Positive Approaches Journal, Volume 8, Issue 1
Barol | 13-26
Volume 8 ► Issue 1 ► 2019
Revisiting the Fourfold Positive Approaches Paradigm: Environment, Communication, Assessment,
and Hanging in There.
Beth I. Barol
This article briefly reviews some of the advances in knowledge and treatment over the past 20 years for individuals with Intellectual Disability who have challenging behaviors. Revisiting the Positive Approaches Paradigm of “Environment, Communication, Assessment, and Hanging in There” the author explores the importance of continuing to focus on the compassionate education and training of the direct supporters to bring advances into the lives of people most in need of trauma-informed person-centered supports. She offers the Biographical Timeline process as one approach that can help transform the helping relationships, coordinate available resources and supports, and thereby assure positive outcomes.
Twenty-two years ago, the PA Positive Approaches Journal was launched with the intent to advocate for practices that would support people with behaviors that got in the way of living a fulfilling life. The journal was focused on sharing the successes and lessons learned in enacting the Positive Approaches fourfold paradigm: Environment, Communication, Assessment, and Hanging in There. Drawing on our original Positive Approaches article, the four elements of the paradigm are excerpted as follows1:
Environment: Most of the time when people exhibit challenging behaviors * we discover that a close look at that person’s environment shows us why the person is having difficulty. In roughly three-quarters of the situations in which we have been asked to consult, a person’s behaviors change for the better when they are helped to live in a manner that better meets their needs.
Communication: Often the person challenging us to understand cannot articulate wants and needs. Positive Approaches obliges supporters of a person with challenging behaviors to do whatever is possible to enable the person to communicate When a person cannot communicate, frustration becomes part of every interaction. When a person can communicate, the frustration disappears, and often, so does the problematic behavior.
Assessment: Even after the environmental and communication needs have been addressed, some individuals still evince challenging behaviors. Prompt assessment, diagnosis and syndrome- related treatment are vital tools in the Positive Approaches repertoire. Every concern that is relevant to typical citizens is also relevant to people with developmental disabilities. Problems such as trauma, loss, sexuality issues and abuse, loneliness, powerlessness, and addiction should be addressed.
Even with all of the needed supports, opportunities, and conditions in place, a
person who has lived a life full of hardship, isolation, stigma, and sorrow may
have problems that continue for a long time. For those with the most serious
challenges, finding someone to persevere with them has proven difficult, once
found, that person has more impact on their lives than anything or anyone else.
As part of our drive for better person-centered assessment, we advocated for a rich appreciation of the impact of trauma on people’s lives, neurological differences, syndrome-based diagnosis, rather than the then predominant diagnosis only based on individual behaviors, diagnosis-based psychopharmacology rather than the practice at the time of using medications mainly for sedation and behavior control, and the relationship between physical health and mental health. We worked to broaden the array of effective treatments, interventions, and supports surrounding these issues without allowing the diagnosis of intellectual disability (ID) to automatically exclude diagnosis and treatment co-occurring mental and physical health issues.
Advances in Knowledge
The past 20 years has seen many advances in our knowledge about the brain, the brain/body continuum, trauma and its treatment, physical and mental health diagnosis, new medications, a better understanding of genetics, genetic testing2, and environmental factors as they relate to health and disability, to name a few. The array of treatment options that are effective for the neurotypical population has also grown, from a wider range of “talking therapies” to somatic therapies3,4 holistic health approaches, and neuro feedback5 and neuro entrainment; external stimulation to promote certain frequencies in the brain6,7. The possibilities expand on a continuous basis with very promising potentials to help people heal and recover from head injuries, traumas, neurological challenges and mental illness.8,9,10
However, as exciting as these new discoveries and innovations are, I have observed in my practice that there is still a wide gap between what is known or know-able and what is available to most of the population in need of these creative approaches. The gap between knowledge and practice is wider still for people who have intellectual and cognitive differences (i.e., ID). There are relatively few clinicians and practitioners who are skilled in the aforementioned advancements and are willing and able to offer their skills to people with ID. Many clinicians have told me that the diagnosis of ID continues to supersede any other assessment of root causes for the observed challenging behavior. They say that their clinical training has been to only offer behavior management as their primary treatment modality. We continue to focus on helping these clinicians broaden their assessment beyond the context of intellectual disability, noticing and addressing issues such as the wide array of mental illness, trauma, and neurological differences and applying promising practices, available to the neurotypical population to address the person’s specific issues.
In this article I will briefly focus on how the role of direct supporters is one of the key means to assure that many of the advances in knowledge and practice will become available to people with developmental disabilities. I will discuss the concept of the Social Therapist as the direct support person who, with training and support, implements promising practices, advocates for necessary services, and plays a vital role in the team. I will also describe how the use of a biographical timeline approach to transform a team’s view of a person, in conjunction with person-oriented trauma training, results in powerfully positive results.
The Social Therapist
Pivotal to the fourfold paradigm of Positive Approaches are the “social therapists.” This term, as used in this article, is an elaboration upon the wording as used by Anthroposophist, Karl Koenig through the curative education focus of the international Camphill Movement.11 A social therapist can be a family member, friend, direct care professional, teacher, supports coordinator, or any other person who comes in regular contact with an individual. Social therapists have the training and skills to intentionally gear interactions, environments, and activities towards the well-being, healing, and empowerment of those they are supporting.
Social therapists are, with the exception of the person they are supporting, the most crucial members of the team. They are the ones who deeply know the person, are attuned to the person’s rhythms, needs, joys, health, and relevant details in their daily lives. They are the people who help the person experience warmth and a positive mirror of themselves. They offer the opportunity for the person they support to feel known, emotionally held, safe to explore their environment, develop new skills, and grow when they are ready. A social therapist is skilled at timing, knowing when to press for opportunities for further growth, such as learning new skills and practicing mastered skills, and when to back off and offer supports to relax and unwind. They know when their immediate presence is necessary and when space and time to oneself is the preferable option.
Social therapists give vital information to the rest of the team to use when designing clinical and additional therapeutic supports. They help assure that the clinicians and other professionals have an opportunity to apply their valuable skill in a person-centered manner and they are the key to implementing a person-directed holistic support model, including attention to calming practices, exercise, and healthy nutrition on a daily basis. These are the people in one’s daily life who are trustworthy, dependable, present, and compassionate. Through their relationships, they provide the human environment where a person can flourish and an environment in which any additional therapeutic intervention has a chance to make a meaningful impact.
And yet, very often the direct supporters are not thought of as social therapists or those who have the potential to be social therapists. They are seen as “babysitters,” physical care givers, safety monitors, and enforcers. While there are many agencies, facilities, and providers of service that do focus on developing the social therapist, sadly, this vital component is overlooked by most. Staff training is focused more on meeting regulations and safety procedures than on inspiration, knowledge enhancement, creative approaches to everyday situations, role modeling and processing the day or week with an experienced mentor.
Through years of consulting and training nationally and internationally, I have observed a common theme. Direct supporters are often assigned to work with a person without knowing anything about the person except their challenging behaviors and the behavior plan to address these behaviors. In this experience, without training, ongoing mentoring and support, direct supporters are often left conceptualize their role as being responsible for containing or extinguishing the challenging behaviors without being afforded the opportunity to have the full context for these behaviors. Facing individuals with challenging behaviors on a regular basis without feeling that they have the skills or resources to feel safe and to make a positive difference can be very stressful, frustrating and intimidating for the support person. Their image of the person they are assigned to support often becomes one of a mean-spirited or manipulative troublemaker, or as someone who is totally different from anyone they can understand.
When this type of othering and demonizing occurs, there are several tools and processes that can be employed to help transform the relationship between the person being supported and their caregiver. One such tool is the Biographical Timeline, a process that helps transform the caregivers into a social therapist working on the behalf of the person.
The Biographical Timeline - Teaching to the Adult Learner
The Biographical Timeline is a tool that we use to achieve a deeper and more meaningful understanding of a human being who is struggling, and with whom we need to transform our relationship. In sum, the Biographical Timeline can be described as:
A tool that works best when the entire team is present and can together examine the information gleaned from records, interviews, and first-hand knowledge about the person. Events and personal experiences (often thought of as “insignificant” in other contexts) that were previously stored in compartmentalized reports and files, are grouped according to their occurrence along a linear life-timeline.12
The facilitator, who brings the team together, guides the group process, gleans the information from the participating team and use the opportunity to identify wounds (painful emotional and physical experiences), issues, and missed opportunities in the person’s life. Together they explore the meaning of these experiences and how they shape the person’s worldview, sense of self, and when relevant the person’s trauma story. This provides the facilitator, or members of the team, an opportunity to teach others about trauma, neurological differences, and mental illness as they relate to the subject of the biographical timeline. By filling in the knowledge-gap, the social therapists and other team members are better prepared to creatively come up with daily life supports and make specific treatment recommendations. The following two scenarios demonstrate the increased potential of social therapists when they have the opportunity to build compassion towards the person they struggle to support, in conjunction with training on elements specific to the person’s biography and issues.
Eric was an 18-year-old young man who had very challenging behaviors. He would consistently hurt himself and lash out at others. A few weeks before his biographical timeline he had bitten one of his thumbs so severely that the doctors had to amputate it. After that, he was made to wear mitts on both hands most of the time. He was locked in his bedroom room day and night, because he was so violent towards staff, particularly women, often punching them in their faces if they were in his vicinity. His school refused to let him return to class due to his aggressive behavior. He was not verbal but had a creative sign language repertoire that he invented to communicate. Staff would often refuse to respond to his signs, insisting that he use the “correct” signs to communicate. His staff indicated that they were afraid of him and that they hated working with him. At the point of the timeline, he did not have any therapeutic program or a diagnosis other than “ID”. He was placed on antipsychotic medications for sedation, but according to the staff the medication was not effective.
The staff completed a record review prior to the biographical timeline meeting and the adoptive father also attended the meeting in order to fill in the knowledge gap about Eric’s early life. The story that unfolded was one of abandonment, and abuse and pain. He was dropped off at a hospital when he was one-day-old by a mother that was presumed to abuse alcohol. He never saw her again. He was then placed in a ward that was severely overcrowded, and afforded no individual attention, touch or comfort. He lived in a crib in that ward for the first year of his life. At this point we stopped the narrative and invited the staff to talk about early development and the possible ramification of this experience, neurologically and socially, supplementing the staff’s knowledge with mini lectures on development, trauma, and so on. The staff was moved by his experience and was able to compassionately talk about what he needed as a baby to have a better chance in life.
As the day continued, the staff saw that each stage of this child’s early life, before his eventual adoption by a caring family, was full of abuse and neglect. They were able to identify the effects of his traumatic experiences on his body, his responses to others, and his communication. They articulated how they now saw that their well-meaning, initial interventions were not tailored to his needs and his challenging behaviors increased as a result. As his fear-driven behavior issues escalated, the staff’s punitive responses escalated in return. It had never occurred to them that someone as scary as Eric could be afraid and just trying to survive.
After examining Eric’s life for a day and a half, the entire group listed the many painful emotional and physical wounds, issues, and missed opportunities in his life. They then moved into a brainstorming session where they excitedly postulated what it might take for him to heal and grow in the future, given their understanding of development and trauma. They then developed a very creative approach to his daily living. Several men volunteered to be his mentors observing what he enjoyed doing and introducing him to crafts and activities, including painting, pottery and gardening. They decided to learn his signs and work with him to add pictures to enhance their communication. They also decided to focus on developing trust and realized that it was their responsibility to become present and predictable. They decided to find out which affective styles worked with him and to pitch their responses to the affective mode that best met his needs. Their primary focus was going to be soothing, calming, and helping his body de-escalate from years of trauma. Later they shared their findings with the psychiatrist, who was in turn able to make an informed diagnosis and prescribe medication to address Eric’s anxiety rather than resorting to sedation medications.
Six months later, the staff was jubilant about the progress that they and Eric had made. No longer confined to his bedroom, Eric was spending time skateboarding and riding a bicycle, he was eating meals with his house mates, he was no longer aggressing against women on staff and even liked one or two. He was going outside and painting with one of the direct supporters (now social therapist) who was an artist. They discovered that he found pushing a heavy wheelbarrow in the garden to be a calming activity and so they included this in his daily routine. They all reveled in being creative and enjoyed working with Eric.
Joey was a nice man. He was very social and loved being with people. While he couldn’t read or write, and he had trouble with articulation, he loved to talk with people. He was caring and would ask how the other person was doing, showing empathy in his responses. He would often say that he was upset. He would express being “scared” and worried though he was not always able to explain why. He would not want to be alone. There were other times when Joey was in his own world, he would shut himself in his room, he would yell, cry, and destroy his possessions. Sometimes he would wet himself. Sometimes he would wander off and get lost. Sometimes he would get cut while destroying a piece of equipment. He would often try to cover up what he had done with excuses, other times, he would just look blankly and say that he didn’t know what had happened.
Joey was often considered to be very competent. He was allowed to go out on his own all day. During those times, he would take public transportation independently, hang out in stores or the mall, and drink soda all day. Sometimes he would not come home when expected, having unexplainably have gotten lost, or forgotten where he lived. Once found, he usually had a distant, vague expression and affect, and would take a few minutes to hours to return to his usually friendly self. All change was unnerving for Joey. Staff change in particular was unnerving, he was afraid that he might again be victimized and neglected by new caregivers. He was afraid to say something that might anger staff, afraid that an angry person might abandon him, or abuse him, or send him away. It seemed to him that not answering accurately about what happened was the safest option.
The direct care staff didn’t know what to make of this. They were worried for him and afraid for their jobs when he did this. Despite being deemed to be able to spend time unsupervised, staff became strict and scolding when he didn’t behave in a manner that met their expectations. They would respond as if he had personally let them down when he would become upset, destroy property, hurt himself, yell or cry. They wanted to control his challenging behaviors. They wanted to force him to own up to his behavior with the idea that this would make him stop the behavior. “What did you do?” “Did you do that?”, they would ask using accusing voice tones. Their relationships spiraled downhill. Staff started to question if Joey should be hospitalized for self-harm.
The direct support staff did not know anything about Joey’s past, even though it was known to the agency directors. Perhaps they felt that the direct support staff did not need to know about the years of trauma and abandonment he had experienced from infancy forward, the multiple losses of loved ones, or his nagging fear that if things changed, he might end up back in an institution (an experience in his childhood that he hated and feared). Perhaps they thought, like many people in our field thought, that the past was not relevant to the present behaviors and intervention strategies. When the staff learned about elements of his life story and the array of traumatic experiences, they showed more empathy towards him, however they did not have appropriate training for trauma-informed care.
Joey then transferred to another agency with a different culture, and which also trained their staff on trauma-informed care and how to be social therapists. When they were given information about Joey’s history, they had the necessary tools to create an effective plan. Trained as social therapists, staff were able to recognize triggers and worked proactively to meet Joey’s need for warmth, predictability, and reassurance. They created opportunities to build his self-esteem and engage in meaningful activities. This informed approach had an immediate impact on Joey. He became clearer, more articulate, and much more relaxed. He enjoyed being with his social therapists, engaging in meaningful activities and practicing mindfulness in his daily life. He was also supported in making friends, something for which he had been searching for years.
As we saw in the two scenarios, staff may be left on their own without education, training or supervisory support, and yet we expected them to be able to effectively help the individuals they are supporting. Furthermore, many culturally normative child-rearing practices are counterproductive and unhelpful to the people who are overcoming trauma. Untrained staff may respond to challenging behaviors with the same harshness they may have experienced from their own caregivers and teachers to make them toe the line. They will often say “see, I turned out alright”, and credit the harsh treatment with their success. We need to consciously help staff see another way to get positive results without resorting to violent communication.13,14
Our staff training therefore needs to start with the basics of human interaction, non-violent communication styles, and affirmative relating, including bonding, attachment and rich communication. Direct supporters need to be taught the fundamentals of trauma and how it effects the body, the cognitions, and the emotions. They need to be able to brainstorm, with clinical support and guidance, and have the means to apply what they are now being exposed to regarding trauma and its treatment, to the daily, even hour by hour needs of the person they are endeavoring to support. They need to be able to talk about the style of interactions they want to pursue, drilling down to tones of voice for example, and the relevant activities that would further the person’s wishes and desires. They also need to explore together the helpful versus harmful use of power in their relationships with the individuals they support.
The well-trained social therapists understand that the health of the body directly affects the mental health of the individuals they support. They continuously seek the means to ensure that the healthy lifestyles recommended to all of us, to maintain health and to heal from so many physical and emotional issues are part of daily life: that people they support live in a healthy environment, eat a diet that supports their health, exercise daily, and have a good night’s sleep. They become versed in a variety of techniques that can sooth the autonomic nervous system and relieve stress, such as art, music, mindfulness, and yoga, and help incorporate them into daily life.
During the past 22 years there has been considerable advancement in our understanding of the root causes and treatment of many of the issues that affect us all. This includes an evolution of knowledge in our understanding of trauma, mental illness, and physical health. Bringing the benefits of these advances to the people we support is all of our responsibility. While we each need to continuously explore new knowledge and promising practices to best support people regardless of our role, we have to simultaneously realize that the most important people in the lives of the people we support are the social therapists. If we cherish them and assure that they have the knowledge, skill, and resources to create a healing environment, promote rich communication, and build the personal supports to enable them to hang in there for as long as possible, we will see the people we have struggled to support reap the benefits of these advances and live more fulfilling lives.
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