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IACC Subcommittee on Safety Conference Call - January 12, 2011

meeting announcement Announcement
Topic Topic Description
Date: Wednesday, January 12, 2011
Time: 11:00 a.m. to 1:00 p.m. Eastern
Agenda: The subcommittee plans to discuss a draft letter to the Secretary of Health and Human Services on issues related to autism and safety, as well as plans for future activities.
Place: No in-person meeting; conference call only
Conference Call: Dial: (888) 456-0356
Access code: 1427016
Registration: No registration required
Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 8185A
Rockville, Maryland 20852
Phone: (301) 443-6040
Please Note: This conference call will be open to the public through a conference call-in number and access code. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the conference call, please e-mail or call the IACC Technical Support Help Line at (443) 680-0098.

Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting.

Conference call schedule subject to change.

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meeting agenda Agenda

No in-person meeting; conference call only. The materials for the meeting can be found here.

Time Event
11:00 a.m. Roll Call, Welcome and Introductions

Susan Daniels, Ph.D.
Office of Autism Research Coordination, NIMH, NIH
Executive Secretary, Safety Subcommittee

Sharon Lewis
Administration on Children and Families
Co-Chair, Safety Subcommittee

Lyn Redwood, R.N., M.S.N.
Coalition for SafeMinds
Co-Chair, IACC Safety Subcommittee

Alison Tepper Singer, M.B.A.
Autism Science Foundation
Co-Chair, Safety Subcommittee
11:10 a.m. Approval of Minutes from December 12, 2010
11:30 a.m. Discussion of Draft Letter to Secretary Sebelius
12:30 p.m. Discussion of RFI and Other Action Items
1:00 p.m. Adjournment

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meeting minutes Minutes

The Subcommittee on Safety held a conference call on Wednesday, January 12, 2011, from 11:00 a.m. to 1:00 p.m.

Subcommittee Members and Office of Autism Research Coordination (OARC) Staff Participating in the Teleconference:

Sharon Lewis, Co-Chair, Administration for Children and Families (ACF); 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), National Institute of Mental Health (NIMH); Gwendolyn Adam, Ph.D., Health Resources and Services Administration (HRSA) (representing Peter van Dyck, M.D., M.P.H.); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Ari Ne'eman, Autistic Self-Advocacy Network (ASAN).

Roll Call, Welcome, and Approval of the Minutes from December 12, 2010

The IACC Subcommittee on Safety convened via teleconference on January 12, 2011 to discuss the draft letter to Secretary Sebelius on wandering behavior in children with ASD. The subcommittee also discussed a potential Request for Information (RFI) soliciting information from the community about ASD-related safety concerns.

Dr. Daniels welcomed the members of the subcommittee participating in the teleconference and conducted roll call. The subcommittee members considered the minutes from their November 29, 2010 meeting and Ms. Sharon Lewis requested that they be updated to reflect that she was present but unable to be heard during much of the meeting due to technical difficulties. With this edit, the minutes were approved.

Discussion of the Draft Letter to Secretary Sebelius

Ms. Alison Singer, one of the three subcommittee co-chairs, led the group through the draft letter to the Secretary. The co-chairs – Ms. Singer, Ms. Lyn Redwood, and Ms. Lewis – had held a phone conference earlier in the week to discuss revisions that would address concerns about the recommendations raised by several subcommittee members. Based on the earlier call, Ms. Singer suggested replacing the statement that "immediate action needs to be taken to address the urgency of ASD-related wandering" with a factual account of the proceedings of the October 22, 2010 IACC meeting that led to the formation of the Subcommittee on Safety. The members of the subcommittee agreed that the revision was an improvement. Ms. Singer reviewed the first action item included in the letter that addressed the need to collect further data on ASD-related wandering. The group had no objections to the wording and moved on to review the second action item, which related to creating a medical subclassification code for ASD-related wandering. Ms. Lewis commented that the Centers for Disease Control and Prevention (CDC) had already taken action by submitting a recommendation on the issue to the ICD Coordination and Maintenance Committee and questioned whether it needed to be brought before the Secretary. She also noted that experts she had consulted had concerns that a medical subclassification would be associated with a particular treatment protocol. Ms. Redwood responded that the committee had not questioned the medical coding recommendation when it was presented by the National Autism Association (NAA) at the October meeting. She also noted that treatment protocol would be left to the professional judgment of the treating physician.

Mr. Ne'eman stated his view that the full committee was not voting to endorse specific safety recommendations when it voted to create a Safety Subcommittee. He then expressed his concerns that by applying a medical code to wandering behavior, they were acting without an adequate amount of research on the subject and risked violating the self-determination rights of individuals with ASD. Ms. Singer noted that tracking devices would not be mandatory and that medical classification would simply make the technology more accessible to families who currently do not have the means to pay for them. Mr. Ne'eman stated his concerns that tracking technology could foster abuse if used to restrict the mobility of an individual with ASD. Ms. Redwood asked if there was any evidence suggesting that tracking technology was linked to abuse and Mr. Ne'eman responded that he could envision a scenario where an abused individual would be unable to escape because of the technology. Ms. Lewis said that there was a lack of evidence to support the use of a medical subclassification and asked the recommendation in the letter be amended to "investigate" the use of such a medical subclassification.

Mr. Ne'eman noted that not enough research had been conducted on positive behavioral supports and other alternatives. Dr. Boyle suggested addressing the need for additional data separately from issues related to insurance coverage. Mr. Ne'eman recommended consulting the Services Subcommittee to get perspective on whether preventing wandering should be treated as a services issue or a medical treatment issue. Ms. Redwood noted that the Safety Subcommittee had been created specifically to address such safety issues and could act independently of the Services Subcommittee. Dr. Gwendolyn Adam asked whether a medical classification coding could be put in place to generate a detailed safety plan instead of a prescribed intervention. Mr. Ne'eman stated his objection to using any diagnostic code because it implied that wandering was a medical phenomenon without adequate evidence. The subcommittee agreed that the best course of action would be to take separate drafts of the letter before the full committee for their discussion at the meeting on January 18, 2011.

They then discussed the recommendation for an alert system, similar to the AMBER or Silver alert, for people with ASD. Ms. Lewis noted that the language she had previously seen did not accurately reflect the Federal government's role in the AMBER alert system. Ms. Singer noted that the letter had been revised to address these concerns and Ms. Lewis agreed to the new language after reviewing the revised version. Mr. Ne'eman clarified that the alert system was intended solely for children and Ms. Singer noted that the word "child" or "children" appeared throughout the recommendation. The subcommittee discussed whether the recommendation applied to "adult children" (people over 18 under legal guardianship). Mr. Ne'eman and Ms. Lewis opposed including anyone over the age of majority, while Ms. Singer and Ms. Redwood felt that the safety of adult children needed to be addressed. The subcommittee agreed to explicitly state that the recommendation was only intended to include minors, but members of the subcommittee said that they should revisit this issue in the future. The letter was revised to specify "children under the age of 18."

The subcommittee then discussed the recommendations in the letter to develop and test programs to prevent wandering incidents and to work with the Department of Education to develop policies on parental notification of wandering or fleeing incidents in school. The subcommittee agreed that Dr. Gail Houle should be consulted for input from the Department of Education. Dr. Daniels noted that due to the time constraints, it would be best to seek Dr. Houle's input at the meeting of the full IACC. Mr. Ne'eman asked that "training for individuals with disabilities" be added to the list of possible preventative programs.

The subcommittee members then discussed the action items that had resulted from their teleconference. The draft letter would be presented to the full committee at the January 18, 2011 meeting with two versions of the recommendation on medical subclassification for the committee's selection. Dr. Boyle would supply a few sentences for the letter describing the CDC submission to the ICD-9 committee. The subcommittee voted unanimously to move forward with these action items.

Discussion of Request for Information (RFI) and Other Action Items

Ms. Redwood then discussed a possible Request for Information on ASD-related safety concerns. She asked whether the subcommittee felt that the questions should match those being developed for the questionnaire distributed through the Interactive Autism Network (IAN). Ms. Lewis said she felt the same set of questions should be used and Mr. Ne'eman noted that the questions should be crafted to allow input from all stakeholders. Dr. Daniels said that the IACC would not have input into the IAN questionnaire but that the responses could be used to inform the IACC RFI. Dr. Boyle provided the questions that had been included in the National Children's Health Survey and suggested including similar items to compare responses. Ms. Redwood noted that she would delay developing questions for the RFI so that items from the IAN survey and the National Children's Health Survey could be used as reference. She proposed convening another subcommittee meeting in a month. Mr. Ne'eman suggested including questions on the RFI that related to a broader scope of safety issues including seclusion, restraint, and caregiver abuse. Ms. Redwood asked how the Services Subcommittee was currently addressing seclusion and restraint issues and Mr. Ne'eman said the group was in the process of developing recommendations to the Secretary, but that he felt the issue should be addressed by both subcommittees. Ms. Lewis noted the importance of maintaining consistency between the two groups' efforts. Dr. Daniels said that she would investigate what types of demographic information could be collected in the RFI, particularly if the information was for someone other than the respondent. The subcommittee members discussed potential dates of their next meeting and agreed that a teleconference would be best. The meeting was then adjourned.


The minutes of the Subcommittee on Safety were approved by the Subcommittee on March 16, 2011.

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

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

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