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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety Conference Call on March 16, 2011

The Subcommittee on Safety held a conference call on Wednesday, March 16, 2011, from 9:00 a.m. to 10:30 a.m.

Teleconference Participants: 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; Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Lee Grossman, Autism Society; Ari Ne'eman, Autistic Self-Advocacy Network (ASAN); Peter van Dyck, M.D., Health Resources and Services Administration (HRSA)

Welcome, Roll Call, and Approval of Minutes

The IACC Subcommittee on Safety met to hear updates on the letter sent to Secretary Sebelius on wandering behavior in children with ASD. They were also updated on the progress establishing a medical code for such wandering behavior. Finally, they talked at length about addressing the use of seclusion and restraint. Dr. Susan Daniels welcomed the members of the subcommittee to the teleconference and conducted roll call. The subcommittee members then approved the minutes from their previous meeting on January 12, 2011.

Update on the Letter Sent to Secretary Sebelius

Dr. Daniels updated the subcommittee on the progress of the letter to the Secretary since they last met. The letter was approved by the full committee at the January 18, 2011 meeting with recommendations for minor revisions. The finalized version was then sent to the Secretary on February 9, 2011 and the subcommittee awaits her response. Co-chair Alison Singer asked if they could expect the response to arrive prior to the next IACC meeting on April 11, 2011. Dr. Daniels noted that this could reasonably be expected because of the Department of Health and Human Services (HHS) requirements dictating response time.  When questioned about how the response letter would be received, Dr. Daniels said it would arrive through the Office of Autism Research Coordination and would be posted on the IACC website for public access. She noted that the original letter was available in that day's meeting materials.

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Update on the Proposed Medical Code for ASD-Related Wandering

Dr. Coleen Boyle then updated the committee on the wandering code proposal that had been submitted to the International Classification of Diseases (ICD-9) Coordinating and Maintenance Committee for their meeting on March 9-10, 2011. The code would facilitate data collection on ASD-related wandering. Dr. Boyle said that the committee's discussion of the code had been very technical and ultimately its inclusion would depend upon how well it fit within the classification concept and whether it could be assigned based on information available in medical records. Dr. Boyle summarized that she had acted quickly to submit the proposal because of the January 2011 deadline for the last round of submissions for the ICD-9 update and that they had adhered to the standard process used by all submitters.

Mr. Ari Ne'eman asked when the coding proposals were made available to the public and Dr. Boyle said they were posted to the web shortly before the meeting. Dr. Daniels noted that a link to the ICD-9 Coordination and Maintenance Committee website was available on the IACC website under the “Non-IACC Meetings and Events” tab. Members of the public would be able to comment on the proposals by writing to committee co-chair Dr. Donna Pickett until April 1, 2011. Ms. Lyn Redwood, co-chair, thanked Dr. Boyle for her quick action in attempting to establish a code for ASD-related wandering.

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Update on IAN Wandering Survey

Ms. Singer then provided an update on the wandering survey sent out to families in the Interactive Autism Network (IAN). The survey, being jointly funded by the Autism Research Institute (ARI), the Autism Science Foundation (ASF), Autism Speaks, and the Global Autism Consortium, will collect data on wandering and elopement behavior from a portion of IAN's 36,000 registered users. The survey will seek to address how often wandering occurs, which individuals are most at risk, and what can be done to protect individuals with ASD and support their families. All families will be encouraged to participate in the survey regardless of whether their child has the tendency to wander. IAN is overseen by a team at the Kennedy Krieger Institute in Baltimore. Ms. Singer said that the survey would likely launch at the end of the month and preliminary data would be available soon after.

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Discussion on Seclusion and Restraint

The subcommittee then discussed how to address the issue of seclusion and restraint. Ms. Sharon Lewis, co-chair, said she hoped the subcommittee could turn their attention to this issue and noted that while the Children's Health Act of 2000 has specific regulations on the use of seclusion and restraint, they only apply to certain facilities. Federal legislation on seclusion and restraint is expected to be reintroduced in the current Congress and the Department of Education has begun collecting data on the use of restraint and seclusion in school settings. Noting that the Services Subcommittee had addressed restraint and seclusion in their November 2011 workshop and had discussed the possibility of developing ensuing recommendations, Mr. Grossman asked Ms. Lewis if she felt the IACC could make recommendations that would go beyond the current legislative efforts. Ms. Lewis suggested hearing updates from the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Centers for Medicare & Medicaid (CMS) on any efforts to develop additional regulations based on the Children's Health Act. She also suggested hearing updates from the Department of Education, noting that they currently do not have the authority to regulate seclusion and restraint in schools and may be interested in pursuing federal legislation. Absent federal regulation, Ms. Lewis said the Department of Education is limited to collecting data from the states and providing guidance.

Mr. Ne'eman asked if the Medicaid funding going to schools could be used as leverage to control actions in the school system. Ms. Lewis said that it would be difficult to pursue this angle, in part because studies have shown that seclusion and restraint is most effectively managed when done systematically, unlike Medicaid which bills by the individual. She pointed out that similar inconsistency exists with the Children's Health Act because it applies only to entities that receive funds under the Public Health Service Act. She also noted that anecdotally, in the past simply holding hearings raised public awareness of the issue and encouraged some to define policies consistent with best practices.

Ms. Redwood asked whether the IACC could establish a task force to address restraint and seclusion and was told that they could call temporary working groups that could include people outside the committee, but that this type of process could be time-consuming. Ms. Redwood proposed that they hear updates on the data collected by the Department of Education at the April IACC meeting. Mr. Grossman said that the Autism Society had collected data from many states which could be used to develop a white paper on the topic. He noted that the use of seclusion and restraint had not decreased in the majority of states. Mr. Ne'eman suggested sending a letter to Secretary Sebelius requesting that the Elementary and Secondary Education Act include a comprehensive effort to stop restraint and seclusion.

Ms. Singer recommended identifying the power structure of the entities with control over the issue. In doing so, they could identify a targeted approach to bring about change. Ms. Lewis noted that this would not be a simple process because of the different regulations that vary by setting and the type of federal funds being used. Ms. Singer said that in the past, many had found it difficult to take action because of the complexity of the system and the myriad of issues involved. She suggested focusing on one or two areas where the subcommittee could affect real change. Ms. Lewis suggested starting by gaining a better understanding of the Department of Education's activities to address seclusion and restraint in schools. The subcommittee could then determine whether there would be an opportunity to work collaboratively on guidance to the states.

When asked whether Dr. Gail Houle could give a report on the Department of Education activities at the April 11, 2011 meeting, Dr. Daniels noted that there would not be enough time on the agenda and suggested calling another subcommittee meeting to hear from the Department of Education, the Substance Abuse and Mental Health Services Administration (SAMHSA), and the Health Resources and Services Administration (HRSA). Mr. Grossman suggested inviting the Centers for Medicare & Medicaid Services (CMS), as well. The subcommittee discussed the merits of waiting to speak to the full committee until after they were up-to-date on the landscape and the current data.

Mr. Ne'eman asked if another Services Subcommittee meeting could be held before April 11 and was told that under the regulations of the Federal Advisory Committee Act (FACA), announcements for FACA meetings must be submitted to the Federal Register 30 days prior to the event. Ms. Singer asked if the activities scheduled on the agenda could be reworked to allow time to hear from the Department of Education, particularly if representatives from Health and Human Services were going to be present at the meeting. She also suggested potentially hearing public comment from the Carey family, whose son's death had been profiled in the Government Accountability Office (GAO) report on the use of restraint and seclusion. Ms. Redwood noted that a task force would include stakeholders like the Carey families and multiple advocacy organizations. She recommended that the subcommittee ask the full committee for permission to form such a task force and pursue inquiries about how the Children's Health Act has been implemented. Ms. Lewis said that Dr. Larke Huang of SAMHSA would be most knowledgeable on the subject and that Dr. Gail Houle and Dr. Alexa Posny could both provide information about the Department of Education's activities. The Safety Subcommittee would have a chance to update the committee on their activities at the April 11 meeting.

Ms. Lewis asked what actions the Services Subcommittee had taken to address restraint and seclusion and suggested holding a joint meeting. The subcommittee members agreed to the idea and Mr. Grossman noted that while they were addressing the use of restraint and seclusion for school-aged children, it would also be important to consider adults as well. Mr. Ne'eman asked whether the National Core Indicators Project or the University Centers of Excellence in Developmental Disabilities Education, Research, & Service (UCEDD) Network included data on seclusion and restraint and Ms. Lewis said that she did not believe any systematic data collection was taking place.

Ms. Singer expressed frustration that they were not bringing their conversation about restraint and seclusion before the full committee at the April 11 meeting, stating it was a lost opportunity. Dr. Daniels noted that in the past, issues brought before the committee that had not been thoroughly discussed by the subcommittee prior to presentation at full committee were not ultimately as successful. Ms. Singer noted that while they were not ready to make recommendations on the subject, they should use the presence of HHS officials at the meeting as an opportunity to gather information from the Department of Education in front of a high-profile audience. Ms. Lewis noted that she did not believe the Department of Education had developed a report on the information they sought and that gathering the information and completing the clearance process would probably not be feasible in the short amount of time before the meeting. She recommended allowing more time for a thorough presentation and longer conversation among the members than what would be possible at the April meeting.

Ms. Redwood suggested using the April meeting to propose creating a task force to develop a white paper. The subcommittee discussed corresponding by email to generate more ideas about who would serve on such a task force/working group. Ms. Lewis questioned whether a working group of outside advisors was truly needed or whether they as a group could gather the necessary information at a topic-focused meeting. Mr. Ne'eman said he too was cautious about delegating responsibility to an outside group when they had the necessary expertise within the IACC. Ms. Singer again requested that the subcommittee attempt to develop a few recommendations to share before the committee at the April meeting. Members of the subcommittee said they empathized with her frustration that the process could not be accelerated, but that more time would be needed to develop careful and considered suggestions. The subcommittee agreed to hold a joint meeting with the Services Subcommittee focused solely on restraint and seclusion.

Dr. Daniels noted that the procedures required to form a working group could slow the process and suggested instead inviting the members of the public they wished to hear from as speakers to the meeting. Dr. Daniels clarified that members of the public could always be invited as speakers for in-person meetings.   Ms. Ne'eman requested that the issue of chemical restraint be addressed at the joint meeting as well. Mr. Grossman noted that the Autism Society had already developed a set of recommendations on the use of restraint and seclusion which he could bring forward.

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Report on the National Survey of Children's Health

Dr. Peter van Dyck then gave a quick overview of the National Survey of Children's Health, which asks about 100,000 families in the United States questions about the physical and emotional health of their children. The survey was previously conducted in 2003 and 2007; the 2011 survey is currently underway. One of the surprising findings from the study launched in 2007 was that 40 percent of children that had ever been diagnosed with ASD had reportedly lost their diagnosis. To delve further into this finding, the survey will now include questions about the age of first diagnosis, the type of professional (if any) making the diagnosis, the suspected reasons the diagnosis was lost, treatments and interventions used, and whether the change in diagnosis was made by a doctor. Mr. Ne'eman asked if any questions on the survey addressed whether adults with ASD were still receiving special education or accessing other services and supports. Dr. van Dyck said that the survey collected data on this issue.

Ms. Redwood asked if any questions about autism and wandering behavior were included in this survey and after discussion, the subcommittee concluded that these items would be included on HRSA's National Survey of Children with Special Health Care Needs. They agreed to follow-up with Dr. Boyle to confirm. Having reached the end of the meeting time, the members agreed to address the issues of chemical restraint and caregiver abuse at their next meeting. They would also defer their discussion on how to best coordinate with the Services Subcommittee to a later date. Dr. Daniels stated that she would send an email to the Safety and Services Subcommittee members to determine a date for their joint meeting on restraint and seclusion and to collect ideas on speakers and topics. The meeting was then adjourned.

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Certification

The minutes of the Subcommittee on Safety were approved by the Subcommittee on May 19, 2011.

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

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