Research and Practice for Persons with Severe Disabilities

Research and Practice for Persons with Severe Disabilities
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Transcript   Research and Practice for Persons with Severe Disabilities2019, Vol. 44(2) 122  –127© The Author(s) 2019 Article reuse DOI: 10.1177/ Tribute Paul Bates: A Tribute to His Legacy Paul Wehman 1 , Adelle Renzaglia 2 , Keith Storey 3 , and Paula Davis 4   On December 18, 2018, the field of special education lost one of its greatest pioneers for youth and adults with severe disabilities. Paul Bates, PhD, a beloved family member, colleague, teacher, and advocate val-iantly succumbed to a sudden illness that took him prematurely away from all of us. Reflections by Paul Wehman It is with great sadness that I say goodbye to my longtime friend, Paul Bates, who has had such an extraor-dinary impact on my own life and so, so many others in our field as well as his family. Paul was one of the most dynamic leaders in the world in the area of transition from school to adulthood for youth with the greatest challenges and support needs. His impact was immeasurable because he touched so many people in so many positive and uplifting, yet humble ways. Paul was always an advocate, always a patient teacher, and always a kind person to all. He had a continually inquisitive mind trying to find a better way to help teachers, transition specialists, counselors, students, and so many others.These are the ways we must begin to frame his legacy, which was wide reaching, not just in the ways of academia where success is often only counted by journal articles. But, far more importantly, by the number of people he directly and indirectly impacted with his talks and his technical assistance. Perhaps, above all, Paul demonstrated a rapid and keen empathy for what the challenges were that needed to be overcome for young people looking for real work and looking to integrate in the community.I was lucky enough to know and work with Paul at the very early stages of his career so I got a great look at his work ethic and intellect but especially his tenaciousness. We first met at Illinois State University in the Psychology department where I first saw this guy with long blond hair “running rats.” Little did I know that, a few years later, we would take those applied behavior analysis skills to Lincoln (Illinois) Developmental Center, which at that time was a large state institution situated in the middle of a corn field. We both advo-cated like crazy to help the people we worked with become “deinstitutionalized”; we both worked to teach toilet training to adults with very high support needs; we both worked to teach more functional skills as a replacement to headbanging. And we had a great time doing all of this. This was our calling, Paul, myself, and several other young people who were determined to save the world. Little did Paul or I know at the time  but these years would set the foundation for much of our life’s work.From there I went onto the University of Wisconsin–Madison after being inspired by Lou Brown, PhD, who came to Illinois for a talk. Shortly thereafter, Paul and his family came to Madison and joined up with Adelle Renzaglia, PhD, and me. The three of us continued to try and save the world but also had such a good time. Paul then went ahead and not only earned his PhD but also additionally earned his second master’s 1 Virginia Commonwealth University, Richmond, VA, USA 2 University of Illinois at Urbana–Champaign, IL, USA 3  Juvo Autism and Behavioral Health Services, Oakland, CA, USA 4 Southern Illinois University, Carbondale, IL, USA Corresponding Author: Paul Wehman, Virginia Commonwealth University Rehabilitation Research and Training Center, 1314 West Main Street, PO Box 842011, Richmond, VA 23284-2011, USA.Email: 844988 RPS   XX   X   10.1177/1540796919844988Research and Practicefor Personswith SevereDisabilities  Wehman etal. research-article   2019  Wehman et al. 123 degree, this time in social work, at the same time. This led him to a long and distinguished career for 29 years as a professor at Southern Illinois University (SIU).It was during this time that Paul’s impact on his masters’ and doctoral students began to formulate. He was a highly active and sought-after speaker at state and national conferences because of the way he talked to people, not down to people. Always the personality, humility, and advocacy came through and he always looked you straight in the eye. We consulted together in several states and he was always able to so easily transfer his knowledge on transition (i.e., self-determination) into practical ways teachers and other provid-ers could use for immediate improvement in the classroom.Paul’s writings showed consistent themes, which were community-based functional training, self-deter-mination, work, and community integration. Paul, Adelle, and I even did a book titled  Functional Living Skills for Individuals with Moderate and Severe Disabilities  (Wehman, Renzaglia, & Bates, 1985) in these early years where we tried to share our values on making classroom programs practical and age appropriate. Paul did many studies when at SIU providing evidence-based research on the efficacy of this functional training approach; he was one of the early pioneers in this area.So, as I look back on his life, what are the things I most remember? And what are the things that I want our colleagues, young and old alike, to remember? First, be fierce in your beliefs, values, and advocacy like Paul Bates. He never ever wavered. Second, understand that research is not something to be feared but embraced. Paul did not do research just to do it. He wrote papers, conducted research, and presented research on transition for a purpose and that purpose was to create new knowledge that could transfer to teachers and families. Third, I was so fortunate to see the impact and growth of Paul’s family over 45 years and I came to understand how much his family directly influenced his work. Permit me one example. Paul was a huge  basketball fan and loved watching his beloved SIU team play. Even better, he enjoyed watching his son Dylan play, a star point guard who led his basketball team to the state championship game in Illinois. Paul’s love of youth came through in this way and culminated in a terrific book called Vicarious Thrills: A Championship Season of High School Basketball   (Bates, 1995), which my own boys read as youth. Paul got it published in his tenacious way. I could see how the impact of Dylan as a talented athlete, physical thera- pist, and eventually businessman directly affected Paul’s work.Let me close by saying I dearly miss my friend. I could call him any time or him me and we would immediately hit the ground running, catching up, and of course laughing; but, that is what Paul liked to do more than anything else. Paul did what we all aspire to do: He left the world a much better place, he left a legacy of knowledge for those who have the greatest needs, and he left his family and friends with what a true role model should look like. We all should do so well. Reflections by Adelle Renzaglia I first met Paul in January 1976 when he began his graduate studies at Wisconsin. I was in the midst of my master’s program as he began his. Fortunately, Paul was invited to join the grant team on which Paul Wehman and I worked. He immediately became an invaluable member of the team and brought enthusiasm, innovation, and excellence to our emerging knowledge and expertise in the area of educating and training adolescents and adults with significant intellectual disability. His pioneering work, even as a graduate stu-dent, provided needed evidence that everyone can learn, regardless of assessed ability, and that those with the most significant intellectual disability are able to fully participate in community life. Paul was a remark-able graduate student, unlike anyone else I knew. He began his graduate studies with a young family of four, including a newborn and young toddler, to whom he was devoted. Even so, he completed two master’s degrees (social work and special education) and a PhD in 2 years and 9 months. Along the way, he made significant contributions to our knowledge and practice in developing programs for individuals with signifi-cant intellectual disability. Even his doctoral dissertation was a significant contribution, investigating meth-ods of teaching social skills to adults with intellectual disability (published in the  Journal of Applied  Behavior Analysis ; Bates, 1980).Throughout his career, Paul was committed to creating opportunities for those with the most signifi-cant disabilities to obtain socially equitable living, work, and social outcomes. In addition, his social  124  Research and Practice for Persons with Severe Disabilities 44(2) work background brought to the forefront his desire to work with families, of individuals with intellec-tual disability, to provide support and strategies to increase quality of life for all family members. He quickly became nationally recognized for his contributions to our knowledge and practices in transition and personal futures planning. In fact, he led efforts in the State of Illinois to develop statewide policies and procedures for effective and productive transition planning for youths with disabilities. Paul’s efforts to impact positive outcomes for individuals with intellectual disability crossed all areas of life including community, work, social relationships, recreation, and leisure. He was most concerned that individuals are self-determined and have choice and voice in their own lives. His development of a self-directed Individualized Education Program (IEP) process and his work in person-centered planning are evidence of this. Without a doubt, Paul had a profound impact on how we perceive individuals with disabilities and the opportunities we provide.Paul was an extraordinary individual. He was a trusted colleague whose support and collaboration were invaluable to me, but more importantly, he was my friend. He knew no strangers and befriended all those he met. He brought energy, enthusiasm, kindness, and acceptance to all situations. Paul was a champion for individuals with disabilities. He cared deeply about making life better for those whose opportunities are artificially limited. He was a mentor and friend to his students and provided support and encouragement to his colleagues across the nation. He brought people together around issues and  provided leadership in developing solutions. Paul had a wonderful sense of humor, which brought  people together, strengthened community, and created a sense of acceptance. Without question, he  brought out the best in everyone.Above all, Paul was devoted to his family. He was a loving husband, proud father, and grandfather, who cherished every minute he had with those he loved. He wasted little time, took advantage of life and all that it had to offer. He provided all of us with a model to emulate. He will be missed!! Reflections by Keith Storey In February of 1981, when I was a teacher, I attended a state conference on individuals with severe dis-abilities. I was fortunate in choosing to attend a presentation by Paul Bates on longitudinal vocational studies. It was a very impressive presentation and was novel at the time in that he not only had the vision that people with severe disabilities could work at real jobs in the community (at that point the vast majority of people lived lives of segregation) but also in that he actually knew how to do it! I talked with Paul briefly after his presentation. I was thinking of graduate school for my masters and I decided to go to SIU that fall to study with Paul. It was a wise choice as Paul was brilliant in many ways (teaching, research, mentoring, being a role model) and I learned a huge amount from him. Paul played the  key role in my professional development and really put me on a trajectory to do well in the field. He guided me in my writing, as I was very motivated to do, but had no real writing skills at all at that point in time. He was very patient, always had positive comments, and was encouraging. I always appreciated that he took the time to mentor me, which often took the form of informal discussions. Not only did I gain valu-able teaching and research skills in working with Paul but also I came to understand the “big picture” of the field. These are not easy things to teach to someone but Paul did it gently, patiently, and with great humor. He was always willing to take time with me and to offer guidance. Paul was able to shape my  behavior in many ways such as guiding me through the literature in the field, helping me to understand how different systems interact (or should interact, but do not), and in introducing me to key people in the field. In my first project with Paul, we were working with people coming out of state institutions into the community. I asked if we could make what we were doing into a study (having no idea how to actu-ally do so). Paul was supportive and guided me (and fellow graduate student Harry Hanson) through the  process. On a personal level, Paul and his wonderful wife Barb were extremely supportive and often invited me into their home, which I greatly appreciated.Paul’s writing had a major impact on the field. He wrote about community instruction, transition and employment services, systematic instruction, person-centered planning, self-determination, and social skills instruction. Not only was Paul a talented writer, but also he was a gifted editor and a generator of  Wehman et al. 125 ideas. One evening, while at a conference, we were sitting together in a hotel room and we started discuss-ing doing a book together on transition and employment services. Paul said that it would be important to have each chapter follow the same format. He pulled out a pad of paper and quickly outlined the format of the chapters, which we ended up using in the book The Road Ahead: Transition to Adult Life for Persons with Disabilities  (Storey, Bates, & Hunter, 2002).Paul Bates’s 1981 article (with Adelle Renzaglia and Paul Wehman) “Characteristics of an Appropriate Education for the Severely and Profoundly Handicapped” in  Education and Training of the Mentally  Retarded   is one of those classic articles that shaped service delivery and research efforts and is still worth reading today. This article outlined and discussed 12 characteristics that are important for an appropriate  program for individuals with severe and profound disabilities: age appropriate curriculum, specific objec-tives, functional activities, consistent cue hierarchy, regular data collection, periodic program revision, detailed classroom schedule, instruction outside the classroom, integrated therapy, small group instruction, interactions with peers without disabilities, and family involvement. This article was selected as one of the top 13 classic contributions in the area of severe disabilities and was ranked fifth overall (Spooner, Enright, Haney, & Heller, 1993).Paul was a huge sports fan, and for an analogy, he reminds me of the great baseball player Honus Wagner. Like Wagner, Paul was one of the greatest and did everything well with no weaknesses. And like Wagner, he was respected and admired by others, worked hard, was kind to rookies and all others, encour-aged people to do well, and coached and guided others.I enjoyed Paul’s sense of humor, appreciated his caring for his family and others, respected how humble he was about his accomplishments, and I especially admired his irreverence! When I was a professor, I always tried to model myself after Paul. Perhaps the most important thing about Paul was that he brought out the best in people. Whether you were a student, a friend, a colleague, or a person with a disability, Paul made a positive difference in your life and you were a better person for having known him. Reflections by Paula Davis The first time I heard Paul speak, I was a master’s degree student in behavior modification at SIU. Paul was a new assistant professor in special education. He was a mesmerizing speaker and his research on complex social skills training was exciting and more complex than other work being done with individuals with intel-lectual disability. That alone would have drawn me to working with Paul, but the attraction was more than that. It was Paul’s passion for his work. He knew that life could be better for people with disabilities and he was determined to help other people see that. After hearing Paul speak, I sought opportunities to work with him. He was a generous mentor: generous with his time, generous with his always gentle feedback, gener-ous with opportunities. Over the next few years, Paul introduced me to Paul Wehman, Adelle Renzaglia, and Lou Brown. He gave me the chance to speak to people who were doing the most important work in the areas of functional curriculum, transition, and supported employment and supported living. Those opportu-nities led me to enter the PhD program in Special Education with Paul as my advisor. At my interview, when asked why I wanted to get a PhD, my answer was that I had seen the profound impact Paul had on his stu-dents. I could see that generations of special educators and service providers could be affected by a single individual. In other words, I wanted to be a professor like Paul. (I knew that was not an achievable goal but Paul always taught his students to aim high.)Probably the most important part of my PhD program was the far-ranging informal discussions Paul and I had. Paul’s vision of the world was full of optimism, and he believed that with the right opportunities and the right supports, people with disabilities could lead full, productive, joyful lives far richer than the ones they were living in the 1970s and 1980s. That was what drew me to working with him and yet I felt that  perhaps he was being idealistic. Was there really hope that our world could look like the one he and his col-leagues Paul and Adelle and other leaders in the field envisioned? I asked him how to reconcile a worldview that recognized and supported difference with the “real world.” His answer was simple. We have to set our goals high to move forward. We may not achieve the final outcome we want, but if we do not try, we most definitely will not make it. What a great way to answer those who might believe that Paul and his colleagues  126  Research and Practice for Persons with Severe Disabilities 44(2) were being idealistic. As I walk around my community more than 30 years later, I see people with severe disabilities working at my local grocery store, and the professional ball stadium, and other community sites and I see them living in the community not in institutions. If Paul had not dared to be “idealistic,” that would not be happening. That conversation with Paul all those years ago taught me that “idealistic” is not a dirty word but is the path forward. What a valuable life lesson.After completing my PhD, I worked in the special education department and in the Rehabilitation Institute at SIU. Paul continued to be my mentor as I started my new role as a faculty member. It was an incredible honor to be Paul’s colleague. When I retired many years later, I got rid of nearly every profes-sional book I had. There were a few exceptions. One that I kept has a bright blue cover and is entitled  Functional Living Skills for Individuals with Moderate and Severe Disabilities  (Wehman et al., 1985). I could not part with a book that had such a profound impact on my professional development and on the field of severe disabilities.One of the unexpected and wonderful pleasures of being Paul’s graduate student was getting to know him personally. He had a wicked sense of humor, a devilish laugh, an impish grin, and a glorious smile. He could see something funny in almost any situation. Another pleasure was the instant welcome, friend-ship, and support I received from his wonderful beautiful wife Barb and their children Megan, Dylan, Laurel, and Julia. The relationship I developed with Barb remains to this day and I know she still has contact with many of Paul’s other graduate students. Being Paul’s doctoral student really meant becom-ing part of his family.What is Paul’s legacy? Paul taught us to be idealistic and to hope for and work for a better world not just for those with disabilities, but for all those who are not experiencing all that life has to offer. He taught us to set our personal goals high. He taught us to approach life with optimism, a sense of humor, and gratitude for all we have. He taught us to embrace and enjoy our family and friends. He taught us what love is—just ask his family. Conclusion: In Paul’s Words If I am but a memory, let me linger a little longer If I am but a memory, let me leave you a little stronger If I am but a memory, let me inspire something newIf I am but a memory, let me bring a smile to youIf I am but a memory, let me remind you of the importance of each dayIf I am but a memory, remember how much I want to stayIf I am but a memory, remember how grateful I am for the one life I’ve been givenIf I am but a memory, know how much I appreciate sharing it with you“If I am but a memory” by Paul Bates, written December 2018 Authors’ Note All authors contributed equally to this work. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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