone to wandering. Ms. Redwood noted that the International Classification of Disease (ICD-9) codes are developed by the World Health Organization but that an existing code, 294.11, covered dementia-related wandering. She suggested exploring whether this code could be used to include wandering associated with ASD until a new code could be established. Dr. Cathy Rice and Dr. Peter van Dyck voiced their concern about drawing an association between dementia and ASD. Dr. Coleen Boyle noted that the National Center on Health Statistics (NCHS) was trying to determine whether there remained time to give input into the development of the ICD-10 codes. Ms. Redwood said that she was concerned about the time it would take to develop a new code and so had suggested using the dementia-related code in the interim. Ms. Singer reiterated that it would be important to include some sort of recommendation related to a medical subclassification.

The subcommittee then discussed the recommendation to create an alert system for children with ASD or other developmental disabilities similar to the AMBER alert for abducted children or the Silver Alert for adults with Alzheimer's disease and other cognitive disabilities. Ms. Singer noted that much of the controversy during the development of the Silver Alert program related to the fact that it applied specifically to adults and not children, thus raising concerns about civil rights, but that since the autism-related alert that the subcommittee is discussing would apply mainly to children, she did not foresee similar concerns in the community. Because the infrastructure for related alert systems is already in place, Ms. Singer said that she felt this recommendation to create an autism/wandering alert could be implemented relatively quickly.  Dr. van Dyck asked which Federal agency had oversight of the AMBER and Silver Alert. Ms. Singer explained that the Department of Justice was the responsible party and suggested coordinating with the person in the agency who serves as AMBER Alert Coordinator. Ms. Singer also suggested that an autism-related alert be called the Mason Alert in honor of Ms. Medlam's son.

Returning to the earlier conversation on medical classification, Ms. Redwood read a formal definition of dementia in children which "may present as a deterioration in functioning, as in adults, or as a significant delay or deviation in normal development." She agreed with people's concerns about using a code focused on dementia but said she was seeking something that could quickly be used. Dr. Boyle said that they should try to focus on developing a new code with the guidance of clinical experts. Ms. Singer returned to the alert recommendation and the subcommittee agreed it should be included in the letter.

Next the subcommittee discussed the recommendation to develop federal programs related to first-responder training, tracking technology access and oversight, and swim lessons. Ms. Redwood suggested noting that there were already similar programs in place for Alzheimer's. Dr. van Dyck stated that citing swimming lessons may detract from the rest of the recommendation and Ms. Singer also noted that it was outside the Secretary's purview. Dr. Rice asked whether they should recommend including safety provisions in individual intervention and treatment plans. Ms. Singer suggested that this might be most relevant to the section about raising public awareness. Dr. Boyle suggested instead creating a separate recommendation around prevention measures. Ms. Redwood noted that it would be important to collect data to determine risk factors for elopement behavior before prevention materials could be developed. The subcommittee agreed that swimming lessons should be moved to a separate section and continued reviewing the draft letter.

The next recommendation called for the development of formal safety information materials for caregivers, first-responders, and physicians. Ms. Singer suggested including mention of materials focused on prevention. Ms. Redwood suggested collaborating with the American Academy of Pediatrics (AAP). The subcommittee members agreed but questioned whether the recommendation should be included in a letter to the Secretary if it fell outside her purview. Dr. Boyle recommended rewording the recommendation to call for collaboration between Federal agencies and the American Medical Association (AMA) and AAP to develop informational materials.

Ms. Sharon Lewis then joined the conversation. Due to technical difficulties, she had been present throughout the teleconference but was unable to be heard by the Subcommittee.  She expressed her concerns about the lack of data on wandering behavior and the potential for tracking devices to conflict with a person's level of independence and self-determination. She noted that an alert for individuals with developmental disabilities may not be comparable to the AMBER or Silver Alert. This population was discussed during Congressional debates on the Silver Alert and advocates were concerned with issues of self-determination. Ms. Redwood said that participation would be completely voluntary and used only if parents and physicians agreed it was necessary to ensure the safety of the child. Ms. Singer said that they must consider the hierarchy of needs – self-determination is a secondary consideration when the child's basic safety is not guaranteed.  Ms. Lewis noted that her children had also wandered so she understood safety concerns but that self-determination must be encouraged for children of all ages and functional levels and that tracking devices had the potential to impede growth toward independence. She said that these considerations become most salient when the individual is nearing adulthood. Ms. Singer asked if Ms. Lewis's concerns would be addressed if the recommendation applied only to children and adults whose parents were still their legal guardians due to their level of intellectual disability. Ms. Lewis said that this would begin to address concerns but that moving forward, it would be important to consider less invasive alternatives to tracking devices such as family education training and positive behavioral supports. The subcommittee agreed that 18 years of age would be used as their definition of adulthood.

Ms. Redwood asked Dr. Boyle to speak about the recommended data collections for the CDC. Dr. Boyle said that she had redrafted the recommendation to include HRSA's National Survey of Children with Special Healthcare Needs and a general study of U.S. children that included some with ASD. Two questions would be added to the National Survey of Children with Special Healthcare Needs – one related to the frequency of wandering and the other to the level of parental concern about the behavior. Ms. Singer asked if a study using the data would be published in MMWR and Dr. Boyle said that data would first need to be collected and analyzed. She noted that the CDC was considering conducting an analysis on the causes of death for children with autism compared to other chronic health conditions. Ms. Redwood asked if there were methods to ensure that medical examiners noted autism on the death certificate. Dr. Rice said that they were currently in the process of examining the death certificates of the few children with ASD included in the CDC prevalence studies that had since died.  A publication was expected; however, the date of the article and the journal was unknown because the researchers had not yet completed the analysis.

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Discussion of Action Items and Future Activities

Ms. Singer suggested submitting a survey on safety to the 13,000 families participating in the Interactive Autism Network (IAN), but noted that the Secretary would be most responsive to data collected by the CDC. She recommended developing an objective for the Strategic Plan describing the necessary data collection efforts. Ms. Redwood suggested that the subcommittee also propose a Strategic Plan objective calling for research on the underlying biological causes of wandering behavior. Dr. Boyle suggested developing an additional Strategic Plan objective related to wandering prevention. Dr. Boyle agreed to draft the proposed objectives on data collection and prevention measures and Ms. Redwood agreed to develop the Strategic Plan objective on investigating underlying causes. Ms. Singer and Ms. Redwood told the subcommittee they would work to revise the letter to the Secretary based on the day's discussion. Dr. Daniels asked to be included along with Dr. Della Hann on any emails between the members to comply with Federal Advisory Committee Act (FACA) regulations. She also reminded the subcommittee that under FACA regulations, only one representative of a Federal agency should be actively participating during IACC meetings or conference calls. Ms. Singer then reviewed the subcommittee's action items – she and Ms. Redwood would revise the letter to the Secretary and contact the IAN network for more information about submitting a safety survey. Ms. Redwood would work with Dr. Boyle to gather information about developing an International Classification of Disease (ICD) code and members of the subcommittee would develop three potential IACC Strategic Plan objectives for committee review on December 14, 2010. Ms. Singer and Ms. Redwood would set up a meeting with a member of the Department of Justice to discuss the AMBER Alert system. Dr. Daniels requested that she or Dr. Hann be included during that meeting per FACA. Ms. Redwood then discussed the possibility of issuing a Request for Information (RFI) to gather input from the autism community about safety concerns. The subcommittee noted that this could be done while simultaneously moving forward on previously identified issues (e.g., restraint and seclusion). Ms. Redwood discussed whether it would be most beneficial to have one open-ended question on safety concerns or several targeted questions. She said she would develop specific language for the RFI to present at the December 14, 2010  IACC meeting. Dr. Daniels said that she would send an email to the subcommittee outlining action items and deadlines. The meeting was then adjourned.

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Certification

The minutes of the November 9, 2010 Subcommittee on Safety meeting were approved by the Subcommittee on January 11, 2011.

We hereby certify that this meeting summary is accurate and complete.

Lyn Redwood /s/
Lyn Redwood, R.N., M.S.N.
Subcommittee on Safety Co-Chair
Alison Tepper Singer /s/
Alison Tepper Singer, M.B.A.
Subcommittee on Safety Co-Chair
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