Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Conference Call on September 15, 2009
The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on Tuesday, September 15, 2009, at Wilson Hall in Building 1 at the National Institutes of Health in Bethesda, Maryland, from 1:00 p.m. to 3:15 p.m.
Participants: Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society; Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Diana Denboba, (representing Bonnie Strickland, Ph.D.), Health Resources and Services Administration (HRSA) (via teleconference); Gail R. Houle, Ph.D., U.S. Department of Education; Denise Juliano-Bult, M.S.W., National Institute of Mental Health; Christine M. McKee, J.D.; Cathy Rice, Ph.D., (representing Ed Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC) (via teleconference); Stephen Shore, Ed.D., Adelphi University (via teleconference); Deidre Washington, (representing Bonnie Strickland, Ph.D.), HRSA (via teleconference).
Welcome and Introductions
Ms. Blackwell welcomed the Subcommittee members and guest speakers before leading a round of introductions. The members then approved the minutes of the June 16, 2009 meeting and Dr. Gail Houle and Dr. Sam Odom began their presentation on the service programs being operated by the Department of Education.
Presentation on Department of Education Programs - Dr. Gail Houle and Dr. Sam Odom
Gail Houle, Ph.D.
Associate Division Director for Early Childhood and Parent Programs
Department of Education
Dr. Houle explained that the Department of Education's Office of Special Education Programs (OSEP) provides leadership and financial support to assist states and local districts in providing comprehensive services for children under IDEA, the Individuals with Disabilities Education Improvement Act. Part D of IDEA supports national activities to improve the education of children with disabilities, from birth through age 21, and includes personnel development, technical assistance and dissemination centers, technology and media projects, and parent training and information projects. OSEP currently awards five training grants at the doctoral level for students preparing to work with children with ASD, 29 Master's degree programs, and two certificate degree programs.
Dr. Houle introduced Dr. Odom and described the National Professional Development Center on Autism Spectrum Disorders, which helps states to implement evidence-based practices for early identification, intervention, education, professional development, and technical assistance. She described the technology and media-based projects called Stepping Stone awards for youth transitioning from high school to post-secondary education or work settings.
OSEP also supports at least one Parent Training and Information Center in each state, as well as regional technical assistance training centers for parent information, which specialize in providing services to culturally and linguistically diverse families. These centers provide training and information to parents of children with disabilities. More information is available at: http://www.taalliance.org.
Dr. Samuel L. Odom
Principal Investigator – National Professional Development Center on Autism Spectrum Disorders
Department of Education
Dr. Sam Odom spoke about his work as the Principal Investigator for the National Professional Development Center on Autism Spectrum Disorders, which promotes the use of evidence-based practices in educational programs for children and adolescents with ASD. The center works across several universities including the University of North Carolina, the University of Wisconsin, and the University of California – Davis.
Local Education Agencies (e.g., schools) report serving an increasing number of students with ASD – in 1991, the Department of Education reported 5,400 children between the ages of 6 and 22. In 2004, that number had risen to 166,000, with an estimated 25,000 more between the ages of 3 and 5. The Department of Education added a mandatory category for reporting "autism" in 1992. These students need appropriate programs to meet their special educational needs and professionals need to be prepared to provide these programs. There is a growing agreement about which practices are most efficacious, said Dr. Odom, who discussed the National Standards Project's recent review of evidence-based practices, available at: http://www.nationalautismcenter.org/about/national.php
He cited several challenges for implementing evidence-based programs in the classroom including the lack of training to prepare existing teachers to work with students on the spectrum, the service system's resistance to innovation, and the need for support and sustainability. Dr. Odom talked about addressing implementation at multiple system levels and presented a flow chart explaining the collaboration between states and the Center.
Each year the center selects three states to work with on program implementation and professional development. States first submit an application and then the selected states will establish a project plan, commit resources, and identify the individuals that will be involved in program planning and training. The teachers working with the students participate in an intensive summer training workshop and the Center provides ongoing assistance within the classroom sites during the year to help select and implement evidence-based practices for specific children in the program. During the second year more responsibility is given to state personnel who become responsible for leading the summer professional development workshop. In the third year, the Center evaluates whether the schools have continued to use their professional development work. Dr. Odom spoke about the stages of implementation identified by the National Implementation Research Network, which include exploration, installation, initial implementation, full implementation, innovation, and sustainability.
He then described the content of the Center's training program. Teachers who will teach at the selected demonstration sites take an online course that familiarizes them with the basics of ASD. The course is taught in eight sessions, accessed using BlackBoard, each of which include a pre- and post-test. The online introductory course covers the program's guiding principles and recommended practices, explains the foundation for communication and social interventions, and teaches how to promote positive behavior while reducing interfering behaviors. Dr. Odom discussed the quality indicators used to measure the program, describing the program quality as the house in which practices are employed. Using this analogy, the quality is the house itself while evidence-based practices are the furniture or appliances used for specific purposes within the house.
Program quality is assessed using the Autism Program Environment Rating Scale (APERS), which is designed for use by an outside evaluator or for self-assessment by teachers, specialists, and administrators. Dr. Odom described the APERS criteria, which varies slightly for preschool/elementary school vs. middle/high school.
For a practice to be "evidence-based," at least two-high quality experimental or quasi-experimental studies must have been performed, or at least five single-subject design studies conducted by different researchers. Evidence-based strategies identified by the Center include naturalistic interventions, peer-mediated, Picture Exchange Communication System (PECS), pivotal response training, self-management, social narrative, social skills training, structured work systems, video modeling, and visual supports. Evidence-based practice briefs have been prepared that outline the evidence base supporting the effectiveness of the practice, the practice description, steps for implementation, and a fidelity implementation checklist. Dr. Odom displayed a chart indicating which evidence-based practice was effective according to age and targeted skill.
The National Professional Development Center has partnered with the Ohio Center for Autism and Low Incidence Disorders (OCALI) to create the training modules used to train teachers in evidence-based practices. These modules can be viewed at http://www.Autisminternetmodules.org/ and include pre- and post-tests, step-by-step instructions, video examples, an implementation checklist, and other resources. A goal attainment scale is used to measure the fulfillment of the student's individualized education program. Dr. Odom described how individual goals are determined and scored for attainment.
The Center is currently working with six states. Programs in Indiana, New Mexico, and Wisconsin have recently been initiated and programs in Kentucky, Minnesota, and Michigan have completed their first year. Virginia, Texas, and California have been selected for the 2010 cohort. In total, twelve states will be involved over the four-year program.
Dr. Odom summarized the key activities coordinated with the states which include assembling a planning team of key stakeholder and policymakers, establishing a model demonstration site, creating a technical assistance team, and preparing a strategic plan that describes the goals and timeline for the state's involvement. Educators then participate in a summer institute while getting ongoing technical assistance throughout the year. During the second year, states take the lead in professional development activities. States can submit applications online at: http://www.fpg.unc.edu/~autismPDC/training/state-partners.cfm
Dr. Odom concluded his talk by reiterating the purpose of the Professional Development Center – to establish a sustainable system of professional development that states employ to develop high-quality programs using evidence-based practices. He said that the Center will remain in contact with the states to gauge the sustainability of its work.
Questions from the Subcommittee
Ms. Christine McKee asked about the program's target population and whether it was intended for classrooms exclusively with students on the spectrum. Dr. Odom responded that the programs were designed for students across the spectrum, focused on ages 3 to 22. He estimated that about half of the programs were conducted in self-contained classrooms.
Ms. Blackwell asked whether a mechanism had been established for participating states to share their experiences with other states. Dr. Odom said that they had created a forum for states already participating in the program to communicate with newly selected states, but that no mechanism had been established to disseminate information beyond this. Ms. Blackwell and Dr. Houle clarified that the ASD statistics cited by Dr. Odom represented the count of children receiving special education services under the category autism and did not represent a prevalence count.
Lt. Deidre Washington asked Dr. Odom to elaborate on the concept of "community of practices" and Dr. Odom defined the term as the group of individuals associated with the project and noted that the Center was trying to foster communication to create a larger, national community of practice networks. Mr. Lee Grossman said that the National Association of State Directors of Special Education (NASDSE) was convening a panel at a Salt Lake City Conference in October 2009 to discuss communities of practice.
Ms. McKee asked what computer programs were recommended by the Center and noted that computers are often used as a reward for children with ASD rather than for academics. Dr. Odom said that they did not recommend specific programs and that technology use was intended in their program primarily for computer-assisted instruction in the classroom. Ms. McKee followed up with a question about the availability of voice output devices and other forms of augmentative communication. Dr. Odom responded that access varied by location and that funding was often an issue. Ms. McKee asked whether the Department of Education planned to create standards for educating children with ASD based on the results of the project. Dr. Houle explained that the Department of Education could not endorse a specific methodology, however research about best practices at the state level could be disseminated to a wider audience.
Dr. Houle and Dr. Odom encouraged people to look at the online modules currently available and said that they were in the process of developing modules for all 24 evidence-based practices identified by the Center. Ms. Denise Juliano-Bult asked about the time table for the Center's project and was told that the Center was in the third year of their five-year funding. Ms. Diana Denboba commented that some of the parent and training information centers mentioned at the beginning of the presentation are funded by HRSA and that they were trying to increase collaboration with the Department of Education. Dr. Houle noted that she had distributed a handout with the personnel development grants funded by OSEP listing the institution and the degree. She explained that under the grant, a minimum of 65 percent of the funds must go to supporting the student. This translates into money available to educate people who want to work with children on the spectrum. Mr. Grossman stated that the Autism Society had provided the initial funding for the autism intervention training modules and that they hoped to have 80 modules available by 2010.
Approval of July 24, 2009 IACC Town Hall Meeting Minutes
The subcommittee reviewed the minutes from the July 24, 2009 town hall meeting and asked that an official count of the number of attendees be added. The minutes were then approved. Ms. Blackwell said that the town hall meeting, held at the Autism Society annual conference in St. Charles, Illinois, had been a great venue for live interaction with the public. During the town hall, six Subcommittee members gave presentations about their organization's ASD service efforts before hearing approximately thirty comments from the public. Mr. Grossman said the public feedback about the town hall had been very positive. The videocast of the event is available at http://videocast.nih.gov/Summary.asp?File=15233. Ms. Blackwell said that the analysis of the town hall, in addition to the public comments gathered through the Request for Information on ASD services put out in Fall 2008, would be a valuable resource during the Strategic Plan updating process. The IACC will hold a scientific workshop to help inform the update on September 30 - October 1, 2009, at the Bethesda North Marriott Hotel in Bethesda, Maryland.
Dr. Shore agreed to present at the next Services Subcommittee meeting. Ms. McKee asked Dr. Odom if the research articles that supported the best practices would be cited, as they could serve as an important resource to parents, and Dr. Odom said that the research would be noted in the modules.
Ms. Blackwell told that the Subcommittee members that they had been given a flier about the Advancing Futures for Adults with Autism (AFAA) town hall meeting scheduled for November 13, 2009, as well as information about the Foundation for Autism Support and Training, and an organization called InventSuccess. She also noted that the Agency for Healthcare Research and Quality (AHRQ) had published draft research questions for conducting a comparative effectiveness review of therapies for children with ASD. Dr. Tony Charman will discuss Applied Behavioral Analysis – based therapies at the full IACC meeting on October 23, 2009.
The subcommittee members then conducted a round-robin update on their ASD service activities. Ms. Juliano-Bult said that the National Institute of Mental Health was in the process of funding four services research grants with money from the American Recovery and Reinvestment Act (ARRA) and two research projects under the CHALLENGE program. One area of research relates to understanding minority access to services, while another project will investigate technology for service training and dissemination. NIMH conducted a services research think tank in July 2009, attended by Sam Odom, and the American Public Health Association will conduct a similar event at their meeting in November 2009, hosted by Dr. David Mandell.
Mr. Grossman reported that the Autism Society had established professional competencies that must be fulfilled by all university educating their students about ASD. Ms. Blackwell spoke about the Year of Community Living initiative being undertaken by the Office of Disabilities and mentioned that a new request for proposals had been released for the state of the states, assessing autism activities across the U.S.
Dr. Houle said that the Department of Education had posted guidelines for state use of ARRA funds on IDEA programs. ARRA funds can be used for any purpose in accordance with past IDEA appropriations. Dr. Houle also noted new staff appointments within the department.
Dr. Shore reported that Adelphi University was developing an autism graduate certificate. Dr. Cathy Rice reported that the CDC hoped to release their newest ASD prevalence report by the end of the year and noted that a study based on the National Survey of Children's Health would be published in Pediatrics in October. The CDC is continuing to convene Act Early summits that bring together state and regional leaders to the address service needs of children with ASD. The next summit will be held in Atlanta, Georgia, in October. More information is available at the Association for University Centers for Disabilities web site: http://www.aucd.org
Lt. Washington reported that HRSA had sponsored the research based on the National Survey of Children's Health and would unveil some of the findings soon. She also reported that three new state grants and seven new research intervention grants based on the Combating Autism Act Initiative had been awarded.
Dr. Rice asked if the Subcommittee could set up a repository for state ASD service plans and suggested hearing more about plans for state collaboration. Ms. Blackwell noted that Pennsylvania has a good autism services Web site. Dr. Daniels suggested submitting a formal proposal to the full committee if they wished to pursue creating a resource to collect state service plans. Ms. McKee noted that a woman who had brought her son to a previous meeting had not been able to speak and suggested the possibility of organizing a reception for families to bring their loved ones with ASD, giving the committee a greater awareness of the breadth of the autism spectrum. Dr. Daniels suggested that finding a non-profit partner might be necessary due to budget limitations. Ms. Blackwell thanked the subcommittee members for their participation and the meeting was then adjourned.
Materials from the presentation are available by emailing IACCPublicInquiries@mail.nih.gov.
These minutes of the IACC Services Subcommittee were approved by the Subcommittee on June 9, 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