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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Conference Call and Webinar on November 27, 2012

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy (also referred to as "the subcommittee") convened a conference call and webinar on Tuesday, November 27, 2012, from 11:06 a.m. to 12:31 p.m. Eastern.

David S. Mandell, Sc.D., Co-Chair, Subcommittee for Services Research and Policy, and Denise Dougherty, Ph.D., Co-Chair, Subcommittee for Services Research and Policy, chaired the meeting.

Participants:

Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC); Denise Dougherty, Ph.D., Co-Chair, Subcommittee for Services Research and Policy, Agency for Healthcare Research and Quality (AHRQ); David S. Mandell, Sc.D., Co-Chair, Subcommittee for Services Research and Policy, University of Pennsylvania School of Medicine; Idil Abdull, Somali American Autism Foundation; James Ball, Ed.D., BCBA-D, JB Autism Consulting and Autism Society; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); John P. O'Brien, M.A., Centers for Medicare & Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC); Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)

Roll Call and Opening Remarks

The IACC Subcommittee for Services Research and Policy held a telephone conference call and webinar on Tuesday, November 27, 2012, to discuss and vote on draft updates for Chapters 5 and 6 of the 2012 IACC Strategic Plan, which cover services and lifespan issues. The updates describe recent progress in the autism field as well as research gaps that have emerged since the previously released 2011 Strategic Plan.

Dr. Susan Daniels welcomed subcommittee members and the public to the meeting. She announced an upcoming IACC full Committee meeting on December 18, 2012, by teleconference and an in-person public comment period at the National Institutes of Health (NIH) that will be webcast live. She also announced a future in-person meeting of the full Committee on Tuesday, January 29, 2013, in Bethesda, Maryland, at the Natcher Center. Dr. Daniels conducted roll call.

Dr. Thomas Insel welcomed participants and noted that the draft update chapters would need to be completed before the December 18 meeting so that the Committee could vote on them at that time. In addition, the 2012 Strategic Plan document would need to be ready to submit to Congress before the end of December. He said that the day's goal would be to ensure that the document captures what the subcommittee wants to present to the full Committee in December. He emphasized that the document's focus should be on breakthroughs that have occurred in research or changes in policy since January 2011 that impact the science of autism and research gaps that may have emerged during this period. He also commented that, during the November 26 teleconference to discuss Questions 1, 2, 3, 4, and 7, it became clear while talking about the biology of autism that some of the most important breakthroughs are not directly about autism; rather, the breakthroughs are about other biomedical research. Dr. Insel emphasized that it would be important to think beyond the autism literature to see what has happened broadly that has become relevant or that could become more relevant to autism research.

Dr. David Mandell said that the task for the day would be to determine the key updates based on the research that has emerged since the last Strategic Plan update. The drafts for Chapter 5 and Chapter 6 incorporate the new findings in a way that begins to hint at some of the items they might like to see expanded or changed in the next version of the Strategic Plan. He outlined the process of discussing each draft and then voting on the changes.

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Discussion of Question 5 Update: Services

After a quick review of the organization of this question, Dr. Mandell asked if there were any questions or comments. Dr. Insel suggested that in the first paragraph under access and payment, it might be better to provide an absolute number that matches the percentage of children with autism spectrum disorder (ASD) who received Medicaid-reimbursed services; members of the subcommittee agreed that this would be useful.

Ms. Idil Abdull asked if it was known what early intervention services different States cover through Medicaid. She noted that some States pay for early intervention services such as applied behavior analysis (ABA) or floor time either by having the 1915(c) Medicaid waiver or an autism-specific waiver. Dr. Mandell said that nine States have autism-specific waivers and many more States have waivers that are not specific to autism but cover autism as a target group. He said he is unsure if there is any published research that looks at whether there are behavioral interventions specific to autism that are covered in those non-autism-specific waivers that cover autism as a target group, which would make this a gap. Mr. John O'Brien said that there is a document in progress that should be available sometime next year analyzing State coverage, and he will try to gather some of this information from the work on this document for the subcommittee. Dr. Insel then suggested that references to any papers listed as "in press" in the document be updated if the full citation is available prior to publication, and the Subcommittee members agreed.

Ms. Lyn Redwood asked whether the "or" could be changed to "and" in the third full paragraph on page 3 in the sentence that reads as follows: "Findings regarding wandering/elopement suggest the urgent need to develop and test specific interventions to improve safety for individuals with autism, either by directly intervening with the individual, or indirectly, through training of first responders." Subcommittee members agreed to delete the word "either" and change "or" to "and."

Ms. Alison Tepper Singer asked if, in the same paragraph, "through training of first responders, and the broader community" could be added at the end of the sentence so that that it would encompass the efforts to establish a system similar to the Amber Alert for children with autism who may have wandered away from responsible adults or caregivers. Dr. Mandell suggested the following text: "by directly intervening with the individual and indirectly through training the first responders, health care professionals, educators, and the broader community." Subcommittee members agreed to change this text.

Subcommittee members discussed mentioning the new international classification of diseases (ICD-9) code for wandering and elopement in the text because of its value in collecting data about wandering/elopement and its possible utility for surveillance. Dr. Mandell reminded subcommittee members that the updates are supposed to be about research findings or suggestions for the need for more research—not services updates. However, the subcommittee agreed that it should be included because this code is new, the IACC is invested in it, and it has the potential to be used to enable research on wandering/elopement. Ms. Singer agreed to draft a sentence stating that the new ICD-9 code will help in tracking the incidence of wandering for research purposes. Dr. Cathy Rice noted that the code was established in response to community concerns and was informed by the preliminary data that were shared with the IACC. Dr. Rice and Ms. Singer agreed to work together to develop this material.

In addition, because research shows that many children with autism wander, subcommittee members noted that it would be helpful to understand how wandering can be prevented. Additional research on effective prevention and intervention needs to be conducted, while also considering concerns about individuals' civil rights and the feasibility of implementing strategies to keep children safe. Dr. Denise Dougherty and Ms. Laura Kavanagh suggested the following language: "Findings regarding wandering/elopement suggest the urgent need to develop and test specific prevention strategies and interventions to improve safety for individuals with autism."

Dr. Sally Burton-Hoyle commented that the importance of readability and accessibility of materials was emphasized among the experts for the family support planning group. Mr. Scott Michael Robertson asked if, in the family support area on page 2, more specifics could be provided regarding the term "excessive caregiver burden," as reflected in the British paper, because the term "burden" can be associated with a negative perception of people with autism. Dr. Mandell said he would revisit that paper and clarify this issue. Dr. Insel noted that even if that is the language that is used in the paper, it may be a good idea to find a different way to describe it.

Subcommittee members noted that more research is needed on how to reduce family burden and increase family support for those who are caring for children with autism. Dr. Mandell said he would argue that the research needs to move toward understanding the extent to which specific interventions and supports reduce family and societal costs. Ms. Abdull said that we need to know how to help families so they can avoid getting secondary chronic health conditions that add to the burden. Dr. Insel remarked that there is material on this already in the 2011 version of the Strategic Plan. Ms. Singer proposed that the IACC write a service delivery plan that is parallel to the services research plan. She said it also seems like the next logical step after updating the research would be to provide a roadmap for how lessons learned from research can inform service delivery. Dr. Insel asked Ms. Singer to raise this point during the December IACC meeting so that the full Committee can have a conversation regarding how to proceed in this area next year.

Ms. Redwood noted that to be more prescriptive, on page 3, the first full paragraph should read "Quality measures should be developed" instead of "Quality measures can be developed." At the end of that same paragraph, she also recommended changing "may be required" to "will be required" in the last sentence.

Dr. Daniels reviewed the proposed changes:

  • On page 1 in the first paragraph under access and payment, Dr. Mandell will provide an absolute number that matches the percentage of children with ASD who received Medicaid-reimbursed services.
  • Subcommittee members agreed that citations for papers listed as "in press" be updated prior to publication if more specific citation information is available.
  • On page 3, in the third full paragraph (gaps), delete the word "either" and change "or" to "and" as well as add "prevention strategies and interventions" in place of "interventions in this sentence: "Findings regarding wandering/elopement suggest the urgent need to develop and test specific interventions to improve safety for individuals with autism, either by directly intervening with the individual, or indirectly, through training of first responders, health care professionals, educators, and the broader community."
  • On page 2, in the wandering/elopement section, Dr. Rice and Ms. Singer will provide language regarding the ICD-9 code.
  • On page 2 in the section on family support, Dr. Mandell will clarify the language about excessive caregiver burden.
  • Ms. Redwood noted that to be more prescriptive, on page 3, the first full paragraph should read "Quality measures should be developed," instead of "Quality measures can be developed." Also, in the last sentence of that paragraph, "may be required" will be changed to "will be required."

A vote was taken. The subcommittee voted unanimously to finalize Question 5 with the agreed-upon changes for submission to the full Committee.

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Discussion of Question 6 Update: Lifespan Issues

Dr. Mandell began by saying that they attempted to take the planning group's work on adult issues and place it in the context of the update, covering the categories of diagnosis, epidemiology, quality of life and functional outcomes, and service use. They worked to highlight gaps related to those categories. He said that the gaps section is not long—and many gaps already have been highlighted—but there is some new research in many areas worth noting.

Dr. James Ball mentioned a typographical error in the second paragraph, second line, of the first page, which should read "only one instrument." Dr. Burton-Hoyle said that at the top of page 2, on the first line, the comma after "(2012)" should be deleted and the word "which" should be deleted. She also noted that, under service use on the seventh line, "important" should be changed to "importance."

Mr. Robertson asked if there were a way to significantly rephrase the sentence about sheltered workshops at the bottom of page 1. He said that, in 2012, Cimera and colleagues found that the most common strategy of sheltered workshops for enhancing employment outcomes for adults with ASD does not increase the probability of employment, despite greater expense.1  He added that there are several problems in this sentence, including the fact that he would not consider a sheltered workshop a strategy but rather a non-recommended setting in terms of problems with abuse, neglect, and pain as well as the inability to transition to competitive employment. Dr. Mandell said that the use of the word "strategy" was not meant to imply any value or judgment, but it is the most common way people with autism are served through the U.S. Rehabilitation Services Administration. Mr. Robertson suggested stating that although sheltered workshops are commonly used, there are no research data to support that use. He proposed language along the lines of the following: "Cimera and colleagues found that sheltered workshops, the most commonly used approach for employment for adults with ASD, do not increase the probability of employment...." Subcommittee members agreed with this change.

Dr. Dougherty said that under "Service Use" on page 2, in the third line down, it is not clear what is meant by "functional therapies." Dr. Mandell said he would add material to provide clarification. Dr. Rice asked if, in the section on diagnosis of ASD in adults, it could be specified to indicate which of the four instruments was the one tested in the community sample: "But only one instrument was tested in an unselected community sample." Subcommittee members agreed that this information would be provided.

Dr. Dougherty cited disparities in the adult population as a gap that may warrant further research. Subcommittee members agreed that although it is important to know about disparities when conducting research, the focus should be on how to close disparity-related gaps. Dr. Mandell suggested adding the following sentence under gaps: "More recent community studies have highlighted disparities in services and outcomes among adults, similar to what has been found in children, highlighting the need or suggesting the need for interventions to reduce disparities in this age group as well." Mr. O'Brien asked, under epidemiology in gaps, what was meant regarding individuals with ASD being "socially disadvantaged." Dr. Mandell said he would clarify that language and add detail indicating that the data come from a United Kingdom (U.K.) sample.

Subcommittee members discussed the subject of adults with autism and quality of life/functional outcomes—particularly the subject of whether nonverbal autism/communication in adults should be addressed as a gap. Ms. Abdull noted that research is needed that would enhance quality of life by ensuring that the necessary communication tools are available. Dr. Mandell suggested that more research is needed on people with autism who communicate in nontraditional ways. Subcommittee members discussed the use of the term "nonverbal" and decided to instead use the language "research to improve functional outcomes and communication among adults with greater support needs" under gaps.

Subcommittee members discussed the lack of research in the area of people with autism and the criminal justice system. Ms. Redwood asked if any specific recommendation could be included from the Lerner study cited in the current draft regarding this issue.2 Dr. Mandell said he would review the recommendations in that article to determine if there are some that are germane. He said that for the next update, there are three or four articles currently under review for publication that present data about the intersection of the criminal justice system and people with autism. Dr. Rice noted a published paper on children from South Carolina that considers this issue among children and adolescents.3 Mr. Robertson said it would be helpful to stress that there is insufficient research on autistic people in the criminal justice system or on victims of crime who are autistic (without implying an association). Subcommittee members agreed to add a statement describing this latter issue as well.

The subcommittee discussed whether the provision of student support during the transition from high school to college is a research need. Ms. Abdull noted that for adults with ASD, transition from high school to college is not mentioned. Dr. Mandell remarked that this could be mentioned in the gaps, given the high prevalence of ASD among college students and the need to support those students transitioning from high school to college. Dr. Insel said that although there is value in talking about adults who have greater support needs and community-based intervention research, it is more of a service need rather than a scientific/research question. He also remarked that it would be better not to be too specific here because inevitably there would be omissions; rather, this issue would align well with a services provision roadmap along the lines of what Ms. Singer proposed earlier in the discussion. Subcommittee members agreed with this suggestion.

With regard to the gaps section under Question 6, Mr. Robertson commented on the sentence toward the bottom of page 2 that reads, "Again, this review points to the critical lack of tested interventions for adolescents and young adults to address core symptom or functional domains." He wondered if the phrase "core symptom or functional domains" could be more clearly defined. Dr. Mandell said that "core symptom domains" refers to communication, social ability, and repetitive behaviors. The term "functional domains" refers to the extent to which problems in those areas affect functioning. Dr. Mandell said he would elaborate on this to further define the terms.

Dr. Daniels reviewed the proposed changes:

  • Page 1, second paragraph, second line has text that should read "only one instrument." At the top of page 2, on the first line, the comma after "(2012)" should be deleted, and the word "which" should be deleted. Under service use, on the seventh line, change "important" to "importance."
  • At the bottom of page 1, regarding sheltered workshops, language would be changed along the following lines: "Cimera and colleagues found that sheltered workshops, the most commonly used approach for employment of adults with ASD, do not increase the probability of employment…." (The word "approach" is used instead of "strategy.")
  • Dr. Mandell said he would add material to provide clarification about functional therapies under "Service Use" on page 2, third line down.
  • In the section on diagnosis of ASD in adults, the subcommittee will specify which of the four instruments was the one tested in the community sample.
  • Dr. Mandell suggested adding the following sentence under gaps: "More recent community studies have highlighted disparities in services and outcomes among adults, similar to what has been found in children, highlighting the need or suggesting the need for interventions to reduce disparities in this age group as well."
  • Mr. O'Brien asked, under epidemiology in gaps, what was meant regarding individuals with ASD being considerably socially disadvantaged; Dr. Mandell said he would clarify that language and add that it is a U.K. sample.
  • Subcommittee members discussed the use of the term "nonverbal" and decided to use instead the text "research to improve functional outcomes and communication among adults with greater support needs" under gaps.
  • Dr. Mandell said he would look at the recommendations in the Lerner article and see if there are some that are germane (in the area of criminal justice).
  • Subcommittee members agreed to add a statement to stress that there is insufficient research on autistic people in the criminal justice system or on victims of crime who are autistic (without implying an association).
  • Regarding the sentence toward the bottom of page 2 that reads "Again, this review points to the critical lack of tested interventions for adolescents and young adults to address core symptom or functional domains," Dr. Mandell said he would elaborate on the language involving "core symptom or functional domains." 

A vote was taken. The subcommittee voted unanimously to finalize Question 6 with these changes for submission to the full Committee.

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Wrap-up and Next Steps

Dr. Daniels said that an annotated copy showing where changes were requested will be provided to subcommittee members to facilitate Dr. Mandell's and Dr. Dougherty's completion of the edits in consultation with other members as needed. The edits would be due by Monday, December 3, and the full Committee would meet on December 18 by teleconference to review the draft and vote.

Dr. Insel and Ms. Singer thanked the subcommittee chairs and members for the excellent and comprehensive writing that was clearly done with the stakeholder audience in mind. Dr. Daniels remarked that OARC staff would edit and format the document so that it would be integrated with the work of the other Subcommittee by December 18. Subcommittee members would have an opportunity to review the document again before December 18.

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Adjournment

The meeting was adjourned at 12:31 p.m.

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Certification

These minutes of the IACC Subcommittee for Services Research and Policy were approved by the Subcommittee on March 8, 2013.

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

Denise Dougherty /s/
Denise Dougherty, Ph.D.
Services Research and Policy Subcommittee Co-Chair
David Mandell /s/
David Mandell, Sc.D.
Services Research and Policy Subcommittee Co-Chair
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References

1 Cimera RE, Wehman P, West M, Burgess S. Do sheltered workshops enhance employment outcomes for adults with autism spectrum disorder? Autism. 2012 Jan;16(1):87-94. [PMID: 21610189]

2 Lerner MD, Haque OS, Northrup EC, Lawer L, Bursztajn HJ. Emerging perspectives on adolescents and young adults with high-functioning autism spectrum disorders, violence, and criminal law. J Am Acad Psychiatry Law. 2012;40(2):177-90. [PMID: 22635288]

3 Cheely CA, Carpenter LA, Letourneau EJ, Nicholas JS, Charles J, King LB. The prevalence of youth with autism spectrum disorders in the criminal justice system. J Autism Dev Disord. 2012 Sep;42(9):1856-62. [PMID: 22187108]

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