Sunday, November 11, 2007

Exceptional Parent Magazine

Eliminating Restraint, Seclusion, and Aversives in Our Schools: A parent’s thoughts on why we’re stuck and how to move forward By Pat Amos Sep 30, 2007
- 6:10:50 AM
In the small hours of a recent night I found myself in a hospital emergency room waiting for my son’s release after treatment of a seizure. As I sat decompressing, I heard a group of hospital staff assemble in the corridor and then heard the word “restraint.” After a quarter-century as an advocate for people with disabilities, few words get me to my feet faster. I edged closer to the curtain to listen in.

The discussion turned on a hospital credentialing review that was to occur later that day, and I realized with growing satisfaction that it was a model of its kind. Staff reviewed the hospital’s policies that restricted restraint to dire emergencies, and the strict procedures to be followed in the event that such an emergency could not be prevented. Doctors were to be called, permissions obtained, oversight provided, brevity and safety stressed. They talked about the debriefing and extensive documentation that would be required of them should they ever participate in a restraint. It was clear from the hushed tones and careful recitals of these healthcare staff that they understood the gravity of the subject and their medical responsibility to “do no harm.”

How ironic, I thought, that my daylight hours are so often spent with parents whose children who have been harmed by casual and multiple restraint use in their schools, at the hands of the very adults entrusted with their care. It is no longer a secret that every day, across our country, special education students are grabbed and immobilized, tied and strapped to chairs, and held in basket holds and prone restraints that are known to cause asphyxia. Sometimes frightened children are dragged to seclusion rooms, a form of restraint involving forced isolation. Despite the fact that they are known to cause injury, intense psychological trauma, and even death, these extreme methods are justified as education, discipline, or behavior therapy. Under these reassuring guises they tend to be used repeatedly and with impunity. Sometimes they are written into a child’s Behavior Intervention Plan (BIP) or Individualized Education Plan (IEP), and sometimes they fly under the radar, with parents uninformed.

Either way, the easy and reckless use of restraint in our schools stands in stark contrast to the cautious avoidance with which restraint use is now expected to be approached in hospital, rehabilitation, nursing care, mental health, and related medical settings. What many school systems still see as a viable treatment or plan, health care systems increasingly repudiate as a failure of treatment and a failure to plan. How did our nation’s special education system get to a place where school teachers and classroom aides rush in where medical professionals fear to tread? And what is our exit strategy?

The short answer to why children with disabilities remain at unnecessary risk in their schools is a nationwide failure of leadership. While our education system refuses to face the problem, hospitals, nursing homes, and mental health treatment settings have recognized and acted to end the serious risks associated with the use of restraint and seclusion. Federal and state authorities and the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) now impose significant restrictions on its use and require specialized staff training, rigorous review of each usage, and detailed data reporting. Advocates and their Congressional allies achieved passage of the Children’s Health Act of 2000, which offers significant protections to children in mental health settings. The President’s New Freedom Commission on Mental Health (2003) set forth a vision for safe, humane services. And the Centers for Medicare and Medicaid Services (CMS) have taken a leadership role in shedding light on the dangers of restraint and seclusion, enforcing higher standards and accountability across the programs they fund.

In contrast, many state education agencies continue to operate without regulating, or with regulations that specifically allow, the use of non-emergency restraint, seclusion, and even aversive “punishers” (which have no justification even as emergency responses) on children with disabilities. In fact, the New York State Department of Vocational and Educational Services recently widened the array of aversives it would permit for use on school children with disabilities. This patchwork of dangerous and inequitable state-level special education regulations, although neither evidence-based nor in sync with the protections children receive in other settings, is quietly accepted by the federal government. This apathy must end. In an education system dedicated to producing lifelong learners, it is time for our leaders to learn new lessons from the successful reduction and elimination of restraint and seclusion in other service systems.

These lessons are turning out to be encouragingly clear and simple. The National Technical Assistance Center (NTAC), National Association of State Mental Health Program Directors, has analyzed the Core Strategies leading to successful restraint/seclusion reduction and elimination in mental health settings and compiled them into a 6-point lesson plan. With a little curriculum modification, I believe we can make this lesson accessible to the education system:

1. Leadership Toward Organizational Change. This first strategy identified by NTAC requires the organizational leader or CEO – for schools read “principal” – to define and articulate “a vision, values and philosophy” resulting in an action plan based on “continuous quality improvement.” That leader must then be present and involved in “witnessing” any time a restraint occurs. “Witnessing” is a surprisingly simple and powerful concept that forces a problem into awareness and demands personal accountability. Imagine how witnessing could change the culture of a school: no hiding restraint and its aftermath behind closed doors, no looking the other way, no deniability. To lead with integrity, those in power would have to become active learners engaged in discovering what happened, why it happened, and how to prevent it from happening again.

2. Use of Data to Inform Practice. Now that evidence-based practices have become part of the common language of the education system, this strategy translates easily. Schools need to follow the example of health care facilities and pay rigorous attention to gathering data on restraint use: by classroom, school, district, characteristics of the individual and situation, and other informative variables. An all-too-common practice in special education has been to bury restraint usage in students’ IEPs or BIPs, reporting data only on “emergency” restraint – an emergency being, for practical purposes, any restraint use that has not been given prior permission in a student’s plan. However, a “planned emergency” is not only an oxymoron but an incentive to write restraint into more students’ plans. State education systems will undoubtedly try other ingenious strategies to avoid facing the data – for example, Pennsylvania’s State Board of Education recently proposed new regulations that would exempt restraints of no more than 30 continuous seconds from being counted as restraints, no matter how many were performed in a row or how much aggregate time a student spent in this way. This is where national-level leadership, from the U.S. Department of Education to Congress, has to get tough. Continuous quality improvement can only build on a foundation of hard data.

3. Workforce Development. NTAC calls for the development of “trauma informed systems of care,” a different and broader focus than the mere promotion of physical safety during restraint. Trauma-informed care promotes responsibility for the emotional wellbeing of children. It is based on research from psychology, child development, and neuroscience that shows that children exposed to high stress situations tend to develop challenging behaviors which in turn expose them to further stress. The take-home message—or take-to-school message—is that using restraint, seclusion or other aversives to change the behavior of students with disabilities is the type of stressor that can lead to the development of attentional, motivational, impulse-control, and mental health problems. These problems, in turn, can lead to behavior that is mistakenly blamed on the disability and subjected to further trauma-inducing responses, such as more restraint. An understanding of this vicious cycle and how to stop it must become part of every educator’s skill set.

4. Use of Seclusion/Restraint Prevention Tools. This strategy from mental health settings is paralleled by the requirement under the Individuals with Disabilities Education Improvement Act (IDEIA) that IEP teams approach a child through “positive behavior interventions and strategies,” which in turn should trigger a Functional Behavioral Assessment (FBA) when a Behavior Intervention Plan is needed. What the special education system lacks is comprehensive implementation of those tools. For example, California’s Protection and Advocacy, Inc. (PAI) recently gave that state’s schools an “F” for failure to confront widespread abuses of restraint and seclusion. In the cases PAI investigated, schools failed to utilize the significant preventative tools at their disposal: there were no proactive plans to address known problems, and no meetings were convened after a restraint to discuss changes in the IEP or to arrange for an FBA. NTAC notes that “This strategy relies heavily on the concept of individualized treatment.” Similarly, schools fail their students when they fail to individualize.

5. Consumer Roles in Inpatient Settings. Successful strategies in mental health settings involve “the full and formal inclusion of consumers, children, families and external advocates in various roles and at all levels in the organization to assist in the reduction of seclusion and restraint.” In our schools, this would translate into greatly increased parental involvement, welcoming parents and advocates as resources who have valuable insights and proactive strategies to impart on behalf of individual children. It would also translate into welcoming parents and students to participate in debriefing interviews when problems occur, and encouraging their participation in the development of relevant school and district policies. Operating with this level of openness and transparency has been a frightening prospect for many schools, yet the experiences of the mental health system demonstrate the importance of meaningful inclusion of all stakeholders in achieving successful systems change.

6. Debriefing Techniques. This final Core Strategy insists that every use of restraint or seclusion is meaningful and must be analyzed to avoid repetition. No such event can be accepted as unimportant, unavoidable, or part of someone’s routine plan. In our schools, the student and student’s family must be central to this process. If educators truly believe in the value of critical thinking, they need to put this skill into action instead of unthinkingly making the same dangerous responses over and over.

None of these six Core Strategies involve rocket science, but seeing them implemented will involve leadership at the highest levels of our federal Department of Education and among members of Congress. The mental health community made great strides in restraint and seclusion prevention, despite disbelief and opposition, when visionary national leaders connected with an organized and supportive grassroots constituency. Similarly, parents, families, and self-advocates must insist that our schools stop lurching from tragedy to tragedy and be guided by strong national policies that are proven effective in preventing these dangerous, inhumane practices. Each time the use of restraint, seclusion or other aversives comes to light we must loudly, publicly, and relentlessly “witness”— and insist that our leaders witness with us.

­­­­­­­­­­­NTAC’s “Six Core Strategies to Reduce the Use of Seclusion and Restraint” and related planning tools can be accessed through the web site of The National Association of State Mental Health Program Directors:

Pat Amos, M.A., has been an advocate for people with disabilities for over 25 years. She is a founder of Autism Support and Advocacy in Pennsylvania (ASAP) and of The Family Alliance to Stop Abuse and Neglect, past president of the Greater Philadelphia Autism Society, and past president of the Autism National Committee. Currently she is a member of the Board of Directors of TASH, an international organization that promotes equity, opportunity, and inclusion for all individuals with disabilities. Pat's family includes three young adults with significant sensorimotor differences.