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Minutes of the Joint Conference Call of the IACC Subcommittee on Safety and Services Subcommittee on July 11, 2011

The Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and Services Subcommittee convened a joint conference call on Monday, July 11, 2011, from 8:00 a.m. to 10:00 a.m.

In accordance with Public Law 92-463, the meeting was open to the public. Ellen Blackwell and Lee Grossman, Co-Chairs of the IACC Services Subcommittee, and Sharon Lewis, Lyn Redwood, and Alison Tepper Singer, Co-Chairs of the Subcommittee on Safety, chaired the meeting.

Participants:

Office of Autism Research Coordination (OARC) Staff: Susan Daniels, Ph.D., Executive Secretary of  the Subcommittee on Safety and the Services Subcommittee, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH)

Services Subcommittee Members: Ellen Blackwell, M.S.W., Co-Chair of the Services Subcommittee, Centers for Medicare & Medicaid Services (CMS); Lee Grossman,* Co-Chair of the Services Subcommittee, Advance Enterprises, LLC; Sharon Lewis,* Administration for Children and Families (ACF); Christine McKee, J.D.; Catherine Rice,* Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D.); Laura Kavanagh,* M.P.P., Health Resources and Services Administration (HRSA) (representing Peter van Dyck, M.D., M.P.H.)

Subcommittee on Safety Members: Sharon Lewis,* Co-Chair of the Subcommittee on Safety, Administration for Children and Families (ACF); Lyn Redwood, R.N., M.S.N., Co-Chair of the Subcommittee on Safety, Coalition for SafeMinds; Alison Tepper Singer, M.B.A., Co-Chair of the Subcommittee on Safety, Autism Science Foundation (ASF); Lee Grossman, Co-Chair of the Services Subcommittee, Advance Enterprises, LLC; Catherine Rice,* Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D.); Laura Kavanagh,* M.P.P., Health Resources and Services Administration (HRSA) (representing Peter van Dyck, M.D., M.P.H.)

Other IACC Members: Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS)

*Note: Member serves on both subcommittees.

Roll Call, Welcome, and Approval of the Minutes

The IACC Subcommittee on Safety and the Services Subcommittee convened a conference call to discuss the draft letter to HHS Secretary Kathleen Sebelius on seclusion and restraint, as well as the 2011 Services Workshop and town hall scheduled for September. Dr. Daniels welcomed the subcommittee members and conducted roll call. The subcommittees then voted to accept the minutes from their May 19, 2011 joint meeting on restraint and seclusion. Ms. Ellen Blackwell encouraged those who did not attend the meeting to review the meeting minutes and slide presentations for a comprehensive overview of the proceedings.1

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Discussion of the Draft Letter to the Secretary on Seclusion and Restraint

The subcommittee members then reviewed the letter to the Secretary drafted by Ms. Sharon Lewis, co-chair of the Subcommittee on Safety.2 Ms. Blackwell had refined the draft to incorporate comments emailed to her by members of the subcommittees. She noted that while she had tried to integrate all of the feedback, she had not included a formal definition of seclusion and restraint, as suggested by the Centers for Disease Control and Prevention (CDC), because of the slight differences in definitions between agencies. She did include a general summary of seclusion and restraint in the third paragraph of the draft and the CDC representation, Dr. Cathy Rice, said that this was sufficient.

Ms. Singer thanked the subcommittee for their help improving the letter but said that she struggled with the overly formal tone of the letter. She suggested increasing the sense of urgency to convey the fear felt throughout the community in regards to seclusion and restraint. Ms. Lewis said that she felt the overall tone of the letter appropriately balanced the advocacy perspective with the voice of the Federal members. Ms. Blackwell agreed and noted that the letter was more likely to meet the approval of the full committee with a more moderate tone. She noted that the advocacy groups on the IACC were not precluded from writing a concurrent letter on seclusion and restraint. Dr. Rice said that if the letter received the unanimous support of the IACC, it should be so noted in the letter.

Ms. Redwood asked if the action items could be prioritized to highlight the move to reduce or eliminate the use of seclusion and restraint in schools. She also recommended including the need to notify parents in the event that seclusion or restraint was used in the classroom. She recommended moving improved data collection to the lowest level priority. Ms. Blackwell explained that items within the purview of Secretary Sebelius received highest attention in the letter while items that related to the Secretary of Education were given lower billing. She emphasized the importance of data collection to inform policy efforts. Ms. Lewis recommended copying Education Secretary Arne Duncan on the letter and discussed why it was difficult for Federal members to endorse a letter that appeared to support specific legislation.

Ms. Redwood asked that the letter include the recommendation to collect data evaluating the success of programs aimed at reducing seclusion and restraint. She also wanted to ensure that all episodes of seclusion and restraint be reported, not only those that resulted in death. She asked whether the letter could make a stronger statement about the committee's support for legislation reducing seclusion and restraint. Dr. Daniels said that the IACC could make a general statement supporting Federal coordination through legislation, but because of the Federal membership, the committee cannot support specific legislation. Ms. Lewis noted that in terms of priority order, the letter described the committee's general support for legislation at the end because Secretary Sebelius cannot act upon it. 

To illustrate the tragedy that can result from abusive seclusion and restraint, Dr. Rice suggested that letter include a reference to a recent New York Times article on the death of a boy with autism as a result of restraint.3  The committee agreed that this would help to personalize the letter.

Mr. Grossman encouraged the idea of getting advocacy organizations to state their support for the IACC letter. He wanted to avoid the backlash that was felt after the GAO hearings as schools and agencies voiced their concern that the proposed legislation would restrict their use of restraint and seclusion in the face of imminent harm to the child, staff member, or other student. Though the legislation contained no such provision, the misinformation sparked a well-organized effort against the bill. Ms. Lewis noted that a New York study found that staff injury rates increase substantially when restraint is used in the classroom.

Dr. Rice recommended including a focus on researching and disseminating alternative techniques based on positive behavioral interventions and supports (PBIS). Ms. Lewis noted that the Substance Abuse and Mental Health Services Administration (SAMHSA) had done much work in this area and encouraged collaboration between other Federal agencies and SAMHSA. The subcommittee decided to expand the bullet point on developing collaborative guidance to include improvements in interagency technical assistance. Ms. Singer noted a misplaced modifier in the letter that needed to be corrected. Ms. Christine McKee echoed the importance of parental notification and Ms. Lewis suggested adding language stating that "…family members are immediately notified of each seclusion and restraint incident."

The committee discussed other changes to the letter that would reflect that all incidents of restraint and seclusion should be documented, not only those that result in death. Ms. Lewis proposed language that acknowledged current variability in the data collected and the desire for more comprehensive statistics. Dr. Koroshetz asked which agency was responsible for collecting data from nursing homes and Ms. Blackwell said that CMS was in charge of governing the serving and certification function in U.S. nursing facilities. She noted that CMS did not collect data on restraint and seclusion in home and community based settings, now the most popular residential option for people with disabilities. Ms. Lewis said she would incorporate the edits discussed during the call and redistribute the letter to the subcommittee chairs and the Office of Autism Research Coordination (OARC). Dr. Daniels thanked the subcommittees for their hard work and noted that the letter would be reviewed by the full committee at the meeting the following week.

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Discussion of Fall IACC Services Workshop Topics and Speakers

The Services Subcommittee then discussed the Services Workshop and Town Hall meeting scheduled for September 15-16. Ms. Blackwell reviewed the previous Services Workshop on November 8, 2010 that included presentations from Ms. Nancy Thaler of the National Association of State Directors of Developmental Disability Services (NASDDDS), Dr. Bill East of the National Association of State Directors of Special Education, and Dr. Charlie Lakin, a researcher from the University of Minnesota who spoke about autism services in the next ten years.4 Mr. Michael Head and Dr. James Conroy spoke about self-directed services; Dr. Don Clintsman talked about the standardized assessment used in Washington State for people with developmental disabilities; and Ms. Kevin Ann Huckshorn spoke about seclusion and restraint in institutional settings. Ms. Carrie Blakeway spoke about direct service workforce training; Mr. Sheldon Wheeler and Mr. Joe Wykowski spoke about community housing options for people with disabilities; and Mr. Jim Sinclair, Dr. Lisa Crabtree, and Ms. Julie LaBerge gave a panel presentation on peer supports. Finally, Mr. John Martin spoke about the steps Ohio had taken to integrate systems in the state that serve people with ASD. Ms. Blackwell noted that they had wanted to have Mr. Tom Perez or Mr. Sam Bagenstos of the U.S. Department of Justice speak about enforcing the Olmstead decision, which requires the state to serve people with disabilities in the most integrated setting possible. Neither Mr. Perez nor Mr. Bagenstos had been able to attend in November but Ms. Blackwell hoped they could speak at the September workshop. Ms. Lewis had recommended inviting Mr. Michael Wehmeyer from the University of Kansas, as well.

The workshop would be held at the Bethesda North Marriott and the subcommittee discussed how to best incorporate a town hall during the day and a half available. Mr. Grossman noted that a town hall held during the evening would allow more participation from working families. Dr. Daniels said she would check on the logistics to see if having an evening town hall would be feasible.

Ms. Singer recommended including more private sector service providers at the upcoming workshop, noting that the previous one had been heavily weighted toward the public sector. She recommended inviting Ms. Denise Resnik to speak about the service delivery projects at the Southwest Autism Research & Resource Center (SARRC). Ms. Blackwell noted that the previous workshop had focused heavily on the public sector because the intent was to generate recommendations to the Secretary on systems reform. Ms. Blackwell noted that Dr. Rice had mentioned focusing on coordinating services across the lifespan and Mr. Grossman commented on the difficulty finding states that exemplified seamless care across the lifespan.

The subcommittees then reviewed the list of possible topics and made speaker recommendations.5 Mr. Michael Wehmeyer, Mr. Tom Perez, and Mr. Sam Bagenstos were mentioned. For employment and vocational opportunities, Mr. Grossman suggested hearing about ACHIEVA, an advocacy organization in Pennsylvania that runs a very successful supported employment program. He also mentioned organizations in North Carolina and New Jersey that might serve as good examples. The subcommittee discussed having a representative from the Department of Labor discuss the direct service certification program or having a representative from CMS discuss the agency's guidance on employment and vocational opportunities.

Ms. Blackwell said that states had become more interested in managed care delivery systems as a way to reduce costs. Pennsylvania has a small program for adults with ASD using a managed care delivery system and she said it might be useful to have a speaker talk about the state's programs. Mr. Grossman asked whether it would be helpful to include a representative from the insurance industry and the subcommittee discussed including Kaiser or Optima Care of California.

To address criminal justice diversion, Ms. Blackwell recommended hearing about the town of Taunton, Massachusetts, which developed a model that successfully reduced the number of people with disabilities who entered the criminal justice system. Mr. Grossman said that the scope of the issue might make it impossible to tackle at the Services Workshop.

Ms. Blackwell noted that the topic of recreational and service programs for people with autism was raised frequently in the Request for Information on ASD services and said that perhaps they should pursue it further. She addressed the proposed topic of home and community based services characteristics saying that it was a sensitive topic and that the CMS Notice of Proposed Rulemaking had just closed to public comment. Because CMS is still in the midst of the rule-making process, it would be difficult to discuss the topic fully, she said, although many advocacy organizations are very interested in the issue. Again the subcommittee discussed the potential for having Mr. Tom Perez as the keynote speaker and possibly holding the town hall after his presentation.

The subcommittees talked about finding a speaker to address service infrastructure needs and having a Department of Defense representative speak about DoD's early intervention program. Mr. Grossman expressed his interest in hearing a talk on TRICARE. The subcommittee discussed addressing the topic of emergency preparedness and Dr. Koroshetz noted that NIH had recently held a session on emergency preparedness. Ms. Blackwell said that Florida had done a good job putting a state-based plan in place to protect people with disabilities during a natural disaster. She then recommended potentially adding a session on the National Background Program in the Affordable Care Act that requires background checks for people working with older adults. Ms. McKee recommended developing a theme that would bind the whole workshop together and give focus to the event, potentially informing the IACC Strategic Plan and other documents.

Dr. Daniels said that much of the material from the previous Services Workshop had been incorporated into the Strategic Plan and noted that a meeting summary of the September workshop would be produced. Ms. Singer noted that the workshop was an important public forum for families and recommended including more practical information such as how to evaluate individual service programs. Ms. Blackwell explained that CMS evaluates a program using six quality requirements in home and community based waiver programs. Ms. Singer was enthusiastic about including a session on CMS' methods evaluating quality in home and community based services. Ms. Blackwell recommended visiting a map on the CMS website that lists home and community based waivers and the number of individuals with autism they serve.6 She also recommended that parents and advocates read a home and community based services waiver to understand the basics. Ms. Singer noted that a basic class on understanding waivers might be a helpful addition to the workshop. Ms. Blackwell talked about the many different types of waivers and noted that the term "waiver" actually arose from the Secretary "waiving" institutional rules.

Dr. Daniels recommended grouping presentations on home and community based services into a related section of the meeting and asked if the subcommittee saw other themes emerging. Ms. Blackwell noted that all of the presentations related to helping integrate people with disabilities into community life. Mr. Grossman added that the aim was also to maximize opportunities and the potential of individuals. He also emphasized creating a strong lifespan support system, which he said was not coming together in the U.S. Ms. Singer disagreed, saying that successful programs such as SARRC were emerging from the private sector.  She offered "Maximizing Opportunities for Community Inclusion Across the Lifespan" as a workshop title.

Dr. Daniels asked if the workshop should address supported employment and Ms. Blackwell noted that CMS was working on stronger guidance, part of which states that sheltered workshops are not appropriate for people with disabilities. Ms. Singer asked that the Services Workshop be more accessible to the general public, recommending that they define sheltered workshops and explain why the CMS guidance was issued. She said parents needed to really understand what defines the quality of a program. Ms. McKee said that she would look up the names of the nonprofit representatives at the breakout group on education and employment at the White House event on meeting the needs of people with autism. Ms. Blackwell recommended pairing government speakers with private sector speakers on similar topics. Dr. Daniels summarized that the group wanted public and private sector speakers paired to present both a policy perspective with a practical one. The workshop would also include sessions explaining the basics of the service system and program evaluation.

Ms. Blackwell and Mr. Grossman said they would continue to work on planning the workshop and asked for additional input on speakers and private organizations that should be invited to participate. They concluded by noting that the seclusion and restraint letter would be presented to the full committee on July 19, 2011. The meeting would include other services updates including a presentation on the Interactive Autism Network (IAN) wandering survey and an update on the wandering code for the ICD-9. The meeting was then adjourned.

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Certification

The minutes of the July 11, 2011 Joint Conference Call of the Subcommittee on Safety and the Services Subcommittee were approved by the Subcommittees on September 7, 2011.

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

Lyn Redwood /s/
Lyn Redwood, R.N., M.S.N.
Co-Chair, Subcommittee on Safety
Alison Tepper Singer /s/
Alison Tepper Singer, M.B.A.
Co-Chair, Subcommittee on Safety
Sharon Lewis /s/
Sharon Lewis
Co-Chair, Subcommittee on Safety
Ellen Blackwell /s/
Ellen W. Blackwell, M.S.W.
Co-Chair, Services Subcommittee
Lee Grossman /s/
Lee Grossman
Co-Chair, Services Subcommittee
 

References

1 Minutes of the May 19, 2011 IACC Joint Subcommittee Meeting on Seclusion and Restraint

Slides from the May 19, 2011 IACC Joint Subcommittee Meeting on Seclusion and Restraint

2 Draft IACC Letter on Seclusion and Restraint (PDF – 30 KB)

3 New York Times article: A Disabled Boy's Death, and a System in Disarray (June 5, 2011) This link exits the Interagency Autism Coordinating Committee Web site

4 Agenda of the 2010 IACC Services Workshop

5 Possible Topics for the IACC Fall Services Workshop (PDF – 13 KB)

6 CMS Waivers and Demonstrations through Map of States

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