Joint Meeting of the IACC Subcommittee on Safety and Services Subcommittee - May 19, 2011

Topic	Topic Description
Date:	Thursday, May 19, 2011
Time:	10:00 a.m. to 4:00 p.m. Eastern
Agenda:	The Services and Safety Subcommittees of the IACC plan to meet jointly to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD).
Place:	Bethesda North Marriott Hotel and Conference Center 5701 Marinelli Road Bethesda, Maryland 20852
Conference Call:	Dial: (888) 577-8995 Access code: 1991506
Cost:	The meeting is free and open to the public.
Materials:	Meeting materials
Registration:	http://www.acclaroresearch.com/oarc/5-19-11 Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis.
Access:	Metro accessible - White Flint Metro (Red Line) - approximately 1/2 mile walk Parking at the hotel available with validation
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 8185A Rockville, Maryland 20852 Phone: (301) 443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Please Note:	The meeting will also be accessible to the public through a conference call-in number and webcast live. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the conference call or webcast, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098. Individuals who participate by using this electronic service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting. As part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Meeting schedule subject to change.

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The registration desk opens at 9:00 a.m. for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call. The materials for the meeting can be found here.

Time	Event
10:00 a.m.	Roll Call, Welcome, and Approval of the Minutes Susan Daniels, Ph.D. Acting Director Office of Autism Research Coordination, NIMH, NIH Executive Secretary, IACC Safety and Services Subcommittees
10:15 a.m.	Seclusion and Restraint: Background Information Sharon Lewis Commissioner Administration on Developmental Disabilities Administration for Children and Families Co-Chair, IACC Safety Subcommittee
10:45 a.m.	Seclusion and Restraint: An Office of Special Education and Rehabilitative Services (OSERS) Update Alexa Posny, Ph.D. Assistant Secretary for Special Education and Rehabilitation Services U.S. Department of Education
11:15 a.m.	Seclusion and Restraint in Medicaid Programs Ellen Blackwell, M.S.W. Center for Medicaid & State Operations Disabled & Elderly Health Programs Group (DEHPG) Centers for Medicare & Medicaid Services (CMS) Co-Chair, IACC Services Subcommittee Alternatives to Seclusion and Restraint Larke Nahme Huang, Ph.D. Senior Advisor on Children and Families Administrator's Office of Policy Planning and Innovation Substance Abuse and Mental Health Services Administration IACC Services Subcommittee Member
12:00 p.m.	Lunch
1:00 p.m.	Seclusion and Restraint: A Brief Look at State Policies and Practices Charles R. Moseley, Ed.D. Associate Executive Director National Association of State Directors of Developmental Disabilities Services
1:30 p.m.	Seclusion and Restraint: An Epidemic in Our Schools Curtis L. Decker, J.D. Executive Director National Disability Rights Network
2:00 p.m.	Effective Implementation of School-Wide Positive Behavior Support: Reducing the Need for Seclusion and Restraint Robert F. Putnam, Ph.D., BCBA-D Senior Vice President, School Consultation May Institute Technical Assistance Center for Positive Behavior Interventions and Supports
2:30 p.m.	Break
2:45 p.m.	Discussion
4:00 p.m.	Closing Comments/Adjournment

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• Welcome, Roll Call, and Approval of the Minutes
• Seclusion and Restraint: Background Information
  • Questions and Comments from the Committee
• Seclusion and Restraint: An Office of Special Education and Rehabilitative Services (OSERS) Update
  • Questions and Comments from the Committee
• Restraint and seclusion in Medicaid Programs
  • Questions and Comments from the Committee
• Alternatives to Seclusion and Restraint
  • Questions and Comments from the Committee
• Seclusion and Restraint: A Brief Look at State Policies and Practices
  • Questions and Comments from the Committee
• Seclusion and Restraint: An Epidemic in Our Schools
  • Questions and Comments from the Committee
• Effective Implementation of School-Wide Positive Behavior Support: Reducing the Need for Seclusion and Restraint
  • Questions and Comments from the Committee
• Group Discussion
• Closing Comments and Adjournment

The Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and Services Subcommittee convened a joint meeting on Thursday, May 19, 2011, from 10:00 a.m. to 4:00 p.m. at the Bethesda North Marriott Hotel and Conference Center in Bethesda, Maryland.

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, chaired the meeting.

Participants:

Office off 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; Rosaly Correa-De-Araujo, M.D., Ph.D., U.S. Department of Health & Human Services (DHHS), Office on Disability (representing Henry Claypool); Gail Houle,^* Ph.D., U.S. Department of Education; Larke Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Sharon Lewis,^† Administration for Children and Families (ACF); Christine McKee, J.D.; Ari Ne'eman,^{* †} Autistic Self Advocacy Network (ASAN); Denise Resnik,^* Southwest Autism Research and Resource Center (SARRC); Catherine Rice,^† Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D.); Stephen Shore, Ed.D., Adelphi University and Autism Spectrum Consulting; Bonnie Strickland,^† Ph.D., 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; Catherine Rice,^† Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D.); Ari Ne'eman,^{* †} Autistic Self Advocacy Network (ASAN); Bonnie Strickland,^† Ph.D., 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: Attended by phone.

† Note: Member serves on both subcommittees.

Welcome, Roll Call, and Approval of the Minutes

On May 19, 2011, the IACC Subcommittee on Safety and the Services Subcommittee met jointly to examine the issue of seclusion and restraint. Dr. Susan Daniels, Acting Director of the Office of Autism Research Coordination (OARC) and Executive Secretary of both subcommittees, welcomed the members of the two subcommittees and noted that the complexity and importance of the topic warranted the special event. She then conducted roll call.

The minutes from the previous subcommittee meetings, held independently, were approved by the members. Ms. Ellen Blackwell noted that she had sent technical corrections for the Services Subcommittee minutes and Mr. Ari Ne'eman clarified remarks reflected in the minutes.

Mr. Lee Grossman, Co-Chair of the Services Subcommittee, opened the meeting by thanking those attending and stressing that, while not officially tracked, the number of people with ASD who are subjected to restraint and seclusion is alarmingly high, based on informal reporting. The report issued by the Government Accountability Office (GAO) cited hundreds of allegations of abuse using restraint and seclusion, some resulting in death.¹ There are no Federal laws that address the use of restraint and seclusion in schools and currently only 23 states have meaningful regulations on the topic, he said. Of these, only 13 states ban restraint that impedes breathing and only 10 states ban mechanical and chemical restraint. Mr. Grossman said that they would use the updates from the Federal agencies on their activities related to restraint and seclusion to develop a set of recommendations made to the full committee. From there, he hoped the IACC would send the recommendations to Secretary Sebelius to act upon.

Ms. Singer, Co-Chair of the Subcommittee on Safety, spoke next, emphasizing the gravity of the situation and urging the attendees to break down the issue of restraint and seclusion into manageable, actionable steps. She noted that in the past, no real action was taken because people were overwhelmed by the magnitude of the problem. The Subcommittee on Safety had therefore decided to focus on two issues where they felt they could enact meaningful change: submitting specific regulations based on the Children's Health Act of 2000² and gathering data from the Department of Education to determine potential areas of collaboration to address safety issues in school settings. She asked the meeting speakers to speak to these two points if possible.

Seclusion and Restraint: Background Information

Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD), Administration for Children and Families (ACF)

The members then heard remarks from Ms. Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD) and Co-Chair of the Subcommittee on Safety. Ms. Lewis gave a brief history of restraint and seclusion, noting that as far back as 1839, John Connolly, superintendent of the Middlesex County Asylum, worked to successfully eliminate the use of mechanical restraints on residents. This belief that restraints could and should be eliminated was not popular in the United States during the mid- to late-1800's, where most psychiatrists viewed the use of physical restraint as an accepted therapeutic treatment. Ms. Lewis noted that this history was important because it demonstrated that a basic cultural and attitudinal shift would have to occur to eliminate restraint today, requiring respect and understanding of the needs of individuals with disabilities and their right to self-determination. She said that in her former role working with the U.S. House of Representatives Committee on Education and Labor and in her present role at the Administration for Children and Families (ACF), she had heard hundreds of stories of untrained staff using dangerous restraint techniques against children and adults with intellectual disabilities. She shared one such story about a 7-year-old girl who was violently disciplined by a teacher.

She noted that the use of restraint and seclusion had recently garnered significant public attention because it is largely unregulated and unmonitored in many areas. Without Federal legislation, families must rely on an uneven "patchwork" of local and state laws and regulations. The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)³ states that public funds should only be provided to institutional programs, residential programs, and other community programs that use physical restraint solely when necessary to prevent immediate physical harm to the individual or others. However, the DD Act does not address Federally funded programs and services. She noted that the Children's Health Act of 2000 did establish rules regulating restraint and seclusion in hospitals, nursing facilities, and non-medical community-based facilities for children and youth. She said that restraint should be used only to ensure immediate physical safety and staff should be thoroughly trained and certified.

Ms. Lewis then described the definition of different forms of restraint – physical restraint refers to any physical method of restricting an individual's movement, mechanical restraint involves the use of an object of device such as a harness, handcuffs, or duct tape, and chemical restraint is the use of medication to control behaviors or to restrict freedom of movement. She noted that the Children's Health Act prohibits mechanical and chemical restraint and restricts physical restraint to emergency circumstances. She underscored that every incident involving restraint and/or seclusion is a failure of the system to appropriately address the behavioral support needs of the individual. It also represents a failure to properly train staff about evidence-based alternatives. She said there is little evidence supporting the effectiveness of restraint to change behavior.

Seclusion is different from time-out which when used properly to calm and comfort can result in positive behavior change. There is no evidence supporting the use of seclusion and it has been shown to have negative effects such as post-traumatic stress disorder. In addition, physical restraint is likely to be used to force an individual into seclusion. She noted that physical restraint is sometimes necessary, but that it should only be used by trained personnel and then limited to the method presenting the least amount of risk for the shortest amount of time needed. She said that a review of 109 articles spanning 35 years showed little if any evidence for the use of restraint and seclusion to reduce negative behavior.

In order to reduce the use of restraint and seclusion, Ms. Lewis said that leaders must change the culture and attitudes within an organization. It is necessary to collect data on restraint and seclusion and use the data to inform staff and evaluate incidents. Environmental conditions must be improved and other ways to manage behavior in the environment must be introduced. Staff must be trained in de-escalation and positive behavioral supports and individualized positive behavior support plans should be put in place for individuals. At the core, staff must understand that restraint and seclusion will not change negative behaviors and should be reduced to the greatest degree possible, she said.

Questions and Comments from the Committee

Ms. Blackwell commented on how interesting it was that Dr. Connolly had such progressive ideas nearly 200 years ago. Dr. Huang noted that architectural plans for hospitals still often include a seclusion room and that organizations like the American Architecture Association should be made aware that this is no longer a desirable feature. Ms. Lewis added that locked seclusion settings should be eliminated in favor of carefully constructed time-out areas that are open and designed to have a calming influence. She said that researchers were conducting interesting work on creating positive environments to manage problem behaviors. Dr. Stephen Shore supported research into managing behavior through environmental modifications. Dr. Bonnie Strickland asked if provisions for enforcing guidelines in the Developmental Disabilities Act existed elsewhere. Ms. Lewis noted that no Federal legislation addresses the use of restraint and seclusion in schools and therefore it is difficult to address the issue consistently under the current law. Ms. Blackwell asked Ms. Lewis about the development of the Keeping All Students Safe Act and the current status of the legislation. Ms. Lewis said that Representative George Miller, Chairman of the House Education and Labor Committee, became interested in addressing the use of restraint and seclusion after hearing accounts from his constituents and reading a report on the issue from the National Disability Rights Network. He then led an investigation analyzing state policies and procedures on restraint and seclusion in schools, resulting in a report from the Government Accountability Office. Chairman Miller's office then worked with community stakeholders, the Department of Education, and other members of Congress to develop legislation that would build on the Children's Health Act to develop policy guidelines for the use of restraint and seclusion in schools. The proposed legislation would work to ensure that restraint only be used in emergency circumstances that represent imminent danger for the individual or the staff.

Dr. Rice asked if any best practices had been identified for bringing about the culture change necessary to significantly reduce the use of restraint and seclusion within an organization. Ms. Lewis said that the existing studies were small and that more work was needed to support recommendations in educational settings. Dr. Rice noted that such research recommendations should be kept in mind for future Strategic Plans if the committee is reauthorized. Mr. Grossman asked about specific recommendations to the Secretary and Ms. Lewis noted that the Subcommittee on Safety had discussed the importance of hearing the status of the Department of Education's data collection efforts.

Seclusion and Restraint: An Office of Special Education and Rehabilitative Services (OSERS) Update

Alexa Posny, Ph.D., Assistant Secretary for Special Education and Rehabilitation Services, U.S. Department of Education

Dr. Alexa Posny, Assistant Secretary of the Office of Special Education and Rehabilitation Services (OSERS), then presented an update on her office's activities related to restraint and seclusion. She reviewed the timeline of events: In 2009, the GAO issued a report on the topic that noted the lack of Federal regulation and the absence of reliable national data on the use of restraint and seclusion in schools. The report also indicated that many of the cases of abuse could be linked to untrained or undertrained staff. The U.S. Congress held a hearing on May 19, 2009, which contributed to the drafting of proposed Federal legislation. On July 31, 2009, Secretary of Education Arne Duncan sent letters to the Chief State School Officers urging each state to review its current policies and guideline regarding the use of restraint and seclusion and revise or develop them as necessary to ensure the safety of students.⁴ He highlighted the role of positive behavioral interventions and supports (PbIS) and said that the Office of Elementary and Secondary Education would contact each state to discuss the state's plans to ensure the proper use of restraint and seclusion. A second letter was sent from Mr. Duncan to the Chairman of the Congressional Committees applauding their interest in addressing the serious issue, but reminding the members of Congress that the Department of Education is not authorized to perform functions outside data collection without Federal legislation. The letter also contained nine principles Mr. Duncan believed would be useful to consider in the context of any legislation.

In February 2010, the Department of Education released a summary of state policies on restraint and seclusion that indicated great variation across the U.S. Dr. Posny said that oversight varies depending on the state, as does the scope and impact of the laws. Based on the information collected, 31 states have regulations on restraint and seclusion, while 19 have none. She noted that her home state of Kansas currently has no regulations on restraint and seclusion because it could not come to a consensus on appropriate action. Laws vary greatly – five states regulate the use of restraint but not the use of seclusion and one state regulates the use of seclusion without regulating the use of restraint. She reported that only eight states specifically prohibit the use of prone restraint which can inhibit breathing. Training requirements also vary, with eight states offering training and technical assistance to school staff. Dr. Posny said that an update on this information would be available on the Positive Behavioral Interventions & Supports Center web site in fall 2011.⁵ She noted that the reliability of data increases as people gain a better common understanding of the definitions of restraint and seclusion.

The Office for Civil Rights has also begun collecting information about restraint and seclusion from approximately 7,000 school districts. It seeks to determine the number of students subjected to physical restraint, mechanical restraint, and/or seclusion annually. This information will be released in fall 2011, as well. Dr. Posny said that OSERS tried to give precise definitions – physical restraint does not include temporary touching or holding of the hand and seclusion does not include time-out, defined as a behavior management technique involving monitored separation of the student in an unlocked setting.

She reported that separate versions of the restraint and seclusion legislation were submitted to the House and Senate in 2010 (H.R. 4247 - Keeping All Students Safe Act⁶ and S. 2860 – Preventing Harmful Restraint and Seclusion in Schools Act⁷). Only the House bill (H.R. 1381)⁸ has been introduced in the present session of Congress. The bill calls for limiting the use of restraint to instances that represent an immediate risk to the physical safety of the child or others at the school. She noted that as a former special education teacher, she had needed to restrain a student who would intentionally run into the road. No companion bill has yet been introduced in the Senate.

Dr. Posny stressed the use of Positive Behavioral Interventions and Supports, which she defined as "a broad range of systematic and individualized strategies for achieving important social and learning outcomes while preventing problem behavior." She said that the use of PBIS had been shown to reduce the use of restraint and seclusion as well as the number of suspensions and expulsions in schools. She explained that PBIS demonstrates the appropriate behavior to use in place of a problem one, while restraint and seclusion does not.

Currently, the Office of Special Education is working with the Substance Abuse and Mental Health Services Administration (SAMHSA) to create a guidance document on restraint and seclusion in schools organized around the nine principles outlined by Secretary Duncan. These include that:

• Any behavioral intervention must be consistent with the child's right to be treated with dignity and to be free from abuse, regardless of the child's educational needs or behavioral challenges.
• Physical restraint and seclusion should never be used as punishment or discipline, nor in a manner that restricts a child's breathing.
• Every instance of physical restraint and seclusion should be appropriately monitored to ensure the safety of the child, other children, teachers, and other personnel.
• Teachers and other personnel should be trained regularly on the appropriate use of restraint and seclusion and the use of effective alternatives, such as positive behavioral intervention and supports.
• Parents should be informed of the policies on restraint and seclusion at their child's school or other educational setting, as well as applicable State or local laws.
• Parents should be notified promptly following the use of restraint or seclusion on their child, and any such use should be documented in writing.
• Policies regarding the use of restraint and seclusion should be reviewed regularly and updated as appropriate.
• Legislation should apply to all children, not just children with disabilities.
• Legislation should promote the collection of data that would enable teachers, staff, and other educational personnel to understand and implement the preceding principles.

Dr. Posny said that OSERS is also working jointly with SAMHSA to develop a technical assistance document. The office will also be working to help with the reauthorization of several pieces of legislation: the Individuals with Disabilities Education Act (IDEA), the Elementary and Secondary Education Act (ESEA), and the Workforce Investment Act. Dr. Posny finished by reviewing the fundamental goals of the Department of Education for all students, which begins with the aspiration that all children will acquire the same essential knowledge and skills.

Questions and Comments from the Committee

Ms. Singer thanked Dr. Posny for her presentation and asked whether the Department of Education could put together sample legislation for state lawmakers, in addition to the guidelines being developed for schools. Ms. Lewis said that the guidance document in development as well as the proposed Federal legislation could serve as a good guide at the state level. Mr. Grossman asked Dr. Posny to speak about the Workforce Investment Act. Dr. Posny explained that OSERS is unusual because it serves people with disabilities from birth to end-of-life; the Workforce Investment Act is intended to help people with disabilities develop the skills to become gainfully employed as an adult. Ms. Singer asked what role the IACC could play to support the drafting of guidelines for schools and state legislatures. Dr. Posny said that the committee's support of the completed guidelines would be a valuable gesture. The guidelines are currently undergoing internal review and Dr. Posny said she hoped they would be released before the start of the 2011-12 school year.

Mr. Ne'eman asked Dr. Posny whether the Department of Education would provide guidance on the inclusion of restraint in a student's Individualized Education Plan (IEP), noting that its inclusion could encourage use. Dr. Posny spoke about the complexity of issue – including restraint may inadvertently promote its use, but omitting it could deter use even under life-saving circumstances. She noted that there have never been restrictions on what could be included in an IEP and that lawmakers on Capitol Hill were grappling with the same set of issues. Ms. Lewis was asked about the probability of a Senate bill being introduced and about the obstacles that kept the bills from being passed previously. Ms. Lewis noted that in the previous session, a House bill was passed that prohibited the inclusion of restraint and seclusion in IEPs. The Senate bill, which never came to a vote, would have allowed the inclusion of restraint in an IEP. Time ran out before a compromise could be agreed upon. The sponsor in the Senate, Christopher Dodd, is no longer serving, which could delay the process while a new sponsor is found, she said. Ms. Lewis said that it was her understanding that Senator Tom Harkin and Representative Miller are interested in including components of the restraint and seclusion bill in the reauthorization of the Elementary and Secondary School Act. Dr. Huang said that OSERS should examine the data to determine whether the students being subjected to restraint and seclusion have an IEP because she suspected many of them did not. By addressing restraint and seclusion as an issue for the entire student body, she suggested it might be possible to avoid the contentious IEP issue. Ms. Lewis said that data was being analyzed to determine which individuals had an IEP or 504 Plan outlining accommodations.

Restraint and seclusion in Medicaid Programs

Ellen Blackwell, M.S.W., Center for Medicaid & State Operations, Disabled & Elderly Health Programs Group (DEHPG), Centers for Medicare & Medicaid Services (CMS)

Ms. Blackwell then spoke about rules regulating restraint and seclusion in Medicaid programs. She provided a brief overview of the Children's Health Act of 2000. Signed into law by President Bill Clinton, the legislation addresses the needs of children with a variety of disabilities including autism. Parts H and I of the law directly relate to seclusion and restraint. She noted that Title 1 created the Interagency Autism Coordinating Committee. Section 3207 of the Children's Health Act specifies circumstances when seclusion or restraint may be used in healthcare facilities receiving Federal funds. It also requires staff training on seclusion and restraint, as well as alternatives, and specifies that the Centers for Medicare & Medicaid Services (CMS) must be notified if a death occurs as a result of restraint or seclusion. Section 3208 of the Children's Health Act outlines restraint and seclusion in public or private non-medical community based facilities for children and youth.

The issue of restraint and seclusion first caught the attention of Congress in late 1998 and early 1999 when a series of articles called "Deadly Restraint" was published in The Hartford Courant. The pieces investigated deaths of children with disabilities that had been attributed to seclusion and restraint. An analysis revealed that 50 to 150 children were being killed every year and that restraint and seclusion was largely being used for discipline and staff convenience. Congress requested that the GAO conduct an investigation and the report was issued in 1999.⁹ The report recommended that CMS (then the Health Care Financing Administration) issue policies that would regulate restraint and seclusion in facilities using Federal funds. It also recommended improving staff training requirements. As a result of the report, CMS issued a description of patients' rights and conditions of participation in facilities participating in CMS programs. The agency also issued an interim final rule on the use of restraint and seclusion in psychiatric residential treatment facilities for individuals under age 21. It also issued an amendment to previous regulations.

The interim final rule, issued in 2001, stated that restraint and seclusion can only be used in emergency situations to ensure the safety of the person or others. It must end when the situation is resolved regardless of the time remaining on the medical order and the least restrictive intervention must be used. "As needed" restraint and seclusion orders are prohibited, as is the simultaneous use of restraint and seclusion. The regulations outlined in the interim rule apply to psychiatric residential treatment facilities (PRTFs) that serve individuals under 21. Ms. Blackwell explained that PRTFs are non-hospital facilities that provide inpatient psychological services to children. The interim final rule also stipulates that parents must be notified and two debriefing sessions must be held immediately following the incident. It also includes regulations on staff education and training competencies.

The regulation was open for public comment and a State Medicaid Director letter was issued which served as an official policy clarification. Since 2001, four deaths have been reported in PRTFs, only one of which was a direct result of restraint. Ms. Blackwell said that this represented a marked improvement from the late 1990s. She explained that CMS regulates hospitals, including psychiatric hospitals, intermediate care facilities for the mentally retarded (ICFs/MR), nursing facilities, and PRTFs. The latter are covered under a Social Security benefit called Medicaid's Early, Periodic, Screening, Diagnostic and Treatment (EPSDT) benefit. States are not required to provide care to children in PRTFs and may instead elect to use other facilities not regulated by the Medicaid program. Ms. Blackwell said that it is unclear how many states use the PRTF benefit for children. There are more than 6,000 ICFs/MR in the U.S. and regulations prohibit the use of behavior management for discipline, staff convenience, or as a substitute for active treatment. Timeout rooms are approved and physical restraints can be put in a person's plan or used as an emergency measure. In 2006, the Office of the Inspector General (OIG) issued a report detailing the use of restraint and seclusion in hospitals. CMS is currently collecting data on restraint and seclusion in hospitals and developing tools for follow-up after incidents. Ms. Blackwell reviewed the list of settings that are funded by the Medicaid program but that are not monitored by CMS, including home and community-based settings (private home, group homes, residential care facilities, etc.), residential treatment facilities for children, assisted living facilities, schools, and other facilities such as day habilitation programs and adult day programs.

Ms. Blackwell reviewed the laws that support Medicaid's involvement in schools, noting that Section 1903(c) of the Social Security Act requires that the Medicaid program pay for covered services included in the child's IEP or IFSP (Individualized Family Service Plan). These could include speech therapy, occupational therapy, rehabilitative services, etc. As a result, Medicaid has a large presence in the school setting. Ms. Blackwell then reviewed how home and community-based services (HCBS) are funded through Medicaid and explained that states applying to CMS for HCBS waivers must provide assurances that safeguards are in place to protect the health and welfare of the people enrolled in the waiver. One section of the waiver application (Appendix G-2) requires states to describe their incident management system, oversight procedures, and specifics about restraint and seclusion, including what types of restrictive interventions are permitted and the circumstances under which they are allowed.

Ms. Blackwell then spoke about how CMS monitors health and welfare if states are providing HCBS under their state plan and not through HCBS waivers. Section 1915(i) of the Medicaid statute requires states to report on their state plan to identify and prevent incidents of abuse, neglect, and exploitation, including the use of restraints. Ms. Blackwell concluded by noting that CMS is part of a cross-HHS workgroup set up to promote consistency in defining, funding, and overseeing HCBS across government programs (section 2402 of the Affordable Care Act). This portion of the legislation may provide an opportunity to generate additional regulations on restraint and seclusion, she said. She then directed those in attendance to a link for Medicaid waivers and demonstrations and urged everyone to identify his or her states guidelines on restraint and seclusion in HCBS programs. She also presented a list of CMS regional offices.

Questions and Comments from the Committee

Dr. Bonnie Strickland asked how CMS enforces regulations on restraint and seclusion and Ms. Blackwell said that service settings monitored by CMS must report deaths related to seclusion and restraint. Non-fatal incidents are not reported but complaints about such incidents can be filed through different channels in the state. Ms. Blackwell spoke about the difficulty regulating the use of restraint and seclusion as more services are moved into home and community-based settings. Ms. Lewis said that it would be critical for home and community-based providers to implement person-centered planning as a way to address problem behaviors on an individual basis. Dr. Larke Huang said that data on deaths from restraint and seclusion lacked consistency across states and she suggested that the overall number of deaths may be underreported. Deaths that would be attributed to restraint and seclusion in one state may not be in another, she said. Ms. McKee asked whether the circumstances cited in state waivers for the permissible use of restraint and seclusion aligned with the ideals set out by Dr. Posny. Ms Blackwell said that it varied by state and Ms. Lewis said that the most progressive examples would probably be the work done by SAMHSA in mental health facilities to reduce restraint and seclusion.

Alternatives to Seclusion and Restraint

Larke Nahme Huang, Ph.D., Senior Advisor on Children and Families, Administrator's Office of Policy Planning and Innovation, Substance Abuse and Mental Health Services Administration (SAMHSA)

Dr. Huang spoke about the SAMHSA initiative to reduce and eliminate the use of restraint in mental health facilities. She reiterated that 50 to 150 Americans die annually from the use of restraint and seclusion and noted that their use should be viewed as a treatment failure. This was a paradigm shift from her training three decades ago when restraint and seclusion was thought to be a therapeutic process used across the lifespan. The use of restraint and seclusion may be detrimental to the recovery of someone with a mental illness and also traumatizing for the individual as well as staff, she said. Programs funded by SAMHSA have shown that restraint and seclusion can be successfully eliminated from mental health treatment facilities and forensic facilities. She also noted that there is a business case for eliminating restraint and seclusion, citing liability from client and staff injuries and opportunity costs from lost treatment time. Sadly, news stories of deaths from restraint and seclusion have not stopped since The Hartford Courant, she noted.

She then reviewed SAMHSA's definition of seclusion and restraint, shared by CMS. Seclusion is the involuntary confinement of a patient alone in a room or area from which the patient is physically prevented from leaving. This differs from timeout where a person is able to leave. Restraint is any method or device that immobilizes or reduces the ability of a patient to move. Chemical restraint is medication that is used outside of a treatment plan to control the individual. Dr. Huang provided context for SAMHSA's initiatives – in 2000 the Children's Health Act addressed restraint and seclusion for inpatient and community-based facilities. In 2003, SAMHSA held a summit jointly with the National Association of State Mental Health Program Directors (NASMHPD) and issued a call to eliminate restraint and seclusion in behavioral healthcare. In 2003, SAMHSA created a national action plan to reach this goal and begin data collection efforts.

Dr. Huang said that restraint and seclusion is viewed by SAMHSA as a safety intervention of last resort and it aims to reduce (and ultimately eliminate) its use in mental health and substance abuse treatment by providing training and technical assistance to states, providers, facilities, consumers, and families. This can only be accomplished through a multi-level process, Dr. Huang said.

She then presented data on restraint and seclusion in inpatient facilities from 2002 to 2007. There was an overall decrease in the number of hours of restraint over that time period but taken by age group, the percentage of clients under 12 who had been restrained increased slightly. Eighteen to 24-year-olds experienced the highest percent of time in restraint but the percent of clients restrained remained relatively unchanged over the time period. The hours in seclusion decreased for all age groups except those 18 to 24 years of age. The percent of clients secluded remained stable in all age groups except those 12 and under, who had the highest percent of clients secluded (about 18 percent). Data collected in 2010 showed that, overall, the percent of clients being restrained and secluded remained relatively unchanged.

Dr. Huang then reviewed the key activities at SAMHSA related to seclusion and restraint. Starting in 2004, SAMHSA funded grants in 16 states to focus on alternative practices and SAMHSA is now using the lessons learned on the state level to inform its national training and technical assistance efforts. The agency also distributed $36 million in PAIMI program grants in 2010 (Protection and Advocacy for Individuals with Mental Illness). The National Technical Assistance Center, SAMHSA's coordinating center for restraint and seclusion alternatives, continues to emphasize the "Six Core Strategies" designed to reduce seclusion and restraint, which emphasizes de-escalation, developing crisis plans, identifying triggers, changing organizational cultures, and reducing coercive care. With the help of consumers, SAMHSA developed a roadmap training curriculum and a training video. SAMHSA also funds the National Disability Rights Network to provide technical assistance to protection and advocacy groups performing investigations of cases of seclusion and restraint, and the National Center for Trauma-Informed Care.

Dr. Huang then presented a sample intervention using the "Six Core Strategies." This sample plan focused on leadership for organizational change, rigorous debriefing following incidents of seclusion and restraint, and the use of data to inform practice. The plan also highlighted workforce development, the use of prevention tools like crisis plans and comfort/sensory rooms, and the full inclusion of consumers and families. She noted that SAMHSA has developed a set of issue briefs that examine findings about restraint and seclusion policies.

Dr. Huang said that SAMHSA has been unable to act on Part I of the Children's Health Act, which relates to the regulation of restraint and seclusion in non-medical children's residential setting, because of the ambiguity around covered facilities, training and monitoring responsibility, and lack of money for implementation. She recommended this as one area that the IACC could bring to the attention of the Secretary.

She then summarized the business case to reduce seclusion and restraint in institutions, noting that one hour of restraint claims about 12 hours of staff times to manage and process the event. There are opportunity costs because the client is not receiving treatment during periods of restraint and seclusion and potential liability and legal costs if a client or staff member is injured. Staff turnover and absenteeism is also higher when restraint and seclusion is used. When restraint and seclusion is reduced or eliminated, clients experience fewer injuries, shorter stays, decreased rates of re-hospitalization, less medication use, and higher levels of functioning when they are discharged.

Dr. Huang described some of the concerns and issues impeding progress including data challenges, difficulty with dissemination and uptake of effective strategies, the proliferation of unlicensed/unregulated residential treatment centers for children, the challenge of expanding SAMHSA's reach into schools, and the need for more coordination with CMS around regulatory actions. She also stated the need to strengthen linkage with trauma-informed care approaches. She introduced the recent issue briefs on "Promoting Alternatives to the Use of Seclusion and Restraint" and reiterated that SAMHSA was working with the Department of Education to create a guidance document for schools building on the techniques that have been shown effective in mental health facilities.

Questions and Comments from the Committee

Ms. Redwood asked where the business model briefs could be accessed and was directed to a weblink.¹⁰ She noted that SAMHSA's view that restraint and seclusion could be completely eliminated seemed to differ from that of the Department of Education. Asked what percentage of the children being served by SAMHSA had an ASD diagnosis, Dr. Huang estimated that approximately 5 percent had ASD but noted that SAMHSA would only serve children with ASD who also had an emotional, behavioral, or addiction disorder. Dr. Strickland noted her surprise that such a high percentage of children under 12 were being restrained and secluded and Dr. Huang said that many youth were being diverted into other sectors such as child welfare, foster care, and juvenile justice. As a result of this division, she suggested that the population coming into treatment facilities versus justice-supported facilities might differ significantly. Ms. Lewis added that anecdotal evidence from schools suggest that teachers are more willing to restrain a smaller child and that in the classroom most children being restrained were between the ages of 3 and 9. Dr. Rice asked about the requirement that made the inpatient data available and Dr. Huang said that hospitals are required to report instances of restraint and seclusion under the Joint Commission on Accreditation of Hospitals.

Ms. McKee suggested that training Board Certified Behavior Analysts (BCBAs) should be involved in the effort to reduce restraint and seclusion. Ms. Redwood asked whether SAMHSA was serving a greater number of children with mental health disorders since the early 2000's and Dr. Huang confirmed that they were and that there was increased focus on young children. Ms. Lewis added that the Administration on Children and Families has been working with the Department of Education to provide a holistic approach to mental health and behavioral support from early childhood through high school. Dr. Walter Koroshetz asked if the reporting requirement might deter institutions from taking on the most difficult clients. Dr. Huang said that all the data presented was from state facilities that cannot refuse to treat an individual. However, this could be a subject to study in private facilities. Dr. Koroshetz commented that people making the facilities financial decisions were often most leery of reporting requirements. Dr. Huang said that this was the impetus for creating the business case monograph.

Seclusion and Restraint: A Brief Look at State Policies and Practices

Charles R. Moseley, Ed.D., Associate Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Ms. Blackwell introduced Dr. Charles Moseley, Associate Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS). Dr. Moseley spoke about state practices and strategies related to seclusion and restraint. As background, he noted that about 1 million people with developmental and intellectual disabilities receive support through their state developmental disabilities (DD) agency. Of these, approximately 36 percent have co-occurring developmental disabilities and mental illness. Approximately 11 percent have autism, ranging from slightly below 4 percent in Wyoming to 20 percent in New Jersey. He noted that people live in a wide variety of both specialized and typical homes in the community. Twenty-seven percent of individuals served by state DD agencies live in a parent or relative's home, 26.2 percent live in a group home, and 20 percent live in specialized institutional facilities. He noted that Dr. Charlie Lakin of the University of Minnesota has also documented the steady increase in the percentage of people living in a family member's home.

Over half of people served by state DD agencies take medications for mood disorders, anxiety, behavior problems, or psychotic disorders. Notably, people with ASD are more likely to receive medication even though they are less likely to be diagnosed with a mental illness. Approximately twice as many people with ASD receive psychotropic medication when compared to the rest of the population being served. He noted that people with autism are significantly more prone to self-injury and disruptive/destructive behavior making it more likely that restraint and seclusion will be used. He said that improving supports for people with challenging conditions was a focus for NASDDDS, in addition to being of personal importance to him. He recounted a personal story illustrating how changing a time-out room into a library brought about positive change for both the staff and the clients.

He noted that NASDDDS produces regular newsletters and convenes conferences and symposium; a previous symposium focused entirely on autism. NASDDDS conducts research on restrictive procedures (restraint and seclusion) and has posted the state guidelines on the use of restrictive procedures for every state on the organization's website.¹¹ The use, reduction, and elimination of restraint and seclusion is of significant concern to NASDDDS, Dr. Moseley said. Its use is often traumatizing and data indicate that people with developmental disabilities are a particularly vulnerable group – 90 percent will experience sexual abuse in their lifetime and they are 4 to 10 times more likely to be victims of crime than are members of the general population. While in the past, restraint and seclusion was seen as therapeutic that has been shown to be false, potentially resulting in trauma and triggering memories of a past trauma. Restraint has been used for the wrong reasons including the failure of other treatment methods, staff convenience, and power struggles. Its use can lead to injuries or death and it significantly undermines the ability to develop the positive relationships necessary for successful treatment. The idea of trauma-informed care has gained support in the field as people recognize the amount of trauma typically experienced by someone with developmental or intellectual disabilities. Positive behavioral support strategies are also gaining ground across the country, Dr. Moseley said, and there has been broad-based social change in several states including Ohio, Maryland, and Vermont, where he formerly served at state DD director.

In Vermont, all state institutions were closed in 1993 and services were moved entirely into the community. The shift to a community-based service delivery system required a new statutory and regulatory framework. During the subsequent rewrite, members of the state DD agency put together clear regulations around the use of restraint and prohibited seclusion in any form.

In 2008, the Maryland DD director instituted the Maryland DDA Restraint Elimination Initiative, which established a joint task force with 18 members from government, provider, and advocacy groups. The task force created a report with specific recommendations that was disseminated in July 2010. These recommendations were based on the Six Core Strategies developed by Kevin Ann Huckshorn of Delaware and the NASMHPD.

In Ohio, a statewide initiative was launched by DD Director John Martin in 2008. It was intended to bring about lasting change that would shift the focus from using aversive measures to cultivating relationships that support good lives. The initial focus was aimed at shifting beliefs through training tools and resources. A write-up of Ohio's Positive Culture Initiative is available on the NASDDDS website.¹² The State adopted John McGee's "Gentle Teaching" approach and instituted an overall program of trauma-informed care while educating people on the dangers of restraint and seclusion. This multi-level approach included a Behavior Support Advisory Committee that recommended a ban on prone restraints in 2008, created a Crisis Intervention and Prevention Assessment Tool in 2009 and collected data on restraint and seclusion use from 2009-2010. Currently, they are developing a guidebook outlining Ohio's approach toward a positive culture.

Dr. Moseley concluded by affirming state DD directors' commitment to reducing the use of restraint and seclusion and reminded the committee that it was still a work in progress. He encouraged members of the committee to send him information about anything innovative or interesting that they might find.

Questions and Comments from the Committee

Ms. Blackwell asked how state developmental disabilities directors were trying to cope with diminishing state budgets, particular related to training on seclusion and restraint. Dr. Moseley said that the state budget crisis was devastating because training and non-direct support services are the first items cut from the budget. This has also resulted in significant staff reduction at state agencies – the quality assurance program in one agency was reduced from 14 people to two. Dr. Moseley said that the College of Direct Support was providing assistance but that a more focused effort to train first-level supervisors is necessary. States are cutting provider reimbursement rates by 10 to 15 percent, he noted.

Ms. Singer asked Dr. Moseley to speak about severely affected children with self-injurious behaviors who may need some form of restraint in order for them to remain in less restrictive environments. Dr. Moseley strongly objected to the idea that restraint is necessary in certain cases and said that there are viable alternatives to seclusion and restraint that should be used.

Seclusion and Restraint: An Epidemic in Our Schools

Curtis L. Decker, J.D., Executive Director of the National Disability Rights Network

Ms. Blackwell then introduced Mr. Curtis Decker, Executive Director of the National Disability Rights Network (NDNR). His organization provides legally-based advocacy services to people with disabilities on any disability-related issue. The network operates in every state and is funded by several agencies represented on the committee. NDNR has a long history of addressing restraint and seclusion that initially focused on institutions and children's residential facilities. In 2000, they started hearing anecdotes about children being restrained and secluded in schools and began to investigate. In 2009, NDRN published a report on the use of restraint and seclusion in schools that suggested its use was more commonplace than expected. Spurred on by the NDNR report and other evidence, the Government Accountability Office conducted its own investigation and issued a report. Subsequently, the White House held a meeting on the matter and a bill on restraint and seclusion was drafted and passed in the House of Representatives. A similar bill was introduced in the Senate but ran into hurdles and the measure ultimately died. Mr. Decker said that the course of events raised questions about how the disability community can work together most effectively to advance an agenda.

Mr. Decker said that NDNR had developed a guide for reducing restraint and seclusion in schools based on best practice principles for institutions and residential facilities. Although it was sent to the Department of Education General Council two years ago, there had been no action on the guidelines, which he attributed to the inclusion of policy recommendations. He expressed frustration at the inaction and noted that although the White House had held a meeting on bullying, the matter was being dealt with in isolation and restraint and seclusion was not addressed.

He reviewed the recommendations of the guide which included mandatory parental notification and data collection to measure the scope of the problem. He discussed the difficulties with trying to ban restraint outright because many took the view that it must be available as an option for intervening in an emergency situation. He then noted that if regulations from the Children's Health Act of 2000 had not yet been put in place, creating regulations for schools would be similarly road-blocked. He challenged OSERS to hold a summit on restraint and seclusion and urged it to develop a set of policies. He spoke about the difficulty trying to get regulations enacted on a school-district-by-school-district basis and discussed the likelihood that Congress would pass a Federal law regulating restraint and seclusion. He said that Congressman Miller had reintroduced the Keeping All Students Safe Act but that an initial co-sponsor had not joined. Senator Harkin would soon introduce a bill into the Senate but the bill prohibited the inclusion of restraint and seclusion in a child's IEP and therefore would have little chance of passing.

He summarized the controversy over IEP inclusion saying that the NDNR and other advocacy groups felt that restraint and seclusion has no place in an IEP because it is intended as a therapeutic document and seclusion and restraint has been proven to not be therapeutic. But it is unlikely that a bill will pass in the Senate without a provision allowing it to be included, he said. He said that NDNR was working with the Office of Civil Rights within the Department of Education on enforcing existing regulations but that there is need for a clearer, more comprehensive enforcement system. NDNR is currently working with the Director of the Center for Mental Health Services, the Director of the Office for Special Education, and other individuals from OSERS to develop programs to effectively address safety issues in schools. He then took questions from the committee.

Questions and Comments from the Committee

Ms. Lewis asked Mr. Decker to speak about the training protocols for the use of restraint and seclusion in schools. Mr. Decker said that there are few if any standards but many recommendations and reports. He noted that when principals adopt positive alternatives to restraint and seclusion, it results in an attitude shift throughout the school. He cautioned against believing that any meaningful progress had been made to combat restraint and seclusion, saying that nothing had changed since the NDNR report issued in 2009.

Ms. Lewis asked Mr. Decker if he believed the problem of restraint and seclusion would carry over to smaller home and community-based settings as more people left congregate facilities, and if so, how this could be addressed. Mr. Decker said that he believed restraint and seclusion would continue to be an issue as more people moved into the community because either staff would be pulled from institutions where they were using the practices or under-paid, untrained individuals would be hired to work in group homes. He warned against dismantling large facilities without developing high-quality community-based programs.

Mr. Grossman asked how real change could be brought about, questioning whether it was an issue of regulation, legislation, or enforcement. Mr. Decker said that true change could only be affected by a multi-level approach – strong regulation at the Federal/state level and enforcement by informed parents. He said that the IACC could play a role by keeping pressure on Federal agencies to create policy guidelines and exercise oversight. Ms. Blackwell asked if CMS could strengthen its role in regulating restraint and seclusion in home and community-based settings. Mr. Decker said that CMS should collaborate further with the Department of Education and SAMHSA to develop consistent policies across all settings.

Effective Implementation of School-Wide Positive Behavior Support: Reducing the Need for Seclusion and Restraint

Robert F. Putnam, Ph.D., BCBA-D, Senior Vice President, School Consultation, May Institute, Technical Assistance Center for Positive Behavior Interventions and Supports

Ms. Blackwell introduced Dr. Robert Putnam, Senior Vice President of the Technical Assistance Center for Positive Behavior Interventions and Supports. To date, the center has helped 14,000 schools in 44 states adopt a school-wide system of positive behavior supports (PBS). Dr. Putnam explained that School-wide Positive Behavior Support is used to establish the social culture and individual behavior supports necessary to maximize social and academic gains, while minimizing problem behavior for all students. Schools that implement school-wide PBS have been shown to improve academic scores because it helps increase class focus and skill development, he said.

Dr. Putnam explained that there is no specific PBS curriculum; instead his organization works with schools to select scientifically based interventions that will be most effective for the individual school. The system emphasizes four integrated elements: socially valued and measurable outcomes (such as integrating students with ASD into a general education classroom), empirically validated and practical measures to achieve these outcomes, systems that efficiently and effectively support implementation of these practices, and continuous collection and use of data for decision-making. PBS works to prevent problem behaviors from occurring in the first place and to develop positive intervention strategies if they do.

Dr. Putnam spoke about the importance of the school administrator's commitment to PBS and said that the guiding principle of PBS was to first invest in prevention. He mentioned that George Sugai, Co-Director of the center, had recently attended the White House meeting on bullying to discuss the use of PBS. Dr. Putnam said that when implemented faithfully, PBS can reduce the use of restraint and seclusion by preventing and effectively addressing problem behaviors.

He reiterated that restraint and seclusion is not a treatment approach and said that there is evidence it can actually increase the problem behavior it was used to deter. He then reviewed the research supporting PBS including data collected by his center showing reductions in problem behavior and improved academic outcomes in schools using PBS.¹³ Preliminary data also indicates that more intensive individual student behavior support is more effective when school-wide PBS is implemented.¹⁴ Evaluation data also suggests that PBS is associated with reduced use of restraint, increased effectiveness of comprehensive interventions, and improvement in the maintenance of behavior support gains.¹⁵ Dr. Putnam showed data documenting the reduction in restraint in a public middle school where his center had worked to implement PBS. The number of restraints fell from an average of about six times per month in the 2007 and 2008 school year to approximately two per month in 2009 to less than one in 2010.

Another study found that implementing PBS resulted in a 69 percent reduction in physical restraint and a 77 percent reduction in time spent in seclusion. He noted the need for more empirical studies on the prevention of seclusion and restraint. He also noted that a Massachusetts school district saved $2 million by implementing PBS, money that would have been spent sending students with severe behavioral issues to outside schools. The money was then reinvested in inclusive services within the school district.

He reviewed the preventative assessments that helped identify when, where, and why problem behaviors might occur. These assessments will include a review of records, interviews with parents and family members, direct observation, analysis of observational data, and an examination of past and present behavioral intervention plans. He noted that any behavioral intervention must be consistent with the student's right to be treated with dignity and should be preventative, constructive, and positive. Behavioral interventions should be documented to gauge their effectiveness and interventions should be adapted to fit the context, including any cultural considerations for the student and staff. He noted that staff members must be trained to implement positive behavioral support with the highest level of accuracy and proficiency.

Positive behavioral support has been shown to greatly reduce problem behaviors. The late Dr. Ted Carr conducted a meta-analysis of PBS interventions and found that they were effective for people with developmental disabilities who show aggression and self-injurious tendencies. PBS reduced problem behaviors, usually by 80 percent or more, and was most effective when a functional assessment was used to select appropriate interventions. Dr. Putnam said that the National Standards Project, conducted by the National Autism Center, reviewed more than 800 research papers and found that the vast majority of treatments that have been shown to be effective come from behavioral fields such as positive behavior support, applied behavior analysis, and behavioral psychology.

Dr. Putnam reviewed his recommendations for developing effective policies reducing seclusion and restraint. He said that the majority of problem behaviors that are used to justify restraint can be prevented with early identification and intervention. The use of restraint and seclusion is therefore the result of insufficient investment in prevention efforts, he said. He noted that restraint may be warranted as an emergency safety response, but that it should not be included in a behavior support plan without a formal functional behavioral assessment identifying why the problem behavior continues to occur. He summarized that restraint and seclusion should only be implemented as a safety measure and only within a comprehensive behavior support plan by highly trained personnel. Continuous collection of accurate data available publicly is also necessary.

Questions and Comments from the Committee

Ms. Blackwell asked Dr. Putnam to speak more about the cost-savings associated with the PBS model. Dr. Putnam explained that they had identified students in a large urban school district that were at risk of being placed in a more expensive and restrictive environment because of their challenging behavior. Using effective behavior support plans, the students were able to stay in an inclusive setting, saving the Massachusetts school district $2 million dollars or approximately 4 percent of its operating budget.¹⁶ He noted that in addition to the cost savings, individuals in inclusive settings have more positive outcomes than those placed in segregated environments.

Dr. Strickland asked if the results in the Massachusetts district had been replicated in the ten years since the study was published. Dr. Putnam said that they had seen similar results in other districts but had not collected formal data. Ms. Lewis cautioned that sometimes schools will not reinvest the savings made from keeping students in the school district rather that placing them out-of-district in more restrictive settings. Instead of building stronger inclusion services, some school districts will opt to simply keep the money as cost-savings. Ms. Lewis asked Dr. Putnam to explain his stance that restraint and seclusion should be included in a comprehensive behavior support plan, noting that there was no evidence base for the recommendation. Mr. Putnam said that restraint or "protective holds" were sometimes necessary to avoid injury. He said that seclusion was never used and the subcommittees discussed how restraint and seclusion should be understood as two distinct entities, with no support for the use of seclusion under any circumstances.

Ms. Lewis asked Dr. Putnam if he had advice for training for staff involved in with students who need high-level intervention supports. Dr. Putnam said it was important to have highly qualified people who have access to up-to-date progress monitoring information. He directed people to pbis.org and swis.org for more information. Mr. Grossman asked whether the May Institute, one of the nine organizations involved in the PBIS Technical Assistance Center, was collecting data to make a business case for the reduction of seclusion and restraint. Dr. Putnam said that they were currently looking at effective interventions in terms of economic efficiency for states. Ms. McKee noted that the PBS model was vastly different from Applied Behavior analysis (ABA)-based intervention programs and asked whether public schools had been receptive. Dr. Putnam said that most schools had been receptive but that it varied by state (much of his organization's work takes place in Massachusetts).

Group Discussion

The subcommittee then held a group discussion of the presentations particularly focused on recommendations that might be included in a letter to Secretary Sebelius. Ms. Blackwell identified several suggestions including that CMS should issue a final Children's Health Act regulation to replace the interim final regulation. One speaker had also suggested holding a White House conference on seclusion and restraint, similar to the conference on bullying. Another recommendation focused on developing the relationship between CMS and OSEP to identify Medicaid services provided in school-based settings. Ms. Blackwell said that Section 2402 of the Affordable Care Act might also provide an opportunity to discuss restraint and seclusion in home and community-based settings on a national scale.

Dr. Strickland suggested moving forward to implement regulations in the Children's Health Act. She also noted that following Medicaid-funded services in the schools could potentially be used as a way to target restraint and seclusion. Ms. Blackwell noted that CMS viewed the setting as incidental to the service being provided and Ms. Lewis explained that trying to use Medicaid funding in schools as an avenue was problematic because of issues with billing that would result in inconsistent regulation. Absent Federal legislation, Ms. Lewis suggested the possibility of developing model policies and tool kits incorporating the concepts of positive behavior support, as well as policies and procedures related to restraint and seclusion. Ms. Redwood asked if the IACC could express support for legislation and Dr. Daniels said that the committee could do so in the form of a statement. Ms. Redwood supported issuing a statement from the committee that could be used by the advocacy community to try to introduce a Senate companion bill to the Keeping All Students Safe Act. In order to do so, the committee would have to agree on the IEP issue, unless it decided to issue a broader statement of support that avoided specific details of the legislation. Dr. Rice suggested a two-pronged approach where an IACC statement would be supplemented with recommendations on coordinated-HHS policy. Ms. Redwood noted the utility of a white paper or policy position paper from the IACC that could be referenced by others. Dr. Rice then asked the committee to come to agreement on some of the guiding principles it wanted to emphasize.

Ms. Blackwell suggested communicating to the full committee that the Services and Safety subcommittees supported the Keeping all Students Safe Act with the recommendation that IEPs not contain plans for the use of seclusion and restraint. Dr. Strickland asked Dr. Daniels whether, as an advisory committee, the group should provide a balanced message, taking into consideration alternate viewpoints. Dr. Daniels said that the IACC had multiple options including drafting a statement that voiced general support, a more in-depth look at both sides of the issue, or a position piece coming out strongly in favor of one side. Ms. Redwood said that a letter that explored multiple sides of the argument without a concrete recommendation would not aid progress, but she noted that she was not bound by the restrictions that applied to the Federal members in the committee. Mr. Grossman agreed that any letter to the Secretary should offer definitive advice and supported the idea of a White House summit on restraint and seclusion. Ms. Singer agreed with the need to produce a consensus statement and requested that a representative from the Department of Education present the new restraint and seclusion guidelines that had been developed based on recently collected data. She noted that more funding is needed for professional development to train community- and school-based staff to implement guidelines. She said she believes that CMS needs to better enforce the regulations that are already in place and improve its reporting requirements.

Ms. Lewis offered the recommendation that concrete tools developed by SAMHSA and other HHS agencies be adapted and shared with the Department of Education. Mr. Grossman noted that the committee should emphasize the need for interagency partnership in a letter to the Secretary. Ms. Singer suggested the involvement of the Office of Civil Rights at the Department of Justice and Mr. Grossman recommended producing recommendations to the Secretary rather than a statement paper, because the Secretary has to respond to the former. Ms. Blackwell reminded the subcommittees that they would need approval from the full committee before anything could be done. Ms. Redwood said she also heard the need for consistent policies across CMS and the Department of Education. Ms. Strickland asked whether it would be good to develop sample recommendations or statements and Dr. Daniels advised the subcommittees to flesh out a draft document as soon as possible because of the IACC's scheduled September sunset date. The subcommittee appointed Ms. Lewis to develop the recommendations and Dr. Daniels suggested meeting again in June to talk about the draft document or documents. Ms. Lewis reviewed proposed topics for the recommendations: develop regulations under the Children's Health Act of 2000 and draft a statement supporting legislation that reduces the use of restraint and seclusion in the schools.

Dr. Rice offered the recommendation that agencies collaborate to focus on the issue across HHS, Department of Education, and possibly the Department of Justice. Ms. Lewis asked the committee to define what action steps they'd like to see come out of these collaborations. Ms. Blackwell asked if some of these issues could be addressed in section 2402(a), the provision in the Affordable Care Act that requires the Secretary to develop regulations to ensure that HCBS delivered by states outside of Medicaid are respectful of the individual and foster independence. Ms. Lewis said that it was unclear whether the cross-agency group working on the regulations would get down to such a granular level. She expressed concerns with attempting to address restraint and seclusion through the provision. Dr. Correa de Araujo commented that even if restraint and seclusion was addressed in section 2402, there is a similar problem with enforcement that is seen with other existing regulations.

Closing Comments and Adjournment

Ms. Redwood proposed framing the recommendations in a human rights context and asked Ms. Blackwell if CMS reporting could be expanded to include incidents that did not result in death. Ms. Blackwell said that this could only be done if revisions were made to the interim final regulation. Ms. Lewis explained that CMS data was not designed to look at individual data but instead provide a broader systemic view. The subcommittee co-chairs thanked everyone for their participation and the group talked about follow-up to draft the recommendations to Secretary Sebelius. The meeting was then adjourned.

Certification

The minutes of the May 19, 2011 Joint Meeting of the Subcommittee on Safety and the Services Subcommittee were approved by the Subcommittees on July 11, 2011.

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

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

References

¹ GAO Report – Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers (PDF – 485 KB)

² Summary of the Children's Health Act of 2000

³ Text of the Developmental Disabilities Assistance and Bill of Rights Act of 2000

⁴ Secretary Duncan's letter to Chief State School Officers advising them to review their state policies on restraint and seclusion

⁵ OSEP Technical Assistance Center on Positive Behavioral Interventions and Supports website

⁶ Text of H.R. 4247 – Keeping All Students Safe Act

⁷ Text of S. 2860 – Preventing Harmful Restraint and Seclusion in Schools Act

⁸ Text of H.R. 1381 – Keeping All Students Safe Act

⁹ GAO Report – Mental Health: Improper Restraint or Seclusion Use Places People at Risk (PDF – 426 KB)

¹⁰ 2010 SAMHSA Issue Brief #1 on Seclusion and Restraint: A National Strategy to Prevent Seclusion and Restraint in Behavioral Health Services (PDF – 527 KB)

2010 SAMHSA Issue Brief #2 on Seclusion and Restraint: Major Findings from SAMHSA's Alternatives to Restraint and Seclusion State Incentive Grants (SIG) Program (PDF – 455 KB)

2010 SAMHSA Issue Brief # 4 on Seclusion and Restraint Making the Business Case (PDF – 561 KB)

¹¹ State DD Agency Policies on the Use of Restrictive Procedures

¹² Positive Intervention Culture Information Notice (DOC – 293 KB)

¹³ Bradshaw, Mitchell & Leaf (2010): Examining the effects of Schoolwide Positive Behavioral Interventions and Supports on Student Outcomes

¹⁴ Medley, Little, & Akin-Little (2007): Comparing Individual Behavior Plans from schools with and without Schoolwide Positive Behavior Support: a preliminary study (PDF – 189 KB)

¹⁵ Feinberg, Simonsen & Putnam (2010)

¹⁶ Sugai, G., Horner, R. H., Dunlap, G. Hieneman, M., Lewis, T. J., Nelson, C. M., Scott, T., Liaupsin, C., Sailor, W., Turnbull, A. P., Turnbull, H. R., III, Wickham, D. Reuf, M., & Wilcox, B. (2000). Applying positive behavioral support and functional behavioral assessment in schools. Journal of Positive Behavioral Interventions, 2, 131-143:

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Sharon Lewis

Commissioner, Administration on Developmental Disabilities; Administration for Children and Families

Ms. Lewis joined the IACC as a Federal member in 2010 following her appointment as Commissioner of the Administration on Developmental Disabilities in March 2010. She serves on the Services Subcommittee and the Subcommittee for Planning the Strategic Plan Updating Process. She is also a co-chair of the Subcommittee on Safety. Well known as an effective advocate, Ms. Lewis has a proven track record in championing disability issues, while working for a better quality of life for all. She has worked in disability policy for more than 10 years at local, state, and national levels. She originally came to Washington, D.C. to serve as a Joseph P. Kennedy, Jr. Foundation Public Policy Fellow, working for Senator Chris Dodd's HELP subcommittee on Children and Families. In 2007, she joined Chairman George Miller's Education & Labor Committee staff as Senior Disability Policy Advisor, where she advised members of the Committee on disability concerns related to education, employment and healthcare. Ms. Lewis is the recipient of numerous awards, including the 2010 Distinguished Leadership in National Disability Policy Award and the Consortium for Citizens with Disabilities Chairman's Award. In Oregon, Ms. Lewis worked on public policy for the Oregon Developmental Disabilities Coalition and for the Arc. She served as the Co-Chair of the Oregon Family Action Coalition Team, founded DisabilityCompass.org and managed the Oregon Partners in Policymaking Program, working with individuals with disabilities and family members to participate in policy decisions at all levels. Ms. Lewis is a parent to three daughters, including one with disability. She is a native of Michigan and a graduate of Washington University in St. Louis.

Alexa Posny, Ph.D.

Assistant Secretary for Special Education and Rehabilitative Services

Dr. Posny was confirmed as assistant secretary for special education and rehabilitative services at the Department of Education by the U.S. Senate on Oct. 5, 2009. In this position, she plays a pivotal role in policy and management issues affecting special education and rehabilitative services. She directs, coordinates and recommends policy for programs designed to assist state and local education agencies with improving the achievement of students with disabilities ages birth through 21, as well as adults transitioning from secondary school to higher education, employment or both. She helps ensure equal access to services leading to such improvement for all children, particularly children with disabilities. Dr. Posny fosters educational improvement at the state and local levels, and overseas the distribution of financial assistance to local education agencies whose local revenues are affected by federal activities. She also serves as the principal adviser to the U.S. secretary of education on all matters related to special education for individuals in pre-K, elementary, secondary and postsecondary schools. Dr. Posny has previously served as the Commissioner of Education for the Kansas State Department of Education and the Director of the U.S. Department of Education's Office of Special Education Programs (OSEP). She has been recognized frequently for her educational leadership. In 2005, she received the Kansas High School Activities Association Governor's Award, an honor accorded to one individual in recognition of outstanding contributions in the field of secondary education in the state of Kansas. In 2004, she was named Administrator of the Year by the Kansas Association of Educational Office Professionals and, in 2001, she received the Outstanding Contributor Award for the state of Kansas from the Council for Exceptional Children. Dr. Posny earned her Ph.D. in educational administration from the University of Wisconsin at Madison, where she also minored in special education. She earned a master's degree in behavioral disabilities from the University of Wisconsin at Madison and a bachelor's degree in sociology and psychology from the University of Wisconsin at Stevens Point.

Ellen W. Blackwell, M.S.W.

Social Worker/Health Insurance Specialist, Centers for Medicare & Medicaid Services (CMS)

Ms. Blackwell is a Federal member of the IACC who also serves as the Co-Chair of the Services Subcommittee and a member of the Subcommittee for Planning the Annual Strategic Plan Updating Process. She has been a member of the IACC since 2007. Ms. Blackwell is a social worker specializing in geriatrics, and a Health Insurance Specialist at the Centers for Medicare & Medicaid Services (CMS). She joined the Federal service in 2001 as a Presidential Management Fellow. Working primarily on long-term care issues, Ms. Blackwell helps states improve the quality and consistency of community based services, and mental health services delivered through managed care delivery systems. Prior to joining CMS, Ms. Blackwell worked at The Horizon Foundation, a philanthropic organization that promotes local health and wellness. She interned as a graduate student at The Hilltop Institute, a health research center at the University of Maryland, Baltimore County, and the Howard County Maryland Office on Aging. Ms. Blackwell founded the Howard County chapter of the Autism Society in 1992, and has an adult son with autism spectrum disorder. She graduated from the University of Maryland - Baltimore, and the University of Wisconsin - Stout.

Larke N. Huang, Ph.D.

Senior Advisor on Children, Substance Abuse and Mental Health Services Administration (SAMHSA)

Dr. Huang has served as a Federal member of the IACC since 2007 and is a member of the Services Subcommittee. She is a Senior Advisor on Children and a licensed clinical-community psychologist who provides leadership on Federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration. She is also the agency lead on cultural competence and eliminating disparities. Dr. Huang has worked in the field of children's mental health for the past 25 years and has extensive experience as a community mental health provider and practitioner, researcher, university faculty and most recently in public policy for children's health and mental health services. She has worked with states and communities to build systems of care for children with serious emotional and behavioral disorders and their families, providing technical assistance on infrastructure and service delivery issues. Dr. Huang has developed programs for underserved, culturally and linguistically diverse youth, evaluated community-based programs, authored books and articles on children's mental health. Two more recent publications include: Children of Color: Psychological Interventions with Culturally Diverse Youth (2003) and Transforming Mental Health Care for Children and Their Families (2006). She received her Ph.D. in psychology from Yale University.

Charles R. Moseley, Ed.D.

Associate Executive Director of the National Association of State Directors of Developmental Disabilities Services

At NASDDDS, Dr. Moseley manages national projects and research, performs state and federal policy analysis, and provides technical assistance to states of Medicaid, self-determination, systems change, individual budgeting and a variety of other areas. Prior to joining the Association, Dr. Moseley was the Co-Director of the National Program Office on Self-Determination, a project of the Robert Wood Johnson Foundation at the University of New Hampshire Institute on Disability. Prior to that position, he was the Director of Vermont's Division of Developmental Services where he led the initiative to close the state's institution, transition all services to individualized community-based alternatives and restructure service delivery to incorporate principles of self-directed services. He holds a doctorate in mental retardation policy from Syracuse University.

Curtis L. Decker, J.D.

Executive Director of the National Disability Rights Network

Mr. Decker has been affiliated with the National Disability Rights Network (NDRN) (formerly the National Association of Protection and Advocacy Systems (NAPAS )) since its inception in 1982. As Executive Director of the nation's largest non-governmental enforcer of disability rights, he oversees all activities related to training and technical assistance, membership services, and legislative advocacy. Before founding NDRN with other P&A Directors, he served as Director of the Maryland P&A - the Maryland Disability Law Center. Mr. Decker also served as Director of the H.E.L.P. Resource Project for Abused and Neglected Children for four years, and was a VISTA worker prior to working as a senior attorney for Baltimore Legal Aid Bureau for five years. He is the immediate past chair of the Consortium for Citizens with Disabilities (CCD), a coalition of over 100 national disability groups, and serves on the boards of Friends of Research and Opera Vivente. In his career, he also served as a legislative consultant for numerous groups, including the American Association on Mental Retardation, the National Public Law Training Center, and the Maryland Academy of Physician's Assistants. He is a graduate of Hamilton College and Cornell Law School.

Robert F. Putnam Ph.D., BCBA-D

Senior Vice President of School Consultation at the May Institute

Dr. Putnam was on the faculty of the Harvard Medical School. Currently, he also serves as Director of Consultation at the National Autism Center (NAC) and was an Expert Panelist on the National Standards Project of the NAC. Dr. Putnam oversees one of eight national collaboration sites in conjunction with the University of Oregon and Connecticut comprising the National Technical Assistance Center for Positive Behavior Interventions and Supports funded by the Office of Special Education Programs, U.S. Department of Education. His research interests are in the use of function based interventions to improve prosocial skills as well as behavioral support strategies with individuals with autism spectrum disorder. Additionally, he has a strong interest in school-wide behavior support interventions. He has published extensively and presents regularly at national, regional and local conferences on these topics.

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• Government Accountability Office (GAO) Report: Seclusions and Restraints - Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers (PDF – 485 KB)
• 1999 GAO Report - Mental Health: Improper Restraint or Seclusion Use Places People at Risk (PDF – 416 KB)
• Draft Legislation: The Keeping All Students Safe Act 2011-2012
• IACC Slide Presentation November 8, 2010 – Kevin Ann Huckshorn (PDF – 842 KB)
• Letter from Secretary Duncan to Chief State School Officers
• Letter from Secretary Duncan to Chairman Christopher Dodd, Chairman George Miller and Representative Cathy McMorris Rodgers
• Department of Education's Center on Positive Behavioral Interventions and Supports
  
• Department of Education's Summary of State by State Seclusion and Restraint Policies (PDF – 1.3 MB)
• PBIS.org Fact Sheet on School-Wide Positive Behavioral Interventions and Supports
• PBIS.org Considerations for Seclusion and Restraint Use in School-wide Positive Behavior Supports
• The May Institute
• School Wide Information System (SWIS) Website
• National Autism Center (The May Institute's center for the promotion of evidence-based practice)
• Children's Health Act – Sections Relevant to Seclusion and Restraint (PDF – 49 KB)
• 2001 Medicaid Interim Final Rule on Seclusion and Restraint in Psychiatric Residential Treatment Facilities
• Clarification of Medicaid Interim Final Rule
• Letter to State Medicaid Directors on the Interim Final Rule (PDF – 166 KB)
• Substance Abuse and Mental Health Services Administration (SAMHSA) Curriculum: Roadmap to Seclusion and Restraint Free Mental Health Services
• 2010 SAMHSA Issue Brief #1 on Seclusion and Restraint: A National Strategy to Prevent Seclusion and Restraint in Behavioral Health Services (PDF – 515 KB)
• 2010 SAMHSA Issue Brief #2 on Seclusion and Restraint: Major Findings from SAMHSA's Alternatives to Restraint and Seclusion State Incentive Grants (SIG) Program (PDF – 444 KB)
• 2010 SAMHSA Issue Brief # 4 on Seclusion and Restraint Making the Business Case (PDF – 548 KB)
• SAMHSA Seclusion and Restraint Grant Program
• HHS Office of the Inspector General Report: Hospital Reporting of Deaths Related to Restraint and Seclusion(PDF – 488 KB)
• National Association of State Directors of Developmental Disabilities Services (NASDDDS): State Developmental Disability Agency Policies on the Use of Restrictive Procedures
• 2004 Vermont Behavior Support Guidelines: For Support Workers Paid with Developmental Services Funds (PDF – 370 KB)
• National Association of State Mental Health Program Directors (NASMHPD) Report: Reducing the Use of Seclusion and Restraint PART I: Findings, Strategies, and Recommendations (PDF – 11 MB)
• NASMHPD Report: Reducing the Use of Seclusion and Restraint PART II: Findings, Principles, and Recommendations for Special Needs Populations (PDF – 201 KB)
• 2007 National Disability Rights Network Fact Sheet on Centers for Medicare & Medicaid Services (CMS) Hospital Rules on Restraint and Seclusion (PDF – 36 KB)
• 2009 National Disability Rights Network Report: School is Not Supposed to Hurt (PDF – 846 KB)
• 2010 Progress Update - National Disability Rights Network Report: School is Not Supposed to Hurt (PDF – 2 MB)
• Council of Parent Attorneys and Advocates Report: Unsafe in the Schoolhouse: Abuse of Children with Disabilities (PDF – 495 KB)

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• Meeting Transcript (PDF - 408 KB)

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• IACC Meeting Slide Set (PDF – 10 MB)

Presentation	Presenter(s)
Seclusion and Restraint: An Office of Special Education and Rehabilitative Services (OSERS) Update (PDF – 1 MB)	Alexa Posny, Ph.D., Assistant Secretary for Special Education and Rehabilitation Services, U.S. Department of Education
Presentation Seclusion and Restraint in Medicaid Programs (PDF – 3 MB)	Presenter(s) Ellen Blackwell, M.S.W., Center for Medicaid & State Operations, Disabled & Elderly Health Programs Group (DEHPG), Centers for Medicare & Medicaid Services (CMS), Co-Chair, IACC Services Subcommittee
Presentation Alternatives to Seclusion and Restraint (PDF – 4 MB)	Presenter(s) Larke Huang, Ph.D., Senior Advisor on Children and Families, Administrator's Office of Policy Planning and Innovation, Substance Abuse and Mental Health Services Administration (SAMHSA), IACC Services Subcommittee Member
Presentation Seclusion and Restraint: A Brief Look at State Policies and Practices (PDF – 700 KB)	Presenter(s) Charles R. Moseley, Ed.D., Associate Executive Director, National Association of State Directors of Developmental Disabilities Services
Presentation Effective Implementation of School-Wide Positive Behavior Support: Reducing the Need for Seclusion and Restraint (PDF – 4 MB)	Presenter(s) Robert F. Putnam, Ph.D., BCBA-D, Senior Vice President, School Consultation, May Institute, Technical Assistance Center for Positive Behavior Interventions and Supports

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