Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Conference Call on September 7, 2011
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a conference call on Wednesday, September 7, 2011 from 3:00 p.m. to 5:00 p.m.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.
Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (representing Francis Collins, M.D., Ph.D.); Judith Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) (representing James Battey, M.D., Ph.D.); Gerald Fischbach, M.D., Simons Foundation; Lee Grossman, Advance Enterprises, LLC; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Alan Guttmacher, M.D.); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke; Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.); Sharon Lewis, Administration for Children and Families (ACF); Christine McKee, J.D.; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise Resnik, Southwest Autism Research & Resource Center (SARRC); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Larry Wexler, Ed.D., U.S. Department of Education (ED) (representing Gail Houle, Ph.D.)
Call to Order and Opening Remarks
The Interagency Autism Coordinating Committee (IACC) held a conference call on September 7, 2011 to discuss and vote on a letter to Secretary of Health Kathleen Sebelius regarding the use of seclusion and restraint.1 Dr. Thomas Insel welcomed the IACC members to the conference call and noted that Ms. Laura Kavanagh would now serve as the representative for the Heath Resources and Services Administration (HRSA). Ms. Kavanagh replaces Dr. Peter van Dyck, who recently retired.
Dr. Insel noted that the proposed legislation to reauthorize the Combating Autism Act had passed through the Senate Health, Education, Labor and Pensions (HELP) committee and would now need to be voted on by the full Senate.2 There had not been any further action on the bill introduced in the House of Representatives but he said that more information should be known in the coming days. 3
Dr. Susan Daniels announced that the IACC would hold a Services Workshop on September 15, 2011 at the Bethesda Marriott – Pooks Hill.4 The meeting,"Enhancing Supports for People with Autism and Their Families: Community Integration and the Changing Delivery System," will run from 8:30 a.m. to 6:00 p.m. Members of the IACC are also encouraged to attend the NIH workshop on the Ethical, Legal, and Social Implications of Autism Research, to be held on September 26, 2011 at the Bethesda North Marriott. While the workshop is not officially sponsored by the IACC, it was inspired by an objective in the IACC Strategic Plan and is being co-sponsored by the Office of Autism Research Coordination (OARC) and the NIH Autism Coordinating Committee (ACC).
Dr. Daniels then announced that the committee members would soon receive their ballots for the mid-year selections for the Summary of Advances. She also noted that only members present on the call would be able to vote on the letter to Secretary Sebelius.
Review and Approval of the July 11, 2011 and July 19, 2011 minutes
The committee then voted to approve the minutes from the July 19, 2011 full committee meeting and the July 11, 2011 joint subcommittee conference call, after correcting the participant list on the July 19th minutes.
Discussion of the Letter to the Secretary
The committee then began discussing the draft letter to the Secretary. An earlier version of the letter had been presented at the July 19th meeting and the committee had chosen to make additional edits pending further discussion with the Department of Education. The revised letter had been sent to the committee members for their review prior to the meeting.
Ms. Denise Resnik said she felt the letter was excellent and Dr. Gerald Fischbach echoed her support, noting that the letter qualified the use of restraint well. Dr. Larry Wexler noted that he would read a statement from the Department of Education prior to the vote on the letter. Dr. Insel recommended modifying language in the letter to address some of the Federal members' discomfort with appearing to lobby for specific legislation. He recommended changing the statement "Members of the IACC support Federal legislation that would require States to establish minimum standards for schools..." to read "Proposed Federal legislation would require states to establish minimum standards for schools..." This sentence followed a statement that legislation is urgently needed to ensure the safety of all students and staff.
Ms. Redwood asked whether the sentence was allowable as it currently appeared in the letter and Dr. Daniels said that, while allowable, many of the Federal members were uncomfortable with the appearance of supporting specific legislation. Ms. Redwood then asked whether the sentence could be modified to state that public members of the IACC support Federal legislation on restraint and seclusion. Dr. Insel noted that this wording implied that Federal members did not support legislation. Dr. Koroshetz said that Dr. Insel's proposed changes did not change the substance; it simply removed the conflict for Federal members. Mr. Grossman said that changing the sentence from an action statement to a statement of fact weakened the impact and Ms. Ellen Blackwell suggested replacing Federal legislation with "proposals." This was dismissed as weakening the statement further. Ms. Sharon Lewis stated her support for Dr. Insel's proposed wording and said it set a good precedent for navigating the issue in the future. Ms. Redwood said she wanted the committee to be sensitive that the primary take-away message from the IACC workshop on restraint and seclusion was that Federal legislation was needed.
Dr. Cindy Lawler said she would like to hear the Department of Education's statement prior to voting and Dr. Boyle noted that the previous vote had been postponed to hear their input. Dr. Wexler said he would refrain from reading the statement until the vote but that Education's concerns related to advocating support of legislation that will come before Congress. Ms. Singer asked whether the agency's concerns had been addressed with the revised language. Dr. Wexler said that he would defer to his later statement.
Dr. Insel asked about the addition of language on the Civil Rights Data Collection Survey conducted by the Department of Education's Office for Civil Rights.5 Dr. Wexler said that, as stated in the letter, data on seclusion and restraint is expected to be available later this year. He noted, however, that the validity of data in the first collection of any survey is often fairly weak. Ms. Singer asked whether the data would focus solely on death and serious injury or would include broader data on all incidents. Ms. Lewis, who had knowledge of the survey, said that data would include individual incidents and would serve as the best information on restraint and seclusion to date. While it may take several years to generate good consistency and validity, she said that the data would include important demographic information such as age, ethnicity, and disability. She noted that the biggest pitfall was that the survey would not include smaller school districts.
Dr. Insel asked if the IACC should wait to recommend promulgating regulations until the data is collected and Ms. Lewis noted that the Civil Rights Data Collection would be limited to the education system, but that the Department of Health and Human Services (HHS) had already collected data to support their previous activities. She said that members of the committee had expressed interest in exploring opportunities within existing statutes and regulations for reducing use of seclusion and restraint and increasing consistency across settings. For example, HHS has never issued a final rule on the use of seclusion and restraint. Dr. Insel asked why the Center for Medicare & Medicaid (CMS) had not finalized the interim final rule that has been in place for over a decade. Ms. Blackwell said that she could not cite the reason but offered that it might have been related to views of leadership in place at that time.
Dr. Insel then engaged the committee in a discussion of the unintended consequences that might arise from the IACC recommendations. Examples of unintended consequences might include burdensome expenses from the increased reporting requirement or less willingness for programs to take students with more challenging behavioral issues because of the increased level of reporting required. Dr. Wexler said that they always consider the possibility of data burden but that there is rarely a major problem. He said that data collection issues often result from inconsistencies in the data collected between school districts.
Ms. Singer noted that one unintended consequence could be that some staff would refuse to work with children who do not have a restraint provision in their Individualized Education Program (IEP). She said that the provisions are often cited as a measure to protect staff. Ms. Lewis noted that untrained staff are more likely to be injured and that injuries to both staff and students are more likely when policies have not been put in place. Because of this, Education Secretary Arne Duncan wrote a letter to Chief State School Officers advising them to have policies and guidance on restraint and seclusion in place.6
Ms. Singer noted that students may be kept out of class if they refuse to accept the use of restraint. Ms. Lewis said that based on anecdotal evidence, many families had been pressured into consenting to the use of restraint to remain in school. Without Federal legislation, there is no protection for either the children or the schools, she said. The Department of Education, with input from the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Administration on Developmental Disabilities (ADD), is in the process of developing a principles document that will provide additional guidance to schools. Ms. Lewis said that SAMHSA would be the most equipped to identify unintended consequences and that they were in support of the letter.
Dr. Koroshetz noted that the letter to the Secretary did not include mention of the guidance document being prepared and Ms. Lewis said that the Department of Education did not wish to comment on these activities in the letter. Dr. Insel noted that the letter mentioned coordination between HHS and the Department of Education more generally.
Dr. Koroshetz asked whether the letter placed too much emphasis on the regulation of restraint and not enough emphasis on the means to reduce restraint (staff education, debriefing after an incident, and the appropriate use of restraint). Dr. Insel said that the letter was a good balance and included mention of Positive Behavioral Interventions and Support (PBIS). He also noted that the letter gave a comprehensive look at the issue of restraint and seclusion, citing the Cochrane Collaboration's conclusion that there was no evidence of benefit or harm from seclusion and restraint, noting that more data were needed.
Ms. Singer recommended modifying the paragraph on data collection to clarify that collaboration between agencies to improve data collection and reporting was still necessary. The inclusion of the information about the Civil Rights Data Collection might give the impression that this need had been fulfilled, she said. Dr. Wexler noted that the survey would not include an analysis of outcomes and would only include data from public schools. The committee discussed the issue and decided to add a sentence stating that "While the Civil Rights Data Collection will be helpful, additional data collection and coordination are needed."
Ms. McKee said that, speaking as a parent of a child with ASD, the IACC's message was extremely important. Ms. Blackwell noted that the workshop that initially gave rise to the letter was an important resource and urged everyone to visit the IACC website to review the materials.7
Committee Vote on the Letter to the Secretary
Dr. Daniels then reviewed the changes to the letter agreed upon by the committee and took a vote. The letter was unanimously approved by members who were on the call with one abstention from the Department of Education. Dr. Wexler read a prepared statement explaining their position:
"Because the U.S. Department of Education is working collaboratively with the Department of Health and Human Services on matters related to the subject of this letter, the Education representative abstains from participating in the recommendations contained in this letter. One collaborative effort is a resource document that is being developed jointly by Education and SAMHSA that describes principles to help ensure all schools and learning environments are safe for all children and adults. Education will also work with SAMHSA and other entities to bring people and resources together to further explore what additional assistance and support can be developed."
Closing comments and adjournment
With the letter finalized, Dr. Insel said it would be sent on to Secretary Sebelius. He noted that he would keep the committee members updated on the progress of the reauthorization. With that, the meeting adjourned.
These minutes of the IACC Full Committee were approved by the Committee on September 23, 2011.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee