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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee on November 29, 2010

The Interagency Autism Coordinating (IACC) Services Subcommittee held a conference call on Monday, November 29, 2010 from 2:00 p.m. to 4:00 p.m. Eastern.

Participants:  Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society of America,; Susan A. Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC),; Henry Claypool, Office on Disability; Gail R. Houle, Ph.D., U.S. Department of Education; Jennifer G. Johnson, Ed.D., (representing Sharon Lewis), Administration for Children and Families; Christine M. McKee, J.D.; Denise D. Resnik, Southwest Autism Research and Resource Center (SARRC); Cathy Rice, Ph.D., (representing Coleen Boyle, Ph.D.), Centers for Disease Control and Prevention (CDC); Stephen M. Shore, Ed.D., Autism Spectrum Consulting; Bonnie Strickland, Ph.D., (for Peter van Dyck, M.D., M.P.H), Health Resources and Services Administration

Welcome, Introductions, and Approval of the Minutes

Dr. Daniels welcomed the subcommittee and thanked them for their hard work organizing the Services Workshop that took place on November 8. The subcommittee then reviewed and approved the minutes from August 10, 2010 and September 13, 2010.

Discussion of Recommendations from the November 8, 2010 IACC Services Workshop: Building a Seamless system of Quality Supports and Services Across the Lifespan

Subcommittee Co-Chairs Ellen Blackwell and Lee Grossman asked the group for their reactions to the November 8th Services Workshop. Ms. Denise Resnik asked about the process for developing the policy recommendations to be sent to Secretary Kathleen Sebelius and Ms. Blackwell answered that the recommendations would be developed from presenter input at the meeting. She noted that an additional set of recommendations might come from another meeting. Ms. Resnik asked if prior activities involving community outreach (Requests for Information [RFIs], town halls) would be used to generate the recommendations. Ms. Blackwell said that the recommendations would be specific to the workshop but that they had drawn from these other sources while organizing the event. Mr. Grossman noted that the subcommittee could deliver multiple sets of recommendations, but that they had been urged to bring draft recommendations to the December 14, 2010 meeting of the full committee. Ms. Resnik stated the importance of explaining the process so that the broader community could understand how to provide input. Ms. Blackwell noted that the first set of recommendations should be developed quickly because of the uncertainty about the IACC's future due to the expiration of the Combating Autism Act and subsequent sunset or reauthorization of the committee by September 30, 2011. She noted the possibility of convening another services workshop in April 2011. The subcommittee agreed to seek approval for an additional workshop from the full committee at their December 2010 meeting.

Ms. Blackwell reviewed the speakers and topics covered at the November 8th Services Workshop1 and listed the topics that could be addressed at a future meeting.2 She noted that while they had been unable to have a representative from the Department of Justice (DoJ) speak at the November workshop, they hoped to have someone from DoJ speak about their activities in the future. Dr. Bonnie Strickland suggested that, in light of recent healthcare reform, the subcommittee consider including a recommendation to the Secretary related to addressing healthcare disparities for people with ASD.

The Services Subcommittee members then reviewed the recommendations from the workshop speakers. Ms. Blackwell encouraged anyone who had not attended to review the speakers' materials and the videocast of the event.3 She began by summarizing Dr. Charlie Lakin's presentation which focused on how state fiscal issues were causing the service system to contract. One consequence of state service cuts is that adults are staying in their family's home longer. Dr. Lakin recommended greater focus on research into evidence-based quality family support services in recognition of this fact. Mr. Henry Claypool asked if there would be specific language to review for the recommendations and Ms. Blackwell said they hoped to develop specifics during the call.

Ms. Blackwell summarized the workshop presentations on self-direction. Mr. Michael Head spoke about Michigan's requirement that self-directed options are included in all of the state's service programs and Dr. James Conroy spoke about the cost-effectiveness of self-direction and participant- direction. Ms. Blackwell said that these presentations supported the recommendation that every state offer a self-directed option within Medicaid home and community-based services (HCBS) waivers serving people with intellectual and developmental disabilities. This would include control over an individual budget and the authority to hire support staff, which could include relatives. Mr. Grossman clarified that they had tried to select recommendations that Secretary Sebelius would have the power to implement.  Ms. Jennifer Johnson said that the presenters had also emphasized that self-directed services be based on person-centered planning (which empowers people with disabilities to plan and work toward their own self-identified goals). She noted that any related recommendation would also have to address how to support the implementation of person-centered planning.

Mr. Donald Clintsman spoke about adopting a standardized assessment tool (the CARE tool) for home and community-based waiver programs in Washington state. Ms. Blackwell said that she and Mr. Grossman had discussed the recommendation that states adopt standardized assessment procedures in their HCBS waivers. Collecting common data would promote consistency, help to determine services effectives, and inform state policymakers of budgeting needs. Dr. Strickland said that she wanted to emphasize that standardized assessment would span healthcare needs as well. Dr. Johnson said she would recommend using standardized assessments to integrate multiple service systems, making navigation easier. Mr. Claypool added that it might be necessary to clarify that this was not a universal functional assessment tool but one specific to people with developmental disabilities. Dr. Strickland recommended using the term "standardized approaches to person-centered planning" or something similar.

The group then discussed Ms. Kevin Ann Huckshorn's presentation on the prevention of seclusion and restraint. Ms. Blackwell suggested the recommendation to significantly reduce the use of seclusion and restraint in all settings (institutional, community, school) with the ultimate goal of eliminating its use entirely. She and Mr. Grossman had discussed the possibility of working with the Administration on Developmental Disabilities to develop and disseminate training strategies to reduce the use of seclusion and restraint. Mr. Grossman recommended that Secretary Sebelius coordinate with Secretary of Education Arne Duncan to implement these measures in school-based programs. Mr. Grossman recommended setting a goal for the complete elimination of restraint and seclusion within three years. Dr. Johnson noted the importance of teaching the use of positive behavioral supports. Dr. Gail Houle said that the Department of Education had been very successful in using positive behavioral supports for behavior management and reinforcement in the classroom. The group noted that the recommendation on the prevention of restraint and seclusion seemed to be one of the most attainable goals in the shortest period of time.

Ms. Blackwell discussed the presentation by Ms. Carrie Blakeway and Ms. Erika Robbins on direct service workforce training. She noted that one resulting recommendation might be that Medicaid subsidize direct service worker training as an optional home and community-based service. The presentation focused on how Medicaid could pay for worker training and explored potential tiered reimbursement strategies for greater specialization. Ms. Blackwell noted that investing in workforce training would result in cost savings in the long-term because of greater retention levels. Dr. Johnson said that the early care and education field had addressed similar recruitment and retention issues. Mr. Grossman asked whether recruitment issues were explicitly addressed in the presentation and Dr. Johnson suggested that this was touched upon while discussing apprenticeship programs with the Department of Labor. She cited the College of Direct Support in Minnesota as a training resource for direct support workers that could be used as part of a career ladder program. Ms. Blackwell noted that one of the major obstacles for apprenticeship programs is that providers must pay for them. It may be necessary to find an alternative mechanism to pay for provider training, she said. The group discussed including a background paragraph before each recommendation to provide context.

At the Services Workshop, Dr. Sheldon Wheeler discussed the cost savings associated with supportive housing programs. Ms. Blackwell reported that she and Mr. Grossman had spoken about ways to pay for temporary housing assistance services in HCBS waivers or the Money Follows the Person Demonstration.4 She explained that traditionally Medicaid is prohibited from paying fees associated with room and board. Dr. Strickland noted the importance of building a compelling argument for the benefit of the recommendation in the document presented to the Secretary. Ms. Resnik commented on the need to build public-private collaborations to expand housing options for people with ASD. The group noted that they were proposing temporary housing assistance services while awaiting a housing choice voucher. They agreed that "temporary" would mean 12 to 24 months. Dr. Johnson recommended including language about the importance of supporting universal design and environmental adaptations.

The group then discussed the presentations on peer support at the workshop. Dr. Lisa Crabtree spoke about a peer-support program at Towson University that assists high-functioning adults with ASD who are enrolled at the college. Ms. Julie LaBerge spoke about developing a peer-support program for students in middle school and high school and Mr. Jim Sinclair presented his viewpoint on peer support as a self-advocate. Ms. Blackwell said she was unclear what type of recommendation(s) would stem from this group of presentations, be and noted that Medicaid already funds peer-support services. Dr. Johnson suggested partnering with the Department of Education to examine models of peer support in the delivery of HCBS. She also suggested looking at how peer support could be incorporated in early childhood programs through the Administration for Children and Families. Dr. Gail Houle suggested evaluating existing peer-support programs and expanding those that provide successful outcomes. Ms. McKee suggested recommending that an increased effort be made to bring peer-support programs to children in self-contained classrooms. Ms. Blackwell also noted that Mr. Sinclair's recommendation to include people with ASD in the development of peer-support programs would be noted. Dr. Huang, Dr. Johnson, Dr. Houle, and Ms. McKee were assigned to develop the language for the peer-support recommendation. This would include a paragraph on the compelling history, the recommendation itself, and an impact statement.

Mr. John Martin spoke at the workshop about systems integration for developmental disabilities services in Ohio. Ms. Blackwell noted that had recommended supporting states in their ability to create a single HCBS waiver, promoting flexibility and incentivizing inclusion. Mr. Grossman said that the level of cooperation among the Ohio agencies was remarkable and represented what must be done at the Federal level. To follow their model, a single agency would have to coordinate all developmental disabilities services. Dr. Johnson said that other speakers had cited the need for a point person or central point of contact for state developmental disabilities agencies to interact with the Federal government.  Dr. Rice noted that it might be more feasible to assign a coordinating role to an existing agency rather than create a new entity. The group discussed how to best coordinate all the appropriate Federal agencies and asked for Dr. Susan Daniels' input who suggested they might want to better define their intended goal. She recommended looking into whether existing committees such as the President's Committee for People with Intellectual Disabilities (PCPID)5 or the Interagency Committee for Disability Research (ICDR)6 would be willing to play a role. She promised to send out information on two coordinating committees of which she was aware that address disability issues. Ms. Blackwell asked Mr. Grossman to work with Dr. Johnson and Mr. Claypool to develop a recommendation on Federal coordination with state disabilities agencies.

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Future Activities, Action Items, and Adjournment

The group discussed requesting an additional services workshop in the spring during the December IACC meeting. They then discussed potential speakers for upcoming meetings and Dr. Rice suggested hearing from a representative of one of the committees mentioned by Dr. Daniels. Dr. Daniels summarized that the subcommittee members were proposing to develop a set of recommendations, with compelling history and impact statement, by December 8, 2010. She asked whether the group felt that this timeline was feasible. After discussion, the subcommittee decided to present their recommendations to the full IACC at the January 18, 2011 meeting to allow more time to draft the language. The subcommittee discussed convening again after the full IACC meeting. Ms. Resnik asked what was known about the process Dr. Sebelius would use to consider their recommendations. Dr. Daniels noted that the Secretary would likely be receptive to recommendations from the IACC and suggested making the document as concise and readable as possible. She also suggested keeping recommendations at a high level, leaving adequate room for a number of different solutions to be applied to any given issue. Ms. Blackwell thanked the subcommittee members for their participation and Dr. Daniels noted that she would send out a memo recapping the meeting, action items, and deadlines. The meeting was then adjourned.

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Certification

These minutes of the IACC Services Subcommittee were approved by the Subcommittee on March 29, 2011.

We hereby certify that the foregoing meeting minutes are accurate and complete.

/Ellen Blackwell/
Ellen W. Blackwell, M.S.W.
Services Subcommittee Co-Chair
/Lee Grossman/
Lee Grossman
Services Subcommittee Co-Chair
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References

1 Agenda for the November 8, 2010 Services Workshop

2 Possible topics for future Services Workshop

3 VideoCast for the November 8, 2010 Services Workshop

4 Money Follows the Person Demonstration

5 President's Committee for People with Intellectual Disabilities (PCPID)

6 Interagency Committee for Disability Research (ICDR)

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