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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Conference Call on March 8, 2013

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy convened a teleconference on Friday, March 8, 2013, from 2:00 p.m. to 5:05 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Denise Dougherty, Ph.D., Co-Chair, and David S. Mandell, Sc.D., Co-Chair, presided.

Participants:

Denise Dougherty, Ph.D., SRP Subcommittee Co-Chair, Agency for Healthcare Research and Quality (AHRQ); David S. Mandell, Sc.D., SRP Subcommittee Co-Chair, University of Pennsylvania School of Medicine; Thomas Insel, M.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, NIMH; Idil Abdull, Somali American Autism Foundation; Anshu Batra, M.D., Our Special Kids; Jose Cordero, M.D., M.P.H., University of Puerto Rico; Jan Crandy, Nevada State Autism Treatment; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); John 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) (representing Coleen Boyle, Ph.D.); Scott Michael Robertson, M.H.C.I., Autistic Self Advocacy Network; Larry Wexler, Ed.D., U.S. Department of Education

Roll Call and Opening Remarks

Dr. Susan Daniels welcomed Subcommittee and Committee members and members of the public to the conference call. Co-Chairs Dr. David Mandell and Dr. Denise Dougherty welcomed participants and listeners. Dr. Daniels called roll. Dr. Mandell reviewed the two major tasks for this call: to review the letter to Secretary Sebelius regarding essential health benefits and the Affordable Care Act (ACA), and to discuss the activities of this Subcommittee for the coming year, taking into consideration and the scheduled sunset of the IACC in September 2014. Dr. Daniels added that it would be important to prioritize tasks to make the best use of the time available.

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Letter to the Secretary on Health Coverage

Dr. Mandell provided some context for the letter to the Secretary that the Subcommittee had been tasked to write by the full Committee at their previous meeting.  A copy of the draft letter had been distributed to the Subcommittee for discussion and was provided to the public online in the meeting materials. The draft letter was crafted to provide advice to the Secretary regarding issues related to policy and services for autism as the ACA is being implemented. The letter was discussed as being the first in a series. This first letter would address the need for essential health benefits to cover behavioral health treatment for children with autism. He noted that the letter also could help inform the decisions of other groups about services and policies for people with autism.

Subcommittee members discussed the text of the draft letter. Dr. Thomas Insel noted that the letter made a clear statement about the scientific evidence and could also be used by advocates. Dr. Larry Wexler said that regarding the 25 hours per week of services recommended for children with ASD, his concern was that these hours per week of occupational therapy (OT)/ Physical Therapy (PT) and other related services could be accomplished within the schools. He cautioned against appearing to support the idea that receiving 25 hours a week of services in school means that the obligation for services has been met. Ms. Idil Abdull said that if the goal is to reduce disparities, it is important to ensure that all children receive available therapies that are cost-effective and science-based. Dr. Cathy Rice suggested adding the need to coordinate with education services – particularly services provided under IDEA. She commented that there is a need for multiple potential funding insurance streams.

Dr. Mandell said that speech, OT, PT, and other therapies that are often needed for children and adults with autism are covered primarily under state plans. The importance of this letter, he said, is that it is targeting a specific set of evidence-based treatments – components of care – that have strong potential to be left out of state plans.

Subcommittee members discussed whether the same services covered by ACA would be mandated to be available through Medicaid. Dr. Mandell asked Mr. John O'Brien whether all insurers in a state – including public insurers – must cover a service under the ACA if the state covers that service under its essential health benefits. If behavioral treatment was included as an essential health benefit in a state, would that mean that behavioral treatment would become an essential health benefit or a covered service under Medicaid as well? Mr. O'Brien said that a final regulation is being developed to address this. The proposed rule states that the alternative benefit plans, which are the plans that will cover the Medicaid expansion population, must offer the 10 essential health benefit categories that are in statute. However, neither in the Marketplace, (formerly the Exchange), nor in the Medicaid regulations are any particular services specified for those 10 categories. Thus, a state could have different plans for individuals participating in the Marketplace and for individuals participating in Medicaid, as long as there are services within those 10 essential health benefit categories. The services can be different, depending on the state. For the expansion population, it does not necessarily change the coverage in the regular Medicaid program for people who are currently eligible for Medicaid.

Dr. Insel commented that given this new information, it appeared to be possible that Medicaid and the Marketplace could end up having two different schedules for coverage; an individual might be covered if he/she is in that expansion population, but not if that individual is in the core Medicaid population. He suggested the Subcommittee should consider providing this information in the letter. Dr. Mandell said that they could add text noting that Medicaid is the single largest insurer of children with autism and that it is important to avoid having a two-tiered system with autism benefits only for those in private insurance or a particular treatment benefit only for those in private insurance.

Dr. Rice said it is important to be clear that behavioral therapy is an essential component of treatment that is at risk of being omitted. Dr. Insel said that there is a need to provide the most rigorous statement possible about why the IACC believes this therapy is ready for prime time based on the evidence. There was a discussion about the level of evidence needed to support the efficacy of applied behavioral analysis (ABA). Dr. Mandell said that although the evidence is not as strong as ultimately they would want, these interventions should be included in state insurance plans.

Dr. Insel said that there was a sense of urgency regarding the letter because states were ready to start making decisions about coverage relevant to the ACA, parity, and more. He noted that the essential benefits had been released. The question was whether the IACC could be helpful by providing information to guide the Secretary and others, including the states, providers, and consumers, as they consider what the states should cover. The idea was to maintain a narrow, timely focus to fill an urgent need for information about the latest evidence on the efficacy of interventions to help inform state level coverage decisions.

Dr. Mandell said that there was a tremendous body of research for adults, adolescents, and school-age children using behavioral treatments to change specific behaviors. He suggested that the Subcommittee should focus on treatments for which there is the most rigorous evidence. Dr. Mandell commented that it seemed that the group was coming to agreement on several issues, one of which was whether the letter should focus on a particular age group or be more inclusive of all ages. This issue has two parts, he said—1) whether the Subcommittee would address issues related to adults in a separate letter and 2) if the letter stays focused on children, whether the Subcommittee specifies that these are preschool-age children. The group discussed whether to limit the letter to treatments for children or to include individuals with ASD across the lifespan. Mr. Robertson argued that the letter should make it clear that although early services and supports are beneficial, individuals will experience challenges throughout the rest of their lives. Others maintained that the current approaches with the strongest evidence base are early interventions for children. Dr. Insel said that the letter currently says that children who are not treated face a lifetime of disability and increased healthcare, educational, and services costs, and in some cases they require costly 24-hour services and supports over the lifespan. He further remarked that his sense was that the group was coming to some consensus to keep the letter focused to increase its impact, and that other issues could potentially be covered through another letter.

Dr. Mandell reviewed the proposed changes to the letter, including adding text acknowledging autism as a lifespan condition with supports needed throughout the lifespan—and that with early behavioral therapy children can make significant improvements. In addition, it was suggested that a sentence be added in the first paragraph noting that Medicaid is the single largest insurer of children with autism and that it is important to avoid having a two-tiered system with autism benefits only for those in private insurance or a particular treatment benefit only for those in private insurance. Third, add a sentence acknowledging that individuals with autism require many different types of care, and that one particular form of care – behavioral interventions for young children –which has the most evidence to support it, is in danger of being left out of the essential health benefits of state plans.

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Vote

It was moved to vote to approve the plan to incorporate these changes into the letter and then distribute the letter in draft form to the full Committee during the March 19 full Committee conference call for discussion and voting. The vote was unanimously in favor except for one abstention (Mr. O'Brien).

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Discussion of Subcommittee Plans for 2013

The Subcommittee agreed generally that for the coming year, there should be a focus on the unmet service needs of adolescents and adults with ASD. Dr. Batra said that she wanted to not only emphasize adolescents and adults in terms of their level of independent functioning, but also to focus on the need to identify individual endophenotypes in terms of function. Mr. Robertson suggested efforts to find out which individuals could benefit from supports and services to facilitate better independent living, quality of life, gainful employment, and the provision of needed assistive technologies.

Participants asked Dr. Daniels to summarize the four topics/projects listed during the last Committee meeting. Dr. Daniels said that the first was the project to draft a letter to the Secretary on ACA/Medicaid expansion and insurance exchanges, which was discussed during the earlier portion of the meeting. The second was a project to address the lack of diagnosis and intervention services for adults with ASD, which was modified to include adolescents. The third was a project on health disparities, including early diagnosis, access to healthcare and services, outreach to minority communities, and cultural barriers. The fourth involved discussing how coordination between service agencies could be improved and the development of recommendations for improving service provision and delivery. She noted that the Subcommittee for Basic and Translational Research (BTR Subcommittee) also recently proposed new projects and recently had decided that the 2013 update of the Strategic Plan be more of an accountability update, focusing on what has been accomplished and what objectives have been achieved and can be removed from the list of objectives.

Dr. Daniels said that multiple Committee projects needed to be coordinated simultaneously, including some that are mandated by the Combating Autism Act, such as the annual update of the Strategic Plan. Given that, the Federal Advisory Committee Act required that a designated federal official (i.e, the Office of Autism Research Coordination) oversee all committee activities, it would be important to prioritize and stagger projects to keep the workload manageable and ensure that projects come to completion.

Mr. Robertson returned to the discussion of projects, saying that rather than just indicating that there are gaps, such as those for adults, there should be a focus specifically on what can be done to fill those gaps. Ms. Abdull suggested that the Subcommittee focus on the four suggested areas of interest Dr. Daniels summarized this information and reminded the Subcommittee of the work that would be required to update the two Strategic Plan chapters that fall within the areas of expertise of the SRP Subcommittee.

The Subcommittee next discussed ASD services toolkits available or under development. They also discussed various resources that have been developed by states, Governors' councils, Maternal and Child Health Programs, and others that have compiled and coordinated some of these resources. It was agreed that more coordination of products and more guidance on navigating services are needed for practitioners and families, including coordination of services across HHS agencies. Mr. Robertson asked Dr. Daniels if the Subcommittee could create products such as toolkits, guidebooks, or a roadmap addressing recommendations for supports and services for autistic adults. Dr. Daniels said that the Subcommittee can decide whether it wants to create such products, determine the focus of the effort, and participate in another call or in-person meeting to discuss the matter further. It was suggested that it would be productive to find out what the states are doing in this area before deciding how to move forward.

Mr. O'Brien briefly updated the Subcommittee on CMS's "The State of the States" effort, which has included a review of what the states are covering under Medicaid. Subcommittee members then agreed that the priority areas the Subcommittee would address in the future would be 1) adolescents and adults with autism and 2) disparities. For adults with autism, the possibility of a services roadmap was discussed, drawing on the extant literature and possibly the results of a workshop, with specifics on who would be involved and the timeline to be discussed later. There was also discussion on whether both areas would be tackled at the same time or separately, but a decision was not made in this regard.

Subcommittee members briefly discussed how time should be used at full Committee meetings, with a focus on achieving a balance between discussion time and presentation time. Dr. Daniels commented that according to FACA, ultimately, the Chair makes the final agenda decisions and that because of time limitations, prioritization of topics is important. She said that if the Subcommittee would like to have an in-person meeting in April, it could be arranged.

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Adjournment

The teleconference was adjourned at 5:05 p.m.

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Certification

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

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