In the past several years, there has been an important movement to reduce the utilization of restraint for individuals with developmental disabilities. Legislatures, local and national, are taking on the task of shaping the way that our culture supports people who, up until now, have been often treated in a punitive manner rather than truly supportive in a therapeutic way. Schools and systems of care struggle to identify strategies that offer more positive outcomes to all individuals, even those with challenging behaviors. This article represents the thoughts and recommendations of one parent who has lived with the damage done by restraint to his son. The recommendations are intended to speak to administrators, schools, and caregivers. The intent is not to assign blame, but rather to reflect on our experiences and share some strategies that have worked for us. Although much of what is recommended may not be new, the hope is that this article might provide a fresh way to understand some of the factors that contribute to the use of restraint, in addition to providing some suggestions to proactively address those factors.
We are a family of three. I am a music teacher in private schools. My wife, Maren, is a retired public school teacher, who began her career as a special needs teacher. When our son, Andre, was born she switched to general education, and ultimately spent many years as a third grade teacher. Throughout her career she remained committed to students with special needs and partnered regularly with special educators to facilitate an inclusive educational experience for all. Andre was born with special needs. When he reached school age, Maren's special needs background informed our interactions with those involved in his education. When Andre's behavior at home and at school became challenging and aggressive I began to play a more active role as a concerned parent and advocate for my son. I became involved with various advocacy groups as I tried to learn about the educational system and ultimately the adult system of care that supports people with disabilities.
Andre is now a 26-year-old nonverbal young man with autism, intellectual disability (ID), a severe anxiety disorder, and some physical limitations due to low muscle tone. His anxiety sometimes manifests in aggression, and sometimes in self-injurious behavior (head banging). When his challenging behavior made it impossible for him to remain at home safely, Andre was admitted to a children's psychiatric hospital at the age of 13. To protect his head from injuries including concussions, Andre was fitted with a martial arts helmet to wear when he engaged in head banging. He hated wearing this helmet, and frequently would remove it when upset.
In 2005, between July 28 and October 3, Andre was put into a prone restraint 30 times in a new placement for him that provided residential and educational services. Twenty-nine of these restraints occurred in school. In each case, the restraint was triggered by aggressive acts from Andre, rooted in his frustration with his program. Our family was not notified of the details of the incidents, nor were we aware of the frequency and duration of the restraints. We had never agreed to such a program of restraints and were alarmed and horrified when we realized the scope of what was occurring to him with regularity. Andre did not have a history of repeated prone restraints before the 2005 placement, and he has only been restrained a few times in more than 10 years since leaving that placement. During that 3-month period in 2005, Andre suffered repeated bruising and abrasions. He frequently was observed crying. The situation deteriorated to the point that we chose to remove him from the placement. We were only able to gain insight into the details of Andre's schooldays full of restraint by requesting all records through a lawyer. He was subsequently re-admitted to the psychiatric children's hospital. The psychological impact of the trauma became evident when Andre, within 1 week of his discharge from the residential placement, intentionally smashed his face on a table and needed a trip to the emergency room. From that day forward, Andre insisted on wearing the martial arts helmet every waking minute of every day for the next 6 years. As we think about that awful period in Andre's life as well as other isolated incidents, careful analysis of the facts and circumstances surrounding each incident has convinced us that the decision to restrain him had caused each incident to escalate in intensity, rather than to de-escalate. Although the intent of each restraint was to maintain safety, the restraints had actually caused the environment to become more dangerous. It also became clear to us that much of Andre's frustrations with his situation stemmed from a very prescriptive and rigid program that did not honor his preferences and interests, and instead tried to change what was perceived to be maladaptive behavior. When Andre reacted negatively to this program in the only way that he knew, which was to throw a cup or sweep his lunch off a table, then events escalated quickly into prone restraints.
We began to have more success in reducing the frequency of restraints in subsequent settings when we were able to have meaningful conversations about Andre's program with his clinical team. We have utilized this model in a variety of placements as Andre has transitioned from hospitalization to a group home in the child world, to residential placements in the adult population. Gradually, with work from the entire clinical team, which included our family, he gained enough trust in those around him to feel safe without the helmet. To this day, Andre remains fragile. He can be explosive, and because his language is limited, it is often challenging to identify the root of his frustration when he lashes out or becomes self-abusive.
Recommendations for Professionals From a Parent's Perspective
I will never forget the feelings of utter helplessness as we watched Andre deteriorate over the course of 3 months, not knowing that he was being pinned to the floor with such frequency. In October of 2005, our family made the decision to remove him from the placement where he had been repeatedly placed in prone restraints. In addition to his visible bruises, he had lost trust in all adults outside his immediate family, especially men. In the years since Andre left this placement, we have been devoted to rebuilding his sense of safety as we have worked with his providers to find ways to prevent such restraints from ever happening again. We have come up with some recommendations that may prove useful for professionals who are involved in supporting people with disabilities. My recommendations are consistent with the best practices (e.g., see Office of Special Education Programs [OSEP] Technical Assistance Center on Positive Behavioral Interventions and Supports, 2017; Simonsen, Sugai, Freeman, Kern, & Hampton, 2014) that have been identified in regard to family-school collaboration and positive behavior supports, and may seem like common sense to many. But, the truth is, each recommendation stems from real life experiences with my son. Although it may be tempting to think that these were isolated instances that would never occur again, individuals with disabilities are still being restrained all over the country (i.e., Scheuermann, Ryan, Peterson, & Billingsley, 2013; Westling, Trader, Smith, & Marshall, 2010). Andre remains at risk for physical interventions and has had isolated restraints since his school days. Our family needs to remain vigilant and constantly re-examine factors that can impact his quality of life and in doing so reduce the risk of volatile outbursts. Our hope is that Andre's experience may serve as a mirror of sorts for our system of support, to reflect some of the many facets of care that need attention in order to provide a positive environment for growth for some of our most vulnerable citizens. It should be stressed that our family's view is that the needs, wishes, and hopes of individuals with disabilities should be recognized and honored at all times. Our opinions as family members should not take the place of the opinions of those individuals. The intent of this article is to help to give voice to those who have difficulty advocating for themselves due to communication deficits or challenging behavior. Ideally, our family's recommendations would be in line with Andre's, and we have attempted to accomplish that to the best of our ability. If even one of these recommendations resonates with a professional, who is moved to examine an internal policy or procedure, then this article will have been a worthwhile endeavor. The recommendations are divided into three categories: (1) Proactive strategies for reducing restraints; (2) Strategies during crisis to de-escalate situations; and (3) Strategies after crisis.
1. Proactive Strategies for Reducing Restraints
Implement positive behavior support from the outset
Preventing the overuse of physical restraints is partially contingent on professionals having alternative strategies to address behavioral challenges. For at least three decades there has been widespread acknowledgement that positive behavior supports which are aligned with function-based interventions provide a more effective means to address challenging behaviors compared to reactive, consequence-oriented approaches such as restraints. Had behavior intervention plans, based on information gathered from a functional behavioral assessment of challenging behaviors, been implemented from the outset to reduce the behaviors that were causing problems for my son and improve socially acceptable alternative behaviors associated with success in school (e.g., see Walker, Chung, & Bonnet, 2017), it is possible that the use of restraints may never have escalated to such an extreme level. The purpose of this article is not to look back and consider all of the potential positive behavioral support strategies that might have been effective had they been implemented. Rather, this article was written to tell the story of how restraints were overused in the case of my son, and to offer advice to those who may either be overusing restraints in their own programs or may find themselves heading down that path. My first piece of advice is for all members of a planning team to make sure positive behavioral supports are in place and implemented correctly. In difficult cases, planning teams may need to consult with a qualified behavioral consultant who has the advanced training and experience necessary to analyze the situation and facilitate the team in identifying and implementing intensive, positive behavioral supports.
Make families part of the support team
Often parents and siblings would like to become active participants in the lives of their family member with a disability, but feel inadequate and unsure of how to contribute to a dialogue about their family member in a productive manner (Tucker & Schwartz, 2013; Tveit, 2009). Professionals can empower families by inviting them into sensitive conversations with clinicians about their loved ones. Really, this is just an extension of the fact that individuals with developmental disabilities need to be recognized as essential members of the support team. Parents and siblings can help to support the ability of people with disabilities to advocate. Families possess a wealth of knowledge about their loved ones that can be of tremendous value to clinicians as they treat the people that they serve. Families should be welcomed to the clinical team without needing to wait for a restraint or significant incident. However, when significant issues do arise, the family can play an important role in achieving a positive outcome. The notion that an incident can be adequately debriefed without input from individuals and their families excludes the voice of the individual from the discussion and ignores the benefit that can result from these sensitive interactions. For Andre, many changes were made in his program in 2005 without meaningful discussion with us, and Andre's dissatisfaction with his circumstances turned to anger and aggression.
In order to fully participate in decisions made by the clinical team, we have learned that we need to be firm in our resolve as family members to obtain as much information as possible about the details of Andre's life, including significant incidents. It is so helpful when families and professionals can come to the table with an open mind and a sincere desire to support the person with a disability. Each party has important contributions to make to conversations about program planning. Neither party should be quick to dismiss the other's contributions. Our family would love to see the removal of all barriers to family engagement in every aspect of the lives of their loved ones.
Provide individualized support
People deserve to be treated as individuals. The disability world is replete with theories and interventions that can apply to individuals with disabilities (Wong et al., 2013). It is dangerous to insist that any one intervention should be universally applied to all people supported by a school or agency. Doing so ignores the diversity within the disability community and within mankind. Agencies or educational entities that specialize in one ideology should not end up as the only available placement for an individual.
When Andre was ready to be discharged from the hospital, our family was notified that there was only one available placement for him in the state. Because of his fragile nature, due to his disabilities, our family was determined to keep him nearby, so we accepted that placement. Before long, a therapy that was intended to teach the concept of relaxation to him had the exact opposite result, and instead annoyed him to the point where he became aggressive. To complicate matters even further, the relaxation therapy was also a technique that was used by the agency to de-escalate incidents. The result for Andre was a program that used a therapy that annoyed him as a de-escalation tool for when he was angry. Needless to say it did not work. The required therapies were not therapeutic at all to Andre. They infuriated him. He did not understand them or feel that they had any meaning for him, and the therapies even caused incidents to escalate, resulting in traumatic restraints. Our family feels that the capacity of the system needs to expand to provide quality, individualized care in order to make best practice available to everyone. Individuals and their families should never have just one option or program available to them.
Whenever individuals move to a new school or agency, their individualized education programs (IEPs) or individualized support plans (ISPs) must precede them to the new placements (IDEA, 2004). Although this seems to be obvious, people with disabilities move from school to school or agency to agency, and occasionally the plan to support that individual does not arrive in a timely manner. In Andre's case, the agency that our family had trusted to care for him claimed that they never received the IEP that had been developed for him in the hospital in collaboration with our family. The result was that Andre began in a new setting without the benefit of an individualized support plan that was informed by his history. Instead, the clinical team in the new placement treated him with very prescriptive therapies that Andre did not embrace, as they ignored our input and the knowledge contained in his IEP. The result was disastrous. An individual's IEP and other support plans are documents that must provide the frameworks for establishing new programs after any move.
Create meaningful experiences
People need to have meaning in their lives. Whether in school or adult life, each of us requires instruction or activities that we can understand and that enrich our lives. People with disabilities are no different. The need for meaningful activities does not end at age 21. Activities that are meaningful for an individual have great potential to promote maximum effort and growth. Conversely, activities perceived to be meaningless for someone like Andre will likely result in very little effort or attention on his part. When his perception is that his world is devoid of meaning, the potential for frustration increases dramatically. It is easy to see how this lack of meaning can have dire consequences. Andre is totally dependent on others for personal care, transportation, and a program. When his program lacks meaning, or transportation is a barrier to meaningful activities, frustration understandably begins to build. Over time, that frustration can turn to anger, which can lead to aggression or self-injurious behavior. An example of this might be to note that Andre enjoys being in the community. He loves to be engaged in activities that take him out into the real world. He enjoys interacting with all kinds of people. School activities that required that Andre stay in one place to work on a task often caused him to become anxious. Without the ability to effectively communicate his frustration with his daily routine, Andre occasionally became aggressive or self-injurious. This behavior was interpreted as dangerous and often resulted in the decision to restrain him. Our family is convinced that Andre could have avoided some of these restraints if his program was more meaningful to him. He does best when his program builds on his strengths and interests.
Improve communication skills
In November of 2014, Andre was a passenger in a van across a large bridge when he became frustrated with his ability to accurately communicate his wish to attend a baking class to the staff person who was his driver. Because Andre cannot talk and has a limited communication system, his wishes can sometimes be misinterpreted despite the best of intentions by those who support him. It seemed like that could be what happened in this instance. He became aggressive toward the driver who stopped the vehicle on the bridge. Police were alerted that there was a problem on the bridge and soon five squad cars from various jurisdictions were dispatched to the scene. Again, Andre was unable to effectively communicate with the police, who, in spite of the protests of Andre's caregiver, proceeded to restrain him in the van and place him in handcuffs. They then transported him to the local hospital where the emergency room staff administered powerful drugs to sedate him.
This story illustrates the fact that Andre's lack of an effective language impacts every aspect of his life every single day. How different would this story have been if Andre had been able to tell his staff person that he wanted to attend the baking class, or if he had been able to explain to the police that he had a disability and need not be treated as one would treat a criminal? He is one of many non-verbal people who have minimal resources to aid in communication. His lack of an ability to effectively communicate leaves him particularly vulnerable and frequently frustrated with his world. In Andre's case, we believe that his aggressive outbursts and self-abusive behaviors are rooted in his extreme frustration with his inability to adequately communicate with others. As he transitioned into the adult world, our family was confronted with the reality that, for adult individuals with limited ability to communicate like Andre, effective speech therapy ended at age 21. We believe that there is great potential in working to improve speech services for people of all ages who struggle to communicate effectively. With the impressive advances in the iPad and other technology, there are many new opportunities to expand the array of resources available to enhance an individual's capacity to communicate (Boyd, Hart Barnett, & More, 2015). Our family recommends that resources for speech technology and therapy should be available to individuals who need them throughout their lifetime.
Be aware that people with disabilities may have a history of trauma
Past and present trauma is more common among people with developmental disabilities (Conners-Burrow et al., 2013) than many professionals realize. Acknowledging trauma is a necessary first step toward building empathy with those who have been subjected to abuse or neglect directly or indirectly. Relationships are so important for all of us, but imagine how important relationships are for people who are dependent on others for meals, personal care, transportation, money, safety, and countless other things that those of us who do not have a disability take for granted. Let's imagine that an individual develops a trusting relationship with one staff person or several staff people. These are the people that the individual feels are on his side. When a restraint happens, those relationships are severely damaged and sometimes destroyed (National Association of State Mental Health Program Directors [NASMHPD], 2011). Suddenly the staff person who seemed like a trusted friend is pinning the individual to the floor. How is it possible after a restraint to have the same level of trust for those who participated in the restraint? In Andre's case, he experienced 30 prone restraints in a 2-month period. I would argue that every one of those restraints was traumatic. Indeed, one day Andre was in prone restraints for about two hours. Is it any surprise that his relationships with his staff deteriorated? Why would he trust them? For Andre, his history of restraint has had a lasting impact on his ability to develop trust with caregivers. His decision to wear a helmet all day every day for 6 years speaks volumes as to how unsafe he felt in his environment. The fact that it took 6 years is a testament to how long the effects of trauma can last. He seemed to be telling us with his choice that he had decided to wear a helmet in order to protect himself from harm. Our family believes that clinical teams should analyze relationships and placements frequently to avoid situations that set up potential conflict. Supporting people with comfort rather than control creates a nurturing dynamic that fosters healthy relationships between vulnerable people and their caregivers.
Pay attention to transportation
People spend a great deal of time in vehicles, moving from place to place. Things happen in transit, just as they do in other environments, but incidents in vehicles may not come to the attention of the clinical team with the same level of detail as an event that occurs in the classroom, workplace, or residence. Events that occur on the bus on the way to school, or in a vehicle on the way to work, can have a profound impact on the person's entire day. It is important to collect and monitor data that reflects the transportation experience. Andre had many incidents where he was restrained in vehicles or where he became aggressive in vehicles. Many of these incidents resulted in bruises and abrasions. It required a careful examination of all of the details of Andre's transportation needs including spatial considerations and safety concerns before accommodations were made that made a difference. Supporting people with comfort rather than control creates a nurturing dynamic that fosters healthy relationships between vulnerable people and their caregivers. As Trader et al. (2017) pointed out, there is no evidence base for the therapeutic use of restraint.
Give people adequate space
When Andre is upset and unable to adequately communicate his feelings to those around him, he lashes out at others or will bang his head on a hard surface. Sometimes the trigger for him and others like him is the fact that, at that moment in time, he needs to have more space around him. He needs a safe space where he can get himself together on his own terms in order to appropriately join the group when he is ready to do so. For Andre at home, that space is his bedroom. He is most successful when he has the option of calming down in his bedroom when he becomes upset. Yet it is very common to find classrooms and residences that require many people to function harmoniously in a small space. For people without challenging behaviors this may be a workable situation. But for individuals who could act aggressively, the space limitations are creating conditions in the environment that escalate rather than de-escalate (Shukla-Mehta & Albin, 2003). Is it any wonder that a behavior that might be easily managed in a large space suddenly becomes an emergency in a small space?
Andre has had difficulty in vehicles and confined spaces with lots of people. When he is allowed more space in a vehicle, and when he has freedom to move away from crowds, he feels at ease and is able to enjoy gatherings without stress. When an individual like Andre becomes aggressive and begins to lash out in a small space, there is nowhere to move others in order to maintain safety. There is no semblance of a safe space for anyone, and the pressure of maintaining safety in a tight space can push an incident toward a physical intervention.
Our family recommends that progress could be made towards eliminating restraints if professionals were to re-think the spaces where people learn, work, live, and play with a focus on ensuring that people who need it are allowed enough space to feel comfortable and safe.
2. Strategies During a Crisis to De-Escalate Situation
Take a careful look at the concept of imminent risk. It is important to closely examine the factors that impact safety (Alliance to Prevent Restraint, Aversive Interventions, and Seclusion [APRAIS], 2008; Huckshorn, 2004). Safety management requires the use of good decisions that balance the needs of all people in the environment. This discussion is not intended to call into question a carefully measured intervention as a response to an emergency. Rather, our family is hoping to encourage a critical and realistic analysis of the potential for harm before a decision is made to put hands on an individual. Andre had instances in one setting where he was put into prone restraints for throwing his lunch, or clearing a task off a table. Is throwing a lunch so dangerous that it warrants an intervention as dangerous as a prone restraint? If Andre clears a task off a table, is a restraint an appropriate measure to maintain safety? Immediately putting him in a restraint as a result of an outburst is as impulsive as the outburst itself. A more realistic assessment of imminent risk might have led to a very different outcome in Andre's classroom. It is important to be mindful of the safety risks that are introduced into a situation when physical interventions occur (APRAIS, 2008). When people are repeatedly restrained or secluded, the environment can easily become one where takedowns are routine and the culture is one of fear rather than support. This does not benefit anyone in the room. Indeed, the long-term consequences of the physical interventions could potentially drive psychological wedges between the teachers or staff and the people that they support, possibly provoking future outbursts. Andre's restraint experiences in his classroom led to a rapid deterioration of his relationships with his caregivers. Would any of us want to live, work, or learn in such an environment? The intervention may be riskier than the initial behavior.
Often, alterations to an environment can remove many risk factors. Doing so removes risk from the environment before the fact, and an event that might have been perceived as an emergency can now be handled more calmly and with less risk to anyone. Andre, when upset, sometimes expresses his frustration by banging his head on the floor. One ingenious accommodation that has helped him in his adult home was the installation of a soft surface on the floor. Although it is still frightening when he is engaged in head banging, the environment has been made much safer due to the installation of the floor.
Take your time in a crisis
It is important to allow Andre time to self-regulate when he is upset. Although the first inclination might be to intervene when he becomes upset, there can be great merit in remaining patient. Nothing ups the ante in a crisis like putting a time limit on a resolution. Unless an environment has become dangerous, it is usually a good idea to just slow down. When Andre is upset, the most effective approach with him is to remain calm. If those around him become upset as well, then the situation is likely to become more unstable. The best approach is to reflect for a minute about possible de-escalation strategies. Often, caretakers can find ways to take some pressure off a situation by buying a little time from the next activity or even skipping the next activity altogether. Flexibility in the schedule promotes a more relaxed demeanor from everyone in a crisis and affords a more natural environment for recovery.
3. Strategies After Crisis
Debriefing of significant incidents is a critical tool for families (NASMHPD, 2011). The debriefing process should incorporate the unique insight that families have into the challenging behavior of their loved ones. For instance, after examining documentation connected to the prone restraints in 2005, our family learned that Andre had many restraints that were a result of his resistance to certain behavioral therapies. Other restraints arose from an insistence that Andre maintain eye contact with his staff. For a person with autism, eye contact can be difficult. When he objected in the form of an aggression, the stage was set for physical intervention.
Our family was not included in the debriefing process during the months when Andre experienced so many restraints. In fact, we only became aware that the restraints were occurring when we began to notice bruises and abrasions on his body. We feel like our family was not afforded the opportunity to stop the cycle of restraints in a timely manner. Our experience since he was removed from that setting has been remarkably different. Because our family had experience handling Andre's challenging behaviors ourselves when he lived at home, along with subsequent team work with clinicians in the children's psychiatric hospital and other settings, we have been able to provide some context to help his team to better support him in difficult moments without resorting to restraint.
Families should have access to a written account of the incident in question before meeting or conferring. Ideally, the family or advocate should have an opportunity to speak directly to the lead person involved with the restraint, just as an administrator would have an opportunity for a discussion with the lead person (NASMHPD, 2011). Our family has been most successful in obtaining a clear picture of an incident when we were able to have a conversation with people who were there. This needs to happen in a timely fashion, within 24 hours of the incident. This does not preclude schools or agencies from having an internal debriefing after an incident. It simply provides a more complete picture of the event to all involved, so that all voices are heard when program changes are decided upon following a significant behavioral event (Peterson, 2010). Although it may be true that many teachers, staff, and administrators may advocate for an individual, families can bring a different perspective and a deeper level of personal commitment to the table. The debriefing process should inform and guide future practice. Every restraint should move the clinical team to examine the individual's program (Huckshorn, 2004; LeBel, Nunno, Mohr, & O'Halloran, 2012; Peterson, 2010). Our family believes that the debriefing process for people with disabilities should meaningfully engage families and guardians with the clinical team to provide a clarity and context to significant incidents.
Collect and use restraint data to inform practice
Schools and agencies, along with state systems of care, must do a better job collecting and monitoring restraint and seclusion data (LeBel et al., 2012). Nothing is more powerful in advancing an argument than referencing compelling data that supports your position. Families and advocates for people with disabilities have struggled to persuade those in power to move toward a more humane system in large part because of a lack of accessible, disaggregated data that illustrates the demographics and circumstances surrounding restraints and seclusion. In Andre's case, we had difficulty convincing social workers, administrators, and lawyers that anything was wrong with his situation because of an absence of evidence in the form of data. Although some of his restraints had been documented, those restraint reports were not used in an effective way to monitor the frequency, duration, and impact upon Andre. These reports were on paper, and most often found their way to a drawer or file cabinet. There was no acknowledgement that something was wrong with the support plan. The restraints just continued day after day for 2 months. Data has no value unless it is used to make change. It must be thoughtfully analyzed and mined for valuable insights that can help to inform supports for those with disabilities.
The lack of evidence about the frequency of restraints throughout the developmental disability community results in a false impression in the general public that all is well in the treatment of individuals with disabilities, and that cases like Andre's are the exception rather than the rule. Without reliable data, we know very little of the important details that can tell us so much about restraint and how to stop it (Huckshorn, 2004; LeBel et al., 2012). Who is being restrained? What type of restraint? For how long? Were there injuries? In what context did the restraint occur? How often? By whom? Where? These and other questions can give us valuable insight that can move best practice forward without compromising confidentiality. This is a human rights issue that needs to be examined as such. In education, data is routinely collected, generating indicators to measure progress in a wide variety of areas. With analysis of this data progress is regularly measured and monitored. Why not include an indicator that measures progress toward reducing restraint?
In Andre's case, the lack of available data regarding restraints made it difficult for our family to make the case that the use of restraints was a problem that the system needed to address. The prevalence of paper reports rather than an electronic data collection system made it nearly impossible for us to put forward a compelling argument for change. Although an electronic system does not make paper reports unnecessary, it can facilitate more efficient and timely recognition of trends and areas of concern. Our family recommends that every effort should be made to collect and monitor restraint data electronically in order to supply the information necessary to achieve a reduction in restraints.
Everyone deserves a second chance
In our daily lives, we make mistakes and adjust or not, and life goes on. Why should it be different for people with disabilities? It is important for people who exhibit problem behaviors to be given opportunities for behavioral growth (APRAIS, 2008). Andre had a great deal of difficulty being transported in the community for quite some time when he was in his teens. There were those who said that it was not appropriate to take him out into the community because of safety concerns. It was only after much discussion and advocacy by a wise teacher, that it was determined that Andre did just fine if he had spatial accommodations inside the vehicle. Instead of limiting Andre's world by restricting his access to the community, he now felt safe in his environment while travelling. Doesn't that provide a brighter future for Andre? He needed a second chance to succeed.
Our family believes that restraints are an emergency measure and should never be used for anything other than a real emergency, not even for a moment. We feel that any physical intervention should end as soon as the environment becomes safe. It is important to allow an individual who is upset the same leeway that we would want for ourselves. Andre spent nearly two hours in prone restraints one day in school. Was it necessary for him to be held down that long? If I were to put myself in Andre's shoes and imagine what it would be like to be in a restraint with several people holding me against my will, and then imagine that I had stopped struggling but I was still being held, it would infuriate me. I can only imagine what it must feel like in real life. It feels punitive, and it would not seem to encourage growth. The person being restrained is not being allowed the opportunity to gain his composure in a shorter length of time. He is not being allowed a second chance.
Don't give up on anyone
Our family believes that every person with a disability should have the right to a life free from restraints. We feel that this right also extends to individuals who might be at great risk because of their behavioral challenges. Andre is a person who continues to challenge professionals because of his occasional aggressive outbursts and self-abusive behavior. However, his case also clearly demonstrates the benefits of a collaborative approach between families and professionals. He is like others who have baffled the experts in a school or agency and who are at risk of being restrained frequently. Our family's belief is that there is a great deal to be learned from people like Andre, and if a way is found to help in these challenging cases, then that knowledge can likely help others as well. Professionals who have exhausted their usual array of resources to solve problems would do well to venture outside of their comfort zones to bring new ideas to the table. Again, involving family can have the benefit of bringing new insights into conversations about individuals. No one has all of the answers. Our family recommends adopting a goal that every person, regardless of the severity of the behavioral challenges, live a life free from restraints. These people deserve a chance to live a healthy and fulfilling life.
Although many people who support individuals with challenging behavior have shown a commitment to avoiding restraints, the reality is that all too often difficult situations result in physical interventions. Unfortunately, these responses almost always create an even more dangerous environment. It makes sense to notice all of the aspects of every individual's life that make a person feel happy or frustrated. It seems logical to build on strengths while trying to identify and minimize areas of frustration for every individual with a disability. In order to move in a positive direction and decrease the likelihood of restraints, our family asks professionals to examine their respective roles in creating conditions where people can thrive in order to identify steps that can be taken to provide a safe and welcoming environment for all, free from physical interventions.
Finally, our family wants to acknowledge the fact that this work is difficult. We have great respect for those dedicated professionals who work with people who have difficulty managing their frustrations. Please accept these thoughts and recommendations from us as an act of collaboration. It takes great creativity to design a system of supports that promotes growth and safety for individuals who can be aggressive or self-abusive. Many of these people cannot effectively communicate their needs or wishes, yet they experience the same range of emotions, hopes, and dreams as any other person.
The intent of this article is to tell Andre's story and the recommendations included are from our perspective as his parents. We hope that our recommendations encourage dialogue and problem solving around the issue of restraining people with developmental disabilities. Our intent is to allow Andre's experience to help to shine a light on some important factors that can play a role in crafting such a system of support. In a very imperfect way, it feels to us like we are giving voice to Andre and others who are at risk for restraint. We are hopeful that readers of this article might feel prompted to take a fresh look at someone in their care after considering Andre's journey. If that process yields a new approach that helps another individual to live a safer and more productive life, then that is a fantastic outcome. We are confident that Andre would be pleased.
For contributing to this article, we would like to thank Drs. Joanne Eichinger and Jennifer Connolly for their insight, encouragement, and guidance in writing this piece. Their support is greatly appreciated.