Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee on September 13, 2010
The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on Monday, September 13, 2010 from 1:00 p.m. to 4:00 p.m. Eastern.
Participants: Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS) (attended by phone); Lee Grossman, Co-Chair, Autism Society of America; Susan A. Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Gail R. Houle, Ph.D., U.S. Department of Education (attended by phone); Jennifer G. Johnson, Ed.D., (representing Sharon Lewis), Administration for Children and Families (ACF) (attended by phone); Christine M. McKee, J.D. (attended by phone); Ari Ne'eman, Autistic Self-Advocacy Network (ASAN) (attended by phone); Denise D. Resnik, Southwest Autism Research and Resource Center (SARRC) (attended by phone); Cathy Rice, Ph.D., (representing Ed Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC); Stephen M. Shore, Ed.D., Autism Spectrum Consulting and Adelphi University
Roll Call, Welcome, and Introductions
Dr. Susan Daniels welcomed the Services Subcommittee members to the meeting and conducted roll call. She stated that the aim of the day's meeting was to finalize plans for the Services Workshop to be held at the Rockville Hilton on November 8, 2010. Mr. Lee Grossman introduced Dr. Stephen Shore who would speak to the group about effectively including students with ASD in general education classrooms. Ms. Ellen Blackwell reminded those listening to the teleconference that copies of presentations during any of their meetings could be requested by emailing IACCPublicInquiries@mail.nih.gov. In the future all presentations will also be available online on the IACC web site.
Presentation: Inclusionary Tactics or Extensions of Good Teaching Practice? – Dr. Stephen Shore
Dr. Shore then began his presentation on classroom inclusion entitled, "Inclusionary tactics or extensions of good teaching practice?" The ideal, he said, would be to create a universal design for education that would accommodate all learners, eliminating the need to create a unique curriculum for students with ASD or other learning disabilities. Universal design is already used in building design – ramps are installed for people with physical disabilities but also can be used by all, for example. Dr. Shore then described his own childhood. He first experienced symptoms of autism at 24 months of age, but was not diagnosed until the age of three. At that time, the doctors recommended institutionalization. Instead, his parents advocated on his behalf and he was able to enter general schooling the following year. In the interim his mother provided home-based early intervention that emphasized music, movement, sensory integration, narration, and imitation.
By imitating his actions, his mother was able to increase his own sense of self-awareness and awareness of his environment. This is described in the Miller Method as increasing his "zone of intention," a term for the space within which a child with ASD can most effectively take in new information. Dr. Shore said that more of his early upbringing is described in his book Beyond the Wall. He is currently an assistant professor of special education at Adelphi University.
Dr. Shore then discussed his dissertation project examining five promising approaches for treating child on the autism spectrum: Applied Behavioral Analysis (ABA), Treatment and Education of Autistic and Communication-related handicapped Children (TEACCH), Daily Life Therapy (DLT), the Miller method, and DIR/Floortime. Rather than tackling the complex process of designing randomized controlled trials, he chose to speak with the developers of each of the methods to determine how they dealt with challenging behaviors and whether the intervention had a greater focus on the therapist or the child. He noted that Daily Life Therapy was the only therapy of the five initially created for use with typically developing children. Dr. Shore then summarized the unique aspects of each therapy, noting that the Miller method was unique in its use of varying amounts of disorder to help the child understand his environment. Ultimately, he said that his work was not intended to identify the best overall approach but to help identify the therapy that would best suit the needs of each child. From his work, he developed several general recommendations including the need to remove Rett syndrome and Childhood Disintegrative Disorder from the autism classification. He also recommended defining subtypes within autism (Dr. Miller suggested that there were two and Dr. Serena Wieder suggested four subtypes). He noted that the spectrum was so broadly defined that it had become virtually useless as a tool for selecting interventions and noted that work to help people with ASD was progressing at an "evolutionary rather than revolutionary" pace.
He then discussed the nine educational domains of accommodation – size, time, level of support, input, difficulty, output, participation, alternate, and substitute curriculum – and gave examples of how to use inclusionary tactics related to the domain. For example when addressing size, the number of items on a quiz could be divided into two smaller quizzes over the week, a strategy that could help all students better retain the information over time. Addressing the domain of time, all students can benefit from lessons about setting intermediary deadlines for long-term projects, not just those with ASD. For addressing level of support, Dr. Shore recommended assigning peer buddies and peer-tutors to increase the amount of personal assistance for a specific learner. This may also help improve the social skills of the student with ASD and heighten understanding about the disorder for their typically developing peers. Dr. Shore also described how instructors could adapt the way instruction is delivered (e.g., using more visual aids and planning more concrete examples) to promote classroom inclusion. The level of difficulty can be adapted by changing rules to accommodate the learners needs (e.g., allowing calculators on a math test) and the output could be adapted to allow the child to respond in a different manner (verbal instead of written response, for example).
Dr. Shore than presented a scenario where "Elijah," an elementary school student with high-functioning autism, is unable to complete a geography quiz labeling different countries. Elijah has difficulty with creative writing and mathematics; however he has shown an aptitude for drafting and computer-aided design. Dr. Shore discussed modifying the quiz to play to Elijah's strengths – for example, allowing him to use a computer program where he could generate a map of the countries. In some cases, the goal of the lesson will have to be adapted, he explained (e.g., students with ASD will locate states while other children memorize the capitals as well). Another case study described "Valerie," a student with autism who was included in the senior chorus. Despite intensive support from an aide and a well-planned behavioral program, Valerie moans continuously while the chorus is practicing; however she is able to stay silent while pacing around the room. Dr. Shore discussed the possibility of giving Valerie a flag to march with during the concert of international music so that she is meaningfully included.
Dr. Shore discussed the possibility that a substitute curriculum may sometimes be needed, providing different materials to meet the student's individual needs while remaining aligned with the topic. He cautioned against geographic inclusion where a child is within the same class but completely uninvolved with the class lesson. He then discussed the concept of "fairness," noting that other students may feel that the child is getting an unfair advantage, but he likened it to giving glasses to people with vision problems – one receives special help to meet a need.
He reiterated the importance of universal design to create curriculum that accesses the greatest number of students. To accomplish this, teachers must provide inclusive classrooms; simple, clear, and innovative procedures; and provide the most readable and comprehensible material possible. He finished by posing the question: "Are we talking about special ways and techniques just for people with autism or merely extensions of good teaching practices?"
Discussion of Dr. Shore's Presentation
Ms. Blackwell asked whether he felt all children with ASD were capable of being successful in an inclusive classroom if given the appropriate supports. He said that inclusion must always be the goal; unfortunately with limited resources it is not possible to create this environment. Mr. Ne'eman asked if Dr. Shore saw danger in ranking some intervention methods above others when creating public policy. Dr. Shore said that it must be emphasized that different methods will work for different people so no one methodology should be prescribed in legislation. Ms. Blackwell noted that Dr. Tony Charman had spoken at the October 2009 meeting about the evidence supporting Applied Behavioral Analysis-based therapies. Ms. Resnik asked if there was any empirical data supporting the Miller method and Dr. Shore said that unfortunately, there was very little data supporting any of the interventions. He recommended visiting the Miller method1 web site or the book of the same name for more information on the approach. Ms. Blackwell mentioned that the Centers for Medicare & Medicaid Services (CMS), in collaboration with the National Institute of Mental Health (NIMH), conducted a study on the evidence base for different ASD interventions.2
Mr. Grossman asked Dr. Shore about the need for empirical data to validate any particular intervention and Dr. Shore responded that it was difficult to develop research studies on ASD therapies using traditional means given the nature of human development. He therefore preferred the term "promising approaches" to "evidence-based research approaches."
Discussion of Plans for the November 8, 2010 Services Workshop
Ms. Blackwell said that she and co-chair Lee Grossman had developed a draft agenda for the Services Workshop with the theme of "Developing a seamless system of services and supports across the lifespan." They envisioned that the speakers would discuss effective systems that had been put in place. The subcommittee discussed the possibility of having other meetings to cover topics that were not on the agenda for the November workshop, such as employment. Ms. Resnik recommended plotting the phases of development for their efforts in order to manage expectations and provide guidance. Dr. Daniels reminded the subcommittee that the IACC will either be reauthorized or will sunset in 2011 so they should plan accordingly. The subcommittee discussed generating a basic set of recommendations quickly and bringing them before the full IACC for its approval before the end of 2010. A more in-depth set of recommendations could then be submitted later. The subcommittee then reviewed the list of workshop speakers and Mr. Ne'eman expressed his concern that there were no self-advocates on the list. Ms. Blackwell recommended that the subcommittee review the speakers one by one and Dr. Cathy Rice requested that the subcommittee also identify the RFI priority area to which it pertained (e.g., Adults, Community, Family Support, Early Intervention/School Services, Providers, and Infrastructure).
Ms. Blackwell then reviewed the speakers on the draft agenda. The first proposed speaker, Dr. Nancy Thaler, is the Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS). She helped to develop a home and community based services (HCBS) waiver with CMS and she would be able to explain how state directors were dealing with current financial strain, Ms. Blackwell said. Mr. Grossman explained that Dr. Bill East is the Executive Director of the National Association of State Directors of Special Education (NASDSE) and said that he would be a good speaker to describe the future direction of education for people with ASD. Ms. Blackwell noted that Dr. Charlie Lakin is a University of Minnesota professor who has been instrumental in developing training and certification for direct support workers. He has also worked with NASDDDS on the National Core Indicators project, which examines quality of life factors as they relate to services for people with ASD. The subcommittee discussed which priority areas the speakers would address and decided that Dr. Thaler would relate to Infrastructure, Adults, and Community; Dr. East would address School Services and Infrastructure; and Dr. Lakin would address Infrastructure, as well. Ms. Resnik confirmed that the speakers would be presenting the most innovative and promising models.
Ms. Blackwell explained that Mr. Michael Head is the Director of the Michigan Department of Long-Term Care Services and Supports. In Michigan, every individual is offered self-direction as a service-delivery option, she noted. (Self-directed services allow individuals with disabilities to control their selection of services and supports. They are able to hire and fire their own staff and may control a certain sum of money to purchase necessary supports.) Mr. Head worked with Dr. James Conroy, the other suggested speaker, on an analysis of cost-savings associated with self-direction. Ms. Blackwell said that a possible recommendation could be that all states be required to offer the option of self-direction. Mr. Ne'eman said that Dr. Conroy was also a good choice because he had been involved in studying the benefits of deinstitutionalizing people with developmental disabilities. Ms. Blackwell then noted that self-direction was only offered in a patchwork of states across the country. She said that the concept of self-directed services would touch on all RFI priority areas.
Ms. Blackwell then described Ms. Linda Rolfe, the recommended speaker for the panel on standardized assessment. Ms. Rolfe is the Director of the Washington Division of Developmental Disabilities and Ms. Blackwell said that she could speak to the state's unique practice of performing standardized assessment. Dr. Rice noted that this would touch on Infrastructure to some degree but that assessment may be a cross-cutting issue. Ms. Blackwell said that it might also relate to Providers.
The recommended lunch speaker was Mr. Michael Strautmanis, the Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement. The subcommittee discussed Mr. Thomas E. Perez, Assistant Attorney General for the Civil Rights Division of the Department of Justice, as a possible alternate. Mr. Perez could speak about the enforcement of the Olmstead Act and the Americans with Disabilities Act. Mr. Ne'eman endorsed Mr. Perez as a speaker and Ms. Resnik asked if he could possibly speak at a future IACC meeting. Mr. Ne'eman noted that both Mr. Strautmanis and Mr. Perez were notable figures and should be featured centrally on the agenda. The subcommittee discussed the possibility of having Mr. Strautmanis at the beginning of the meeting and Mr. Perez after the lunch break. Dr. Susan Daniels said that Mr. Perez would be added to the list of possible invitees to speak at future IACC meetings.
For the speakers on community safety, the subcommittee noted that Ms. Sharon Lewis, Commissioner of the Administration on Developmental Disabilities, would be uniquely qualified to talk about the use of restraint. Mr. John Martin, Director of the Ohio Department of Developmental Disabilities, was also mentioned as a potential speaker. Ms. Blackwell said that the city of Taunton, Massachusetts was involved in a program that was effectively diverting people with developmental disabilities from the criminal justice system. Mr. Grossman said that this panel could also address larger safety issues beyond the use of seclusion and restraint. Dr. Rice said that it would relate to the priorities of Community and Family Support.
Discussing the panel on direct service workforce training, Ms. Blackwell mentioned an Indiana program that had used grant money to provide professional development training for direct service workers. This greatly increased the retention rate, which in turn is a significant cost-saving measure. Ms. Resnik said that this panel could also address training, career development, and certification for the direct service workforce. Ms. Blackwell said that Dr. Lakin could talk about the training modules he had developed. She envisioned the panel giving a recommendation related to requiring some government programs to pay for training of direct service workers. Currently, Medicaid does not pay for training.
The subcommittee then discussed the panel on housing options. Ms. Blackwell explained that Medicaid does not pay for room and board and housing vouchers are scarce, although the Department of Housing and Urban Development had recently released several. She said that people with ASD can benefit significantly from living in their own home. Maine is one of two states that help to find rental housing for people through a bride program. She said Mr. Sheldon Wheeler, Director of Housing Resource Development in Maine would be a good speaker to pair with a representative from Neighbors, Inc. in New Jersey. (Ms. Patti Scott the co-founder of the organization would be traveling at the time of the workshop.) This panel would also relate to the theme of self-direction, Ms. Blackwell said. Mr. Ne'eman mentioned a National Youth Leadership Mission (NYLM) summit being funded by the Administration on Developmental Disabilities that would address the definition of community living. Ms. Blackwell said that Mr. Joe Wykowski, founder of Community Vision, might be a good speaker in addition to Mr. Wheeler. She recommended hearing presentations on financing housing options for people with ASD at a future IACC meeting.
Ms. Resnik said that the committee should take advantage of the work other organizations have done while crafting their own recommendations. She said that speakers should be selected who help maximize the opportunities to engage other private and public sector interests. Mr. Ne'eman stated that the speakers should talk about systemic issues rather than focusing on their narrow experiences. The subcommittee discussed the link between safety and housing, noting that proper environmental modifications and supports must be in place. Ms. Blackwell said that she hoped Mr. Wykowski could address the underutilized option of the live-in caregiver, an option covered by Medicaid. Dr. Rice said that the issue of housing should be expanded to include supported residences as well. Dr. Johnson said that many university centers were doing work to find housing for people with developmental disabilities and provide appropriate modifications. She mentioned housing initiatives at University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) in New Hampshire and Mississippi. Ms. Blackwell remarked that housing alone could take up a whole conference and suggested revisiting the topic at a future meeting.
The subcommittee then reviewed the peer supports panel and Mr. Ne'eman said that this would be the opportunity to include self-advocates. He recommended Mr. Jim Sinclair, co-founder of the Autism Network International. He could speak about autistic-run peer-support networks and Autreat, the largest gathering of autistic adults organized by autistic adults. Mr. Grossman suggested self-advocates Mr. Jerry Newport and Ms. Dena Gassner. Ms. Blackwell recommended Dr. Sam Odum, saying he had instituted a program for peer-support in a Wisconsin school district, and also recommending Dr. Brenda Myles who has had similar experience. She noted that peer-support is already a rehabilitation option under Medicaid. Mr. Ne'eman also recommended Dr. Erik Carter who has examined peer-support strategies. Ms. Blackwell said that a potential recommendation to the Secretary might be that peer-support should be required in all school systems. Ms. Christine McKee cited recent research that reinforced the importance of peer-support, particularly in self-contained classrooms. Ms. Blackwell said that she thought this research had not yet been published but recommended hearing about it at a future IACC meeting. Ms. McKee asked about the functional level of the children in Dr. Odum's peer-support program, noting that parents of low-functioning children often have difficulty finding appropriate peer-interaction time. Ms. Blackwell said she was unsure. The subcommittee discussed all the possible speakers for the peer-support panel and decided on Ms. Julie LaBerge to speak about promising practices in her Wisconsin school district, Mr. Jim Sinclair, and a representative from the Towson University Center for Adults with ASD.
The subcommittee members then discussed the speaker for the systems integration panel and Ms. Blackwell endorsed Dr. John Martin from the Ohio Department of Developmental Disabilities. She said he had done an incredible amount of work to create a positive culture in Ohio; the state has banned the use of restraints.
Discussion of Services Policy Recommendations and Future Meetings
The group then reviewed the "parking lot issues" – those saved for future meetings – which included person-centered policy and planning, employment and vocational opportunities, tiered-services ranking, managed care delivery systems, criminal justice diversion, direct service certification, recreational and service programs, supportive residences and other issues related to housing, and programs run by the Department of Defense and the Department of Labor.
Mr. Ne'eman recommended hearing presentations on services provision programs being funded in Florida, Connecticut, and Pennsylvania. Ms. Blackwell said that Ms. Kathy Reddington had presented at the November 2008 meeting about the Connecticut pilot program for adults with ASD who are ineligible for Medicaid. Mr. Grossman said that he and Ms. Blackwell had talked about including Ms. Nina Wall-Cote from the Pennsylvania Bureau of Autism Services to address the managed care delivery system.
Dr. Johnson said that she hoped issues related to early childhood would not get lost in the discussion. Dr. Rice said that Dr. Joan Lombardi was working to identify the most effective early services and could be a good resource. Dr. Johnson mentioned the need to address diversity issues and cultural competence. Ms. Blackwell said that these issues probably warranted an individual recommendation. Dr. Rice noted that themes like cultural competence may be cross-cutting and could be addressed in a separate section as they are in the Strategic Plan for ASD Research.
Mr. Ne'eman asked about the timeline for developing the service policy recommendations. Ms. Blackwell said that the initial recommendations could be delivered to the Secretary in January 2011 with the Strategic Plan for ASD Research and that more in-depth policy recommendations could then be developed throughout 2011. Mr. Ne'eman recommended using a process similar to that used in the 2010 Strategic Plan update where panels of outside experts were brought in to make suggestions. Ms. Resnik said that this would reduce the pressure to accomplish everything during their one-day workshop. Dr. Rice recommended having the subcommittee member begin to generate ideas about opportunities, challenges, and policy recommendations related to the panel areas. Ms. Resnik seconded this proposal and recommended developing a matrix that aligned the panels with the RFI priority areas.
Ms. McKee said that an older draft of the ASD Services Roadmap had an appendix with an extensive list of obstacles and recommended reviewing it to generate ideas. Dr. Daniels agreed to provide a copy of the old draft appendix for research purposes. Ms. Blackwell said that the Services Workshop would generate four or five recommendations and they would then move forward with creating services recommendations that paralleled the Strategic Plan. The subcommittee discussed scheduling a follow-up meeting to the workshop between November 9 – 25, 2010. Dr. Daniels reminded the subcommittee that they could meet by phone and that the full committee would be meeting on October 22. Dr. Rice raised questions about whether presenting their initial recommendations alongside the research strategic plan would give the impression that it was the final product. Dr. Resnik recommended planning next steps in order to keep on track and manage expectations. Ms. Blackwell recommended that the subcommittee members revisit the Request for Information on services issued in 20083 and view the video of the services town hall held in July 2009 at the Autism Society conference.4
Dr. Daniels discussed planning another services workshop in March or April 2011 and members noted that April was less ideal because it was Autism Awareness Month and there were many other activities. Mr. Grossman then announced that he had just received word that Mr. Strautmanis would not be able to attend the November services workshop. They discussed inviting Mr. Perez, Mr. Jeff Crowley, Senior Advisor on Disability Policy for the White House, or Mr. Sam Bagenstos, Principal Deputy Assistant Attorney General, Department of Justice - Civil Rights Division. Mr. Ne'eman said that he or Mr. Chester Finn, Special Assistant with the New York State Office of Mental Retardation and Developmental Disabilities, could present at the next Services Subcommittee meeting about the National Youth Leadership Mission (NYLM) summit on community living. Ms. Blackwell thanked the participants and the meeting was then adjourned.
These minutes of the IACC Services Subcommittee were approved by the Subcommittee on November 29, 2010.
We hereby certify that the foregoing meeting minutes are accurate and complete.
Ellen W. Blackwell, M.S.W.
Services Subcommittee Co-Chair
Services Subcommittee Co-Chair