Nancy Ward is a woman who lives in the United States and describes herself as having an intellectual disability. She is also very clear that this disability is a part of who she is, but it does not define her. To me she is Nancy. When I describe who she is to others, I tell them she is funny, reflective, creative, analytical and most of all a colleague. We first met when I asked her to join an advisory committee on a project to eliminate the use of restrictive practices in supports to individuals with disability. She initially refused, as I was at the time working for an organization teaching the use of coercive and restrictive practices, and after several conversations she agreed to participate on a provisional basis, eventually becoming a colleague in the process and added the role of friend as our relationship continued over time.
Nancy and other colleagues have taught me the importance of putting articles and presentations about concepts related to disabilities in the context of real relationships with real people. It is all too easy to write about coercion without seeing and feeling the effects of coercive interventions on the day to day lives of real people. When there is a discussion about the need for a behaviour support plan, the discussions almost never start with the person we are supporting, they are included, if at all, when the plan is complete and well-meaning professionals (myself included in the past) tell people what we are going to do to help them change their behaviour, and this is coercion.
The first article introducing the concept of Positive Behavior Support was entitled “Toward a Technology of “Non-Aversive” Behavioral Support. One of the important distinctions made in this article was the use of the term “behavior support” in place of the more commonly used phrases of “behavior management or behavior modification” which had been used to discuss addressing the maladaptive behavior of individuals with Autism Spectrum Disorders (ASD), Intellectual Disability (ID) and other diagnostic categories present in some people receiving specialized educational or residential services.
Instead of modifying or managing behavior, the idea presented by Rob Horner and other was that practitioners of positive behavior support would now seek to modify the environments in which behaviors occurred, focus on the quality of life experienced by the people being supported by this new behavioral approach, and understand that practitioners of Positive Behavior Support would do everything possible to move away from coercive interventions and embrace non-aversive behavior change methodologies.
Interpersonal violence (IPV) of people affected by disabilities, including physical and sexual abuse, as well as “medication manipulation, refusal to provide assistance with essential activities of daily living, denial of access to telephones and other communication devices, and destruction of adaptive equipment” is a significant issue. In 2013 alone, it is estimated that nearly 50% of people affected by disabilities experienced some form of IPV. Restraint and seclusion are the most extreme examples of the use of coercion to change behavior, and are experienced by people affected by disabilities as IPV. In a 26-year study of restraint associated deaths among people affected by disabilities written by Michael Nunno and others, the authors found that while the deaths were the result of individual interactions on a case-by-case basis, the deaths associated with the use of restraint were the result of a failure of organizational systems and processes. These failures are part of organizational cultures which reflect the predominant ethos of the larger culture in which human services are provided and received, and in which coercion is a normal part of the fabric of society.
To move away from coercion itself is reactive. Self-injurious actions and aggressive behaviors are the two most often cited reasons for the use of coercive behavior change methodologies, and in order to stop these behaviours interventions are utilized which use the public health model of primary, secondary, and tertiary interventions, which translate in behavioral approaches to prevention, de-escalation, and intervention. Despite decades of research, hundreds of articles and conference presentations on the subject of reductions in the use of coercive, restrictive practices, the data indicates that the use of such practices has not significantly decreased and in some cases has actually increased.
In Australia, the National Disability Insurance Scheme (NDIS) supports approximately 484,000 people with disabilities. In a 12-month period from July 2020 through June 2021, the use of restraints increased by 240% over the previous year.
In the England, the use of restraint increased from 22,000 reports in 2017 to 38,000 reports in 2019.
The United States does not have a centralized system for monitoring the use of restraint, seclusion and other coercive practices. Individual states such as Wisconsin, Texas, Illinois and Maryland have noted increases in the use of coercive practices similar to Australia and England.
Moving away from coercion is insufficient in and of itself to sustain prolonged culture change. In order to sustain any change efforts, there must be a positive reason for change, a moving towards instead of a moving away. Coercion is used in human service settings in response to behaviors that have been identified by those in authority as being problematic. In order to maintain safety for individuals who are being supported by the organization and the staff who provide the supports, organizations must move towards methodologies that are at least as effective at maintaining the safety of all stakeholders in the human service system, and hopefully more effective.
The pedagogy known as Invitational Education provides the framework for a behavior change model that invites rather than coerces behavior change. Known as Invitational Healing, the model recognizes the legitimate need for safety for all people and proposes a methodology specifically for use in mental health and general health hospitals, but which can be adapted to other human service settings as well.
The premise of Invitational Education is that education is the result of the interaction between two processes: Learning and Teaching. Learning is what learners do, and teaching is what teachers do. Invitational Healing, then, is the result of the interaction between two process: Recovery and Treatment. In addition, there are five concepts through which the interactions between those seeking to recover and those seeking to provide treatment are filtered. They are Respect, Trust, Optimism, Caring, and Intentionality. All these processes can be seen more clearly below:
The process of Invitational Healing, and of all human service interventions or treatments, is either supported or hindered by the culture of the organization. The power of the culture to support or hinder changes in the use of coercive interventions was recognized as an important factor in reducing and, where possible, eliminating the need for restraint and seclusion in human service setting. The impact of individual experiences of trauma must be a part of the organizational culture in order to support the move away from coercive and towards invitational practices. Organizations must embrace the idea that everything we do in our organization is informed and guided by an understanding of the neurobiological impact of trauma and the healing work of recovery and resilience.
This model is designed to invite people to change their behaviours in the context of healing relationships that are respectful and trustworthy, optimistic and empathic, and relationships where those of us who are paid to be in this relationship are fully mindful and intentional about our actions and interactions. We are supporting real people here, not clients or service users or consumers, just people looking to live an ordinary life.