Positive Approaches Journal, Volume 8, Issue 1

Volume 8 ► Issue 1 ► 2019

The Science and Art of Support

Volume 8 ► Issue 1 ► 2019

Data Discoveries

Data Discoveries presents useful data in ways that are interesting and customizable. Data presented will be focused on a topic that is relevant for each issue theme and seek to promote new ideas about what data to use and how to use it.

Employment plays an important role in helping individuals with and without a disability live independently and participate in their communities. Providing employment support services is a specialty for some providers, providers include it across multiple types of services they provide, or providers link to employment services separately.

In this issue, Data Discoveries presents employment data from the Office of Developmental Programs (ODP). ODP instituted new questions asking program participants if they have a job and, among those who are working, a variety of questions including the type of job they have and the number of hours they work each week. In this issue of Positive Approaches, Data Discoveries includes employment data that can be filtered over time:

1. The doughnut chart displays the proportion of people in ODP programs who had a competitive, integrated job.

2. The suitcase figure shows the proportion of people with an employment goal on their ISP.

3. Among people who are employed, job types are shown in the bottom bar chart. 

Use the filters for year and season to see how these numbers change over time and to familiarize yourself with Tableau. The filter for seasons applies only to the Job Type figure at the bottom since seasons and corresponding weather impact Job Type trends. The interactive features, including drop down filters, allow for easy viewing of changes over the three years.

Volume 8 ► Issue 1 ► 2019

False Dichotomies in Positive Behavior Support:  One More Time with Emphasis

Linda M. Bambara, Ed. D.

Abstract

In this article I reflect on my personal experiences in the evolution of positive behavior support.  I emphasize that positive behavior support integrates scientifically based behavioral practices, person-centered values, and other theoretical perspectives to address the complex support needs of individuals who present challenging behaviors. Each of these orientations work in concert with one another and should not be separated. Beware of the false dichotomies that cause supporters to argue about the better approach, form allegiances to specific methodologies, rather than the individuals we support, and reject effective practices.

I am truly honored to contribute to the inaugural issue of Positive Approaches.  This provides me with an opportunity to reflect on my over 30-year history in the positive behavior support evolution.  Of course, like many of my contemporaries, my approach was not always positive.  In my first teaching position in a residential school for children and adolescents with emotional and behavior disorders and autism, I demanded compliance.  I praised plenty, but behavioral infractions were met with time outs, seclusion, and physical restraint.  It did not take me long to realize though that my power to positively influence my students, came not from my negative consequences, but through forming positive, genuine, caring relationships with them and honoring their needs.

In the late 1980’s, I came to Lehigh University and directed Lehigh Support for Community Living, a university-based program that provided residential supports to adults with developmental disabilities recently deinstitutionalized from Pennsylvania’s state institutions.  Here, as a young assistant professor, I was faced with the enormous responsibility of facilitating the integration and community acceptance of 18 individuals whose lives had been broken and who communicated their anguish through various forms of self-injury and aggression. It is hard to say where my staff and I drew our strength from to go against conventional practices, but within a few short years, we eliminated all token economy programs and other forms of artificial consequences that were intended to control problem behaviors. “Emergency” restraints, easily misused by staff, were also eliminated.  Reactive, consequence interventions did not reduce the very problem behaviors we sought to reduce, but rather exacerbated them.

A change in approach, a positive approach, was needed, and I, like many of my colleagues nationwide, drew from a variety of sources.  I was influenced by Ted Carr and Mark Durand, behavioral scientists who documented through various research studies that challenging behavior is communicative, and can be eliminated by teaching people alternative means of expressing their needs.  They also made it clear that non-functional interventions, such as imposed punishment or rewards, are nonsensical if the intervention does not address the underlying function of behavior or change problematic contexts that created the need for challenging behaviors. I was also influenced by Herb Lovett, clinical psychologist and disability advocate, who argued that meaningful change, requires understanding people’s histories and social context, learning to listen to the what and how of people’s communication, and responding in ways that maintain personal dignity and respect in ways that all of us want to be treated.  Leaders of the person-centered planning and community integration movements, such as Beth Mount, John O’Brien, Marsha Forrest, and Steve Taylor, were also strongly influential.  Their messages about building capacity rather than remediating deficits and improving quality of life revolutionized the types of supports offered to people with developmental disabilities.  The synergy of all these influences from different orientations gave birth to positive behavior support, or positive approaches as known in Pennsylvania. In the mid-late 90’s, I was a member of the state’s Positive Approaches Committee that was responsible for changing state regulations for residential settings by delimiting or prohibiting “restrictive interventions,” including the use of non-functional rewards, restraints, and seclusion.  As one of the first states to establish policy on restrictive interventions, I proudly wore a “PA in PA” pin (Positive Approaches in Pennsylvania) at national conferences for all to see.

The evolution toward positive behavior support was not met without any controversy.  At first, many argued against the complete elimination of aversives, for after all, some people who present the most extreme challenging behaviors might need it, the logic went. Overtime as professionals gained confidence by making meaningful changes for people with disabilities with difficult behaviors through prevention, teaching, and lifestyle change, arguments about the need for aversive interventions were repudiated and the positive behavior support movement gained nation-wide acceptance. In a seminal article, Positive Behavior Support: Evolution of an Applied Science, Carr and colleagues¹, argued that the uniqueness of positive behavior support rests on the integration of multiple approaches and perspectives (e.g., person-centered planning, systems theory) with an applied science rooted in applied behavior analysis.  These various approaches, they explained, are integrated into a cohesive whole with the primary goal of improving the quality life and happiness of people with developmental disabilities and the secondary goal of reducing problem behavior.

In other words, positive behavior support is a mash-up of scientifically based behavioral practices, person-centered values, and other theoretical orientations, driven by a comprehensive understanding of individual needs.  This makes sense to me, but as soon as these thoughts on PBS were promulgated, a new form of controversy emerged which continues to exist in various forms today. People often like to argue about what is the better, more positive approach, and in the upshot often lose perspective on the most important thing: the lives of people with disabilities. In my article, Are you a Behaviorist or Bonder?², I wrote about the false dichotomies within the positive behavior support movement that divides us.  Do you ascribe to a behavioral, scientific position or a more person-centered, relationship-oriented position when supporting people with disabilities?  Are you a follower of Herb Lovett or Ted Carr?  Do you ascribe to trauma informed care? Dual diagnoses interventions? Should we use only evidence-based practices in our work, or do you reject scientific practices because of their limitations?  These dichotomies, intentionally created or not, cause us to form allegiances around certain approaches rather than form an allegiance to the people we are called upon to support.  People with disabilities deserve the best, and we are best when we are informed by what works and what truly makes a difference in their lives. 

Beware of false dichotomies. Positive behavior support is the marriage between person-centered values, scientific practices, and different theoretical orientations.  These constructs work in coordination with one another and are not meant to be opposing forces. Person-centered values ensure that the supports and services we provide to people with disabilities are meaningful to them and contributes to their happiness.  Person-centered values guide us to consider people’s preferences, hopes and dreams, make changes to improve their quality of life, and treat them respectfully.  The actions taken from a person-centered perspective can by itself reduce challenging behaviors by making positive lifestyle changes, but for many individuals with complex support needs, it is not enough.  I know of loving families who provide the best for their children and still struggle with their children’s difficult behaviors.  Such families would benefit from behavioral strategies to first identify factors that are contributing to challenging behaviors, and then learn how to prevent problem behaviors by making environmental adaptations and teaching specific skills so that their children can cope with difficulties, better communicate, or better control their environments in ways that others can accept and understand. Being person-centered, does not necessarily mean that professionals and families intuitively know how to address the needs of individuals with challenging behaviors even in the best of environments.  Further, values in the absence of scientifically based practices, can lead families and professionals down a perilous path of selecting interventions based on hopes and beliefs, and maybe the testimonials from others, without a shred of evidence of effectiveness.  The autism field, in particular, is replete with unsubstantiated “treatments” that are not only ineffective, but potentially harmful.

On the other hand, the implementation of scientifically based practices in the absence of person-centered values, can create equally disastrous outcomes for people with disabilities and their families.  It is true that of all the intervention approaches developed to teach people with disabilities new skills and reduce problem behaviors, applied behavior analysis-based methods are highly and perhaps, most effective.³ However, in the absence of person-centered values, the application of behavioral approaches can miss the big picture, and trivialize the intervention.  For example, we can easily teach a young man working in a sheltered workshop to appropriately request staff assistance when bored, rather than screaming, however, if the big picture is missed—the young man is bored out of his mind doing repetitive tasks—then what has been accomplished?  In this scenario I predict that the young man would repeatedly request staff attention, albeit appropriately for a while, until the staff find his constant requests intolerable, they ignore him, and then he reverts back to problem behaviors.  One of the chief criticisms of behavioral interventions, is not that they are ineffective, but that they are often not well integrated into a meaningful whole of a person’s life, resulting in socially unacceptable, and at times morally abhorrent practices (e.g., electric shock), causing some supporters to reject anything behavioral. However, it is not that behavioral approaches per se are faulty, but the way they have been applied.  Applied behavior analysis is not a set of discrete techniques, a pre-packaged program or curriculum.  Rather it is a scientific process that guides us to understand and then positively influence human behavior.  It offers a systematic way of comprehensively understanding and changing problematic situations at both proximal (immediately surrounding the person) and distal (broader contextual factors) levels of support. When used within the context of person-centered values and applied in ecologically valid ways to improve quality of life, the form of intervention changes, resulting in powerful and meaningful outcomes for people with disabilities as documented by a vast volume of research.

Finally, person-centered values and behaviorally based scientific practices do not hold all the answers, opening PBS to integrate other theoretical perspectives.   For example, systems theory, ecological psychology, and community psychology have had a huge impact on positive behavior support¹.  These perspectives have been responsible for the multi-tiered systems of support in school-wide positive behavior support, collaborations with families and other stakeholders, and the idea that supporting the people who support individuals with challenging behaviors is essential for success.  Opening ourselves to well informed, but different theoretical frameworks requires a certain amount of humility to know what we do not know, so that we can learn from one another. This does not mean that we reject the basic precepts of PBS, but rather seek to integrate new ideas and approaches to improve and expand supports.

In summary, positive behavior support is an evolving practice that integrates person-centered values with behaviorally based scientific practices and other theoretical orientations to address the comprehensive needs of individuals with developmental disabilities. At the heart of positive behavior support is the person we are seeking to support. Our allegiance is to that person, requiring us to be person-centered while drawing from the most effective approaches science and our collective professional wisdom has to offer.

 

References

1. Carr, E. G., Dunlap, G., Horner, R. H., et al. Positive behavior support: Evolution of an applied science. Journal of Positive behavior Interventions 2002;4(1):4-16.

2. Bambara, L. M. Are you a behaviorist or a bonder? Smashing artificial dichotomies and entering into a dialogue of shared knowledge and multiple perspectives. Journal of Positive Behavior Interventions 2002;4(1):17-20.

3. Smith, T., & Iadarola, S. Evidence base update for autism spectrum disorder. Journal of Clinical Child & Adolescent Psychology 2015;44(6):897-922.

Volume 8 ► Issue 1 ► 2019

Revisiting the Fourfold Positive Approaches Paradigm: Environment, Communication, Assessment,
and Hanging in There.

Beth I. Barol

Abstract

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:

Scenario 1

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.

Scenario 2

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.

Summary

References

Volume 8 ► Issue 1 ► 2019

Providing Individual-Intensive Positive Behavior Support: Do the Ends Justify the Means or Do the Ends and Means Need to be Mutually Justifiable?

Tim Knoster

Abstract

Providing multi-component Positive Behavior Support with children, youth and adults with complex histories of social-emotional-behavioral challenges continues to be perplexing across school, home and community settings. There are various, inter-related reasons behind the perplexing nature of providing such supports that extend beyond the unique needs of each individual in need of individualized Positive Behavior Support. To this end, and as a way to provide some food for thought and perhaps challenge to the field, the following highlights a series of guiding questions for consideration when providing individual-intensive Positive Behavior Support.

___

References

1. Weiss, N., & Knoster, T. (2008). It May Be Nonaversive, But Is It a Positive Approach? Relevant Questions to Ask Throughout the Process of Behavioral Assessment and Intervention. Journal of Positive Behavior Interventions, 10, 72-78.
2. Anda, R.F.,  Felitti, V.J. , Bremner, J.D. , Walker, J.D. , Whitfield, C. , Perry, B.D. , et al. (2006). The enduring effects of abuse and related adverse experiences in childhood. A convergence of evidence from neurobiology and epidemiology. European Archive Psychiatry Clinical Neuroscience; 256 (3): 174 – 86.
3. De Bellis, M.D., & Zisk, A (2014). The biological effects of childhood trauma. Child Adolescent Psychiatry Clinic; 23 (2): 185 – 222.
4. Kuehn, B. (2014). AAP: toxic stress threatens kids’ long-term health. JAMA; 312 (6): 585 – 6.
5. Shonkoff, J.P., Garner, A.S. (2012).  Committee on Psychosocial Aspects of Child and Family Health; Committee on Early Childhood, Adoption, and Dependent Care; Section on Developmental and Behavioral Pediatrics. The lifelong effects of early childhood adversity and toxic stress. Pediatrics; 129 (1): e232 – 46.
6. Hertzman, C. (2013).  The significance of early childhood adversity. Pediatric Child Health; 18 (3): 127 – 8.
7. Felitti, Vincent J; Anda, Robert F; et al. (May 1998). "Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults: The Adverse Childhood Experiences (ACE) Study". American Journal of Preventive Medicine, 14 (4): 245–258.
   

Volume 8 ► Issue 1 ► 2019

Positive Approaches & The Wisdom of Herb Lovett

Guy Legare

Abstract

In Positive Approaches & the Wisdom of Herb Lovett, the author, by revisiting an article written almost twenty years ago, explores how something seemingly so simple, listening, requires mindfulness, feedback, humility and ongoing practice. The implications from years of outcome research are shared and cannot be dismissed; the person you are trying to help is the engine of change. Simple and practical ways of getting regular feedback are discussed to help anyone interested in learning to listen, integrate the art and the science of being helpful.

“Of all tyrannies, a tyranny sincerely exercised for the good of its victims
may be the most oppressive…those who torment us for our own good will do so
without end for they do so with the approval of their own conscience…
This very kindness stings with intolerable insult.” 

– C.S. Lewis

It was exciting to hear that a group of people from the Office of Developmental Programs (ODP) and Office of Mental Health and Substance Abuse Services (OMHSAS) in Pennsylvania were working toward reviving the Pennsylvania Journal on Positive Approaches. Being invited to contribute and offer an occasion to revisit an article submitted almost twenty years ago as a way to reconnect with the spirit of Positive Approaches, is a wonderful opportunity to reflect on how it influenced my ability to listen over the years, how it helped me be present and helpful with others is simply great timing.

In one issue of the original Pennsylvania Journal on Positive Approaches in 2000, a good friend, Susannah Joyce and I collaborated on an article titled: Remembering Herb Lovett ¹. Two years before in 1998, Herb had died in a car accident on his way home from work he was doing in New Hampshire at the time. Years before, when Herb was in Pennsylvania facilitating some workshops and working with small groups, supporting the work of dedicated people who were involved in supporting people with challenging behaviors, he was asked to give these events a title and he simply suggested “positive approaches for people with difficult behavior.” All of a sudden, Positive Approaches was born².

It is impossible for me to think about Positive Approaches without reconnecting with the times I shared with Herb and what I learned from him. Like many others whose lives were touched and transformed by Herb, I believe that both Susannah and I were deeply impacted and transformed by Herb’s capacity for empathy and the way he could attune himself to and be with another person. At the time, as Susannah wrote, we discovered that even between ourselves it was not that simple for us to convey what we felt or all we had learned from Herb. We were simply hoping to share through some personal reflections and stories, some of the gifts and wisdom we had received from Herb and in turn try to stay connected with the spirit of Positive Approaches; to this powerful yet inhabitual way of being with others while trying to listen and help them.

Susannah described beautifully how Herb would try to listen to the person first, be present, even when people were very difficult, appreciating their experiences and the context of their lives. She also wrote about how Herb was constantly inviting others to connect first person to person, while providing respectful and effective clinical expertise to the team supporting that person when needed.

Although I could not articulate it clearly at the time we initially wrote this article as I believe I could do today, I had started to realize that developing a relationship with someone, one based on equality and mutual respect was, as Susannah wrote, the context and the true vehicle for any “help.” In sharing James’s story, someone who I found very challenging to support and help, I was focused on describing how Positive Approaches turned out to be a powerful awakening for me. I had first met James, a very smart, funny and cynical 43-year-old man in 1991. During the previous 25 years, he had been admitted more than 20 times to a large psychiatric institution in our community. Over a period of several months a group of clinicians were involved in developing with him the supports he needed to stay out of the psychiatric facility and successfully live in the community. Despite our best efforts to listen and support James, it became a frustrating experience for everyone involved, especially for James. Positive Approaches allowed me to reconnect with James in ways that I could not have imagined. When I finally heard James and realized I had unintentionally been getting in the way, it transformed the conversation I had with him and my ability to partner with James. What wasn’t as clear to me at the time was why it took me so long to hear him and appreciate something that then became so obviously simple.

In the foreword of Herb’s second book, Learning to Listen: Positive Approaches and People with Difficult Behaviors, Nancy R. Thaler³ who knew Herb well, described two important aspects of the work Herb was doing in Pennsylvania. She explained how he was introducing a new way of thinking and how he was fostering an openness to doing things differently. She also shared how Herb, through personal stories, reflections on his own thinking and actions, would gently expose the harm being done in the name of treatment. Herb would do so without demeaning our past efforts to help and allow us to face the truth about the possible impact of our actions without debilitating embarrassment or shame. Nancy went on to write: “Here the truth was we’d been hurting some people instead of helping them. In fact, we’d been hurting them in the name of helping them.”³

Herb was gifted at presenting the truth in ways that others could see and accept. He would often present information with humor and create an opportunity for the listeners to consider something important he was suggesting, something painful we were unintentionally doing, something we may need to change to be more helpful from the person’s perspective. In 1992 during a two-day workshop Herb was facilitating in New Brunswick, Canada, I heard Herb say something that really resonated with me: “The day I realized as a psychologist I was my clients’ biggest problem, they all started to do a whole lot better.”

At the time of his presentation like many others attending, I smiled and laughed when I heard him, appreciating his humor and wit. I thought about this profound and wise statement often the last twenty some years. I wish I could have a conversation with Herb about this, what it meant to him, how that realization actually happened for him and how he was able to use these lessons to help him learn to listen, be present and connect empathically with others. This would be I am sure, a fascinating conversation.

Similarly, I also have thought about James’s story over the years. I wasn’t, and am not a bad person, I was well intentioned, I was passionate about helping, about making a difference in people’s lives and I was just trying to assist James in having a stable and meaningful life in the community, away from the psychiatric facility he was so often visiting. I was not actively hurting James, but for seven months while I was simply trying to help him, sadly and painfully, I did not really hear him, and I had no idea that was happening.

It was a true gift to meet Herb years ago since it literally changed my life. Of all the things I learned from Herb, two in particular have stood the test of time. They are present in my mind every day, important reminders of what I need to be mindful of when I am trying to listen and hear someone. I have always believed these two critical lessons to be at the core of what Herb called Positive Approaches:

1. Despite my best intent as a helper, I could unintentionally be dismissing someone and not knowingly, be doing something that the person is experiencing as frustrating, unhelpful or hurtful. This was a big part of what happened with James.
2. To implement and practice what Herb was teaching, I would have to be humble, recognize and be comfortable with the fact that I am the one who will first have to change the way I am thinking and acting in order to connect more meaningfully with someone as a person, hopefully becoming more helpful with them. It is only when I started to look at James and his life differently that it became possible for me to consider another possibility.

I am truly grateful for the opportunity to share some reflections on Positive Approaches in the new version of this journal, to consider the art and science of being helpful with individuals we find challenging to support, share some thoughts on how Herb is still influencing my life today and how it has led over time to simple daily practices that are transforming me and others personally as well as professionally.

The Art Being Helpful: Learning to Listen

“The world as we have created it is a process of our thinking.
It cannot be changed without changing our thinking.”

 – Albert Einstein

If I were sharing James’s story today, the emphasis would be on helping others appreciate how much of a gift these kinds of experiences are and how transformative they can be if you take the opportunity to learn from them. James was one of the first few times I had that kind of humbling and transforming experience, but it wasn’t the only one, it was only the beginning of a long learning process for me. This journey the last twenty years has been surprising, sobering, exciting, sometimes painful, difficult, yet very powerful and always meaningful. Since that initial awakening with James, I have been interested in better appreciating why it took me so long, seven months, to hear something that was so obvious once I heard him. Ever since, I have been obsessed with the idea of learning to listen and curious about understanding why something seemingly so simple as listening is actually so much harder to do in practice. I started to explore the following questions:

• How can I be listening to someone without hearing them?
• How is it that in the name of helping him over a period of seven months, I also unintentionally created multiple subtle experiences where James’s identity, feelings, needs, preferences or experiential reality could also be invalidated?
•   How could I unintentionally spend so much time with someone, simply trying to listen to and also unknowingly create an outcome where James could be dehumanized as a partner and fellow human being?
• How is that possible?
• What could I do differently?

It made sense at the time to continue exploring these questions within the context of Positive Approaches since these powerful learning experiences were possible because of the transformation I was experiencing implementing it. As Nancy Thaler wrote² the name Positive Approaches communicated a stance, an attitude, a set of values that should direct what approaches we take in supporting people. The approaches themselves were many.

A really good friend, Beth I. Barol, PhD offered an overview⁴ of Positive Approaches in the premiere issue of the Pennsylvania Journal on Positive Approaches, a quarterly publication created to help people with developmental disabilities and challenging behaviors live fulfilling Everyday Lives. Beth reminded everyone at the time that Positive Approaches was a worldview, one where everyone is treated with dignity and respect. She also introduced the Positive Approaches paradigm, an attempt to conceptualize and organize this worldview in terms relevant to all interacting and supporting individuals we found challenging. The paradigm was a helpful way to organize all these different approaches and perspectives into four major areas: Environment, Communication, Assessment and Hanging in There⁴.

For years I believed I simply needed to become more knowledgeable, practice, pay attention, be mindful and honor what I was learning. I spent a lot of time learning various helpful perspectives or approaches and what I eventually referred to as lenses. The goal was to develop the flexibility and knowledge I thought I needed to be able to explore multiple possibilities, to navigate the four major areas of the Positive Approaches paradigm competently so I could respectfully, based on need, look at things and people differently.

My hope was that all this knowledge would help me improve my ability and capacity to better appreciate someone else’s experience and connect empathically with them in a deeper way. It was important to look at someone’s quality of life; at how they are spending their days; at how lonely and disfranchised the person could be; at how little control someone might have over their life; at what they could be communicating; at how dual diagnosis, trauma, their biography and history could be impacting their ability to have the life they want; how sensory issues could affect someone, how pain or medical conditions could influence the person, etc. There was something very helpful in learning to appreciate how all these lenses were helping me understand various aspects of the person’s life. This indeed helped me assist teams and provide respectful and effective clinical expertise when it was needed.

What I also learned from people during those years is that all these lenses and approaches actually got in the way and did not really help me connect with people in a deeper empathic way. In fact, I started to realize that even though these lenses can help you focus, help you see something new, all these lenses, when you adopt them, come with some risks. It is important to know that they also limit what you can see and hear when you chose to use them. For example, when I start to think that the person may be showing signs and symptoms of a mental health issue, it is hard to focus on something else. It is also easy to forget that as human beings, we have a tendency to search for, interpret and favor information in a way that confirms one’s preexisting beliefs or hypothesis.

I became increasingly aware that when I was looking at, or listening to someone through these lenses, when I was trying to interpret, assess, evaluate or make sense of what I saw and heard through them, I actually was not listening to the person. I was busy thinking, trying to make connections but I was not present with them, not really listening to their experiences, especially appreciating how I could be impacting them in the name of helping.

The larger lesson I was learning was not just about the value of these lenses or approaches, but much more about how I was using them in the moment with someone. It became clear that I also needed to pay attention to my own thinking, I needed to become much more aware of the choices I was making in the moment when listening to someone. To be able to really move from control to empathy and true collaboration, I would really need to increase my awareness of how my own needs and thoughts (in the moment) could shape and influence what I saw, heard and understood. I needed to develop and practice the kind of mindfulness and presence that I could use to develop a deeper empathic connection with someone. So I started exploring different kinds of questions:

• What kind of practices could help me grow and become more attuned to others in the moment?
• What can I practice daily that would decrease the likelihood that I might unintentionally recreate that experience with someone I am supporting and trying to help?
• What kind of safeguards can I put in place to ensure I first really connect with the person?
• How could I make sure (as Herb would say) that I would never be or become the person’s biggest problem?
•  More importantly, how would I know in the moment that I am listening, that I am helpful?

Looking back again at James’s story, seven months in and because I felt frustrated and had no clue what else I should do, out of desperation I asked James what he thought and asked him for help. Today I cannot help but wonder how much sooner I would have been able to hear him, had I been present, aware that I could be his biggest problem or if I had simply checked in and asked him how helpful I actually was.

The Science of Being Helpful: Being Driven by Feedback

“Divorced from systemic, reliable, and valid feedback about the process
and outcomes (subjective experience of the person) for almost everything we do,
the field has become a jumble of competing, complicated and often
contradictory approaches to treatment, services and supports.”

– Institute for the Study of Therapeutic Change (ISTC), 2001

In the early 1990s, Mark Hubble, Barry Duncan and Scott Miller, three clinicians, got together and started to collaborate in an effort to share helpful information about what works in therapy based on the lessons learned from the important work of outcome researchers the last previous years. The Institute for the Study of Therapeutic Change (ISTC) was created. Eventually, their work led to the publication in 1999 of the first edition of The Heart & Soul of Change: What Works in Therapy⁵. The second and updated edition The Heart & Soul of Change: Delivering What Works in Therapy⁶ was published in 2010. As editors, they assembled the best outcome researchers and practitioners and summarized what works in psychotherapy and how to best deliver it.

The outcome research was challenging the prevailing view that to be an accomplished psychotherapist one must be well versed in evidence-based treatments (EBTs) or in those models that have been shown in randomized clinical trials (RCTs) to be efficacious for different “disorders.” In reality, the role of various models or approaches as a specific factor in the change turned out to be minimal.

The implications from years of outcome research are clear and cannot be dismissed; the person you are trying to help is the engine of change.^5,6,7 Therefore, the person’s perspective and involvement in the planning and delivery of how we do what we do to help them, is absolutely critical. It suggests that as helpers we need to take our direction from the person, follow their lead, accept (when it is safe to do so) the person’s goal and also have a way for the person to confirm that what we do is actually helpful for them.

From this perspective there are no a priori assumptions about the person or challenging behaviors, or solutions, no special questions or series of questions that are best to ask, and no invariant or systematic methodology that needs to be followed. Rather, as a support person or a helper, you follow the person’s lead, listening intently and carefully. The person’s perception of the problem and what would be helpful is what really matters in all this.

Early on the Institute for the Study of Therapeutic Change (ISTC) developed the Session Rating Scale (SRS) and the Outcome Rating Scale (ORS) to help clinicians appreciate the person’s perspective on all this. Both the SRS and ORS are simple four item scales. They are actually soliciting the person’s perspective or feedback regarding factors proven to predict success, regardless of the population, treatment modality, or presenting problem. Both are simple measures a therapist could use to quickly get feedback from the person every time they met^5,6,7,8.

Since then, these simple measures were implemented, tested, evaluated and eventually validated. They became part of a larger outcome management system: The Partners for Change Outcome Management System (PCOMS)^9,10. The Substance Abuse and Mental Health Administration is now listing PCOMS as an evidence-based practice. It is different from what is usually considered evidence based because feedback is a theoretical and therefore something you can add to any therapeutic orientation or approach and it can apply to people and clients of all diagnostic categories¹¹. The work being done to help someone is literally feedback informed and driven.

The use of these scales is helpful but the conversation that should ensue with the person once you genuinely ask for feedback is what has the potential to transform your abilities and effectiveness as a helper. Having the person rating how well you are doing as a helper and how effective you are can be scary and it is a powerful act. This brings the person’s voice back in the partnership as long as the helper you can receive the feedback you sought as a gift. Feedback is a gift since it allows us as helpers to adjust and correct what we do quickly, to attune to the person’s preferences, it allows us to focus on the quality of the relationship and maximizes the person participation in the partnership. Soliciting systematic feedback and the opportunity for real conversations it creates provides a transparent, ongoing interpersonal process that solicits the person’s help in creating the necessary partnership and collaboration to ensure a positive outcome.

Today, when I reflect back on the journey I embarked on since I first met James and the search for a way to ensure that I would not become someone’s biggest problem when trying to help, seems so obvious. The key was simply to be mindful and attentive to the feedback from James and be humble enough to simply check in with him to ensure that what I believed was happening was also what he was experiencing. Had I been able to do this at the time, it would have allowed me to appreciate the impact I had on him; it would have been an early-warning system, giving me a chance to adjust quickly, maybe chart a different course with him, minimize his frustration, increase the likelihood we were going to reach the outcome we were both hoping for sooner and in the process to boot, assist me in becoming a better helper.

Final Thoughts

We collectively as a system have changed a lot since Herb was last here in Pennsylvania. However, most systems of support or helpers still have a tremendous amount of influence or power over the people who need assistance and supports. This power can be visible and obvious, but it is more often hidden and communicated through assumptions, language, and expectations. Even though we mean well, we have learned that what we do in the name of helping often unintentionally creates conditions where the people we are trying to support also experience situations where their most basic human needs are not being met.

When most of us start in this field we are convinced that we have the best intentions when we are trying to help. Very few of us have had the opportunity to realize and appreciate that the person’s responses to what we do are often the only way they have to let us know that even though we mean well, our actions and what we do to help them, is actually not that helpful for them. Over the past twenty years I have often experienced that even with the best intentions to help, my words and actions often have unintended consequences. Examining how you might unintentionally be contributing to the person’s problems when you are convinced you are only trying to help requires a willingness to learn; it can be hard work, but it is also exciting and rewarding.

In the preface of his second book, Learning to Listen: Positive Approaches and People with Difficult Behaviors³, Herb was already recognizing that naming this attitude, this way of thinking, this way of speculating empathically or this way of life where one, as a helper, moves from control to collaboration was a mixed blessing. Herb understood that nothing named can hope to remain the same and that new names and phrases always run the risk of becoming spiffy euphemisms for “business as usual”³. What Herb feared is exactly what happened. Over the last twenty years from my point of view, it seems like we have gradually shifted towards a more clinical perspective in nature. We have unintentionally lost sight of the importance of truly being present with someone, of listening deeply to another and to fully appreciate the transforming power of empathy and collaboration. In the original article¹, Susannah shared a powerful story about Herb at his best, listening, present and Michael, a young man who was living in a large mental health institution. Herb had started a circle of support a few years before to help Michael find a meaningful life in the community. She described how one afternoon while they were out with Michael, sitting at a picnic table in a park, planning how to best support Michael, sharing sodas and fries, Michael started to sob. In response Herb put his arm around Michael, held him for many minutes before they had to leave and bring Michael back to his ward. Herb offered him what comfort he could in an impossible situation; everything else Herb did trying to help, sprang from that center of compassion.

It is my hope that restarting The Pennsylvania Journal on Positive Approaches will not only be an opportunity to explore and celebrate best practices but more importantly, to revisit and reconnect with the spirit of exploration; to honor the feedback the people are always offering us about how helpful we are; to reconsider the possibilities we know exist beyond a clinical lens and to continue getting better at working with – rather than on – people.

References