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AAMR F.Y.I. Talks to Robert L. Schalock

This is the first in a series of interviews with members of the American Association on Mental Retardation, representing a range of professions in the developmental disabilities field.

With nearly half a century of experience as teacher and psychologist, and over 25 books and 100 articles on topics ranging from quality of life and setting up developmental disability services in rural America to defining mental retardation and adaptive behavior, Robert Schalock is an icon in the developmental disability field. Schalock’s passion for teaching and his commitment to the field have won him numerous awards. His books have been translated into Italian, Spanish, Chinese, Japanese, and Hebrew, and he currently teaches at the University of Salamanca in Spain and Chongquing Normal University in China. How does he do it all? Stay tuned to his response in There’s always time—if you know your priorities! Yes, that’s another book on the way! AAMR F.Y.I. talks with this prolific writer and passionate advocate.

AAMR F.Y.I.: You have traveled extensively around the world and have done considerable international work and currently hold teaching positions in several countries. In your opinion, is the United States doing enough for persons with intellectual disabilities?

Schalock: The United States is the leader in the passage and implementation of public laws regarding legal and physical access to the community and other opportunities for persons with intellectual disabilities. Where we are having problems is converting these public policies into required changes at the organization and systems levels. Part of this disconnect is due to traditional ways of thinking and part due to some built-in disincentives from a funding perspective. But part is also due to how organizations have traditionally viewed themselves. Thus, although we are not there yet, organizations and systems are beginning to view themselves and their roles very differently. Organizations are becoming “bridges to the community” and thereby accessing social capital via individualized supports and fostering social supports networks. In that regard, we are also seeing a change in the service delivery system incorporating the basic philosophy that the community IS the context for a life of quality.

AAMR F.Y.I.: However, it does appear that in the United States, deinstitutionalization and an individualized, supports-oriented approach to services do not come easy. We are struggling here a bit it appears, compared to countries like Canada and Australia and some of our Scandinavian counterparts. Why?

Schalock: All countries are being challenged, and the challenges are both similar and different depending on the country and its unique circumstances. I do feel that the United States is making progress in regard to individualized funding, agencies publishing “score cards’ on the personal outcomes being experienced by their clientele/customers, and states increasingly using personal, quality of life-related outcomes for policy analysis, policy decisions, and data-based management.

AAMR F.Y.I.: What do you make of the recent Daryl Atkins death penalty controversy?

Schalock: I applaud the Supreme Court and realize the tremendous impact their decision has on the field, not only for persons with mental retardation/intellectual disabilities but also for those involved in the diagnosis of such persons. At a more personal level, in 1992 I wrote an invited response to an article in the American Journal on Mental Retardation on capital punishment and the dilemmas faced by law and mental health professionals. In that article, I argued against the death penalty for persons with mental retardation and intellectual disabilities and indicated the need for research into the basis of personal competency and our understanding of the condition. I think that our current work reflected in both the Supports Intensity Scale assessment tool developed by AAMR and the new Adaptive Behavior Assessment Instrument are major steps in responding to the need I saw in late 1991 regarding this issue.

AAMR F.Y.I.: Why is it that a diagnosis of mental retardation still remains unclear to many out there? You are a long-standing co-author of the AAMR definition and classification manual and you have done decades of work in the definition area. Why does the role of IQ remain controversial?

Schalock: Mental retardation is not a static condition, nor is it a trait that someone either has or does not have. Rather, one’s functioning is an interaction of our strengths and limitations, the opportunities we have, and the amount and effectiveness of individualized supports we receive. As we have moved to an “ecological” (person and environment) understanding and approach to persons with intellectual disabilities, it has become increasingly difficult to diagnose especially those persons who function at the higher level of intelligence. The recent reversal of the Atkins case in Maryland and the case of Rennell Price in Richard North Patterson’s best seller Conviction not only point out the impact of over-reliance among some on IQ as the defining characteristics of mental retardation, but also indicate that we still have a lot of work to do in the clarity of our description of the condition and its diagnosis. The reality is that we live in a world of shades of gray.

AAMR F.Y.I.: Your recent book on Clinical Judgment with Ruth Luckasson addresses this area of gray, doesn’t it?

Schalock: Yes. Ruth and I wrote Clinical Judgment in part to help resolve the issues just addressed regarding the over-reliance on IQ in the diagnosis of mental retardation and intellectual disability. Increasingly, clinicians are expected to make decisions about the lives and welfare of persons with mental retardation and intellectual disability in situations that are becoming more complex. As we discuss in Clinical Judgment, the community-based and self-advocacy movement present clinicians with new challenges and require decisions regarding inclusion, equity, and empowerment. Also, the service delivery system continues to change, with its focus on personalized supports, brokered services and supports, and increased demands for accountability. Further, clinicians are increasingly being asked to make decisions based on incomplete information, often because of linguistic and/or cultural diversity and restricted opportunities for thorough assessment, interviews, and observation.

Thus, we wanted to provide a set of clinical judgment strategies, guidelines, and actions that typically extend beyond their formal training. These strategies, guidelines, and actions are based on and augment research-based knowledge, professional standards, and professional ethics. We developed them—based on our own experiences throughout many years in the field—to respond to the complexity of the context within which clinicians operate today: inclusion, quality of life, individualized supports, multicultural, multi-disciplinary, and the diagnostic process which is sometimes required in less than optimal conditions.

AAMR F.Y.I.: Back to the Supports Intensity Scale (SIS) you mention above, you are a co-author of this groundbreaking assessment instrument, the first needs-based planning tool for persons with intellectual disabilities developed by AAMR. You have trained professionals in Italy and the Netherlands on SIS. How has the reception been toward SIS and why the interest abroad?

Schalock: In addition to the Netherlands and Italy, I have also been involved in training on SIS in Taiwan and Spain. The response has been very positive due to the important role that SIS plays in implementing the supports paradigm, which is universally the predominant service-delivery mechanism today throughout the world. The advantage of SIS is that it can be used at the individual, organization, and systems level. Thus, it has tremendous practically utility for program and policy personnel. It is truly exciting that “SIS is happening” worldwide!

AAMR F.Y.I.: We also know you in recent times for your seminal work on quality of life issues. We hear a lot about quality and quality of life in our field. What is the essence of our concern and what are we trying to achieve for people with intellectual disabilities?

Schalock: There are two concerns about quality of life for persons with intellectual disabilities and what we are trying to do. First, we are trying to successfully understand and apply this concept in the context of lives of persons with intellectual disabilities. There are 8 domains, we think, that make up quality of life and these are, emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights. It is the same for all people and it should be the focus and basis of policies and practices. Second, we are working on making quality of life principles be the basis for pubic policy and program practices. This includes developing a basis for intervention and supports, a framework for evaluating personal outcomes, and integrating it into professional education and training.

AAMR F.Y.I.: Why is the work on quality of life important for the field?

Schalock: The work on quality of life provides the field of disabilities with a conceptual model for designing intervention programs and individualized supports. Also, it provides a framework for evaluating quality of life-related personal outcomes for service recipients based on core domains. Organizations can also use these criteria to evaluate the effectiveness of the services provided.

AAMR F.Y.I.: How does SIS, a person-centered tool, contribute to quality of life?

Shalock: A life of quality is enhanced through the provision and receipt of individualized supports. Thus, when the basis of individualized services and supports is based on a supports assessment tool such as SIS, and when the first component of implementing a supports systems is the identification of the goals and aspirations of persons with disabilities (like SIS does), then the connection is made.

AAMR F.Y.I.: You also remarked recently that in reality, values, and not data energize people in organizations and that values driving quality of life work are more important than the resulting data and analysis. Can you explain?

Schalock: Values related to enhancing the personal well-being and quality of life of persons should be the vision that drives organizations and management teams. The major function of leadership is to instill that vision and implement the policies and practices that enhance personal outcomes. This typically involves a new way of thinking—right to left. “Right to left” thinking involves organizations asking themselves, “What needs to be in place for self-identified personal outcomes to occur?” This is quite different from the traditional “left to right” thinking that begins with goals and objectives.

AAMR F.Y.I.: What made you enter this field, by the way?

Schalock: I entered the field by accident—as most of us did. For me, it reflected the confluence of my interest in the biochemical basis of behavior and applied psychology background. More specifically, it involved a client in the Mid-Nebraska CBMR program by the name of Bill who locked himself into a closet in the group home across the street from Hastings College. The Regional Director of that program called me one day and asked, “Bob can you get Bill out of the closet? And if you can, do you want to be a program consultant to our program and work on program development and evaluation?” The answer to both was yes. In my AAMR Presidential Address, I did a study of just this question: Why do people enter the field and why do they stay. After interviewing 25 movers and shakers in the field from throughout the world the two answers were very clear: We get there by accident, and we stay due to the support we receive from colleagues and the opportunities we have to make a significant difference in peoples’ lives.

AAMR F.Y.I.: What would you say to someone today who asks, “Why should I get into this field?”

Schalock: It’s full of opportunities for personal development, positive interpersonal relations, and impacting people’s lives.

AAMR F.Y.I.: With over four decades in the field, what do you see as the biggest challenge we face today and what do you think has been our biggest achievement so far? What is your vision for the field ten years from now?

Schalock: I recently went back and checked the table of contents of the 1999 book entitled Mental Retardation in the 21st Century edited by Mike Wehmeyer and Jim Patton. I had a chapter in that book on quality of life and I was interested in what has happened since we published that work. I was impressed with the progress we have made during the last decade on many areas including, family supports, early childhood intervention and education, inclusive education, supported living and employment, positive behavior supports, assistive technology, self-determination, and self-advocacy. We have a better understanding now of etiology and psychopharmacology as well as the concepts of intelligence and adaptive behavior. We have witnessed the service delivery system move towards personally directed funding and a focus on quality of life-related personal outcomes. Also, we are increasingly becoming a flat world characterized by interconnectedness and partnerships. My vision of the next decade is to continue to progress in each of these areas—it’s a great framework for those of us currently in the field and a great incentive for those who are fortunate to also get into the field accidentally. Our challenge is make those accidents happen!

AAMR F.Y.I.: How can we make those “accidents” happen? What can an association such as AAMR do to make these happen? As you know, the “graying” of the field of intellectual disability and recruiting young professionals is a huge concern.

Schalock: Outreach, marketing, personal contacts, mentoring, and providing meaningful opportunities for younger members through committee work, board membership, and supporting student membership and services.

AAMR F.Y.I.: How do you do it all—write, travel, teach, train, and consult?

Schalock: I have a wonderful and positive supports network, I am in good health, and I am reasonable well organized. I don’t think that I am a workaholic, but I do enjoy accomplishing things. In that regard, I work AND play hard as a colleague once told me.

AAMR F.Y.I.: And last, but not the least, what can we look forward to from Bob Schalock in 2006?

Schalock: In 2006, AAMR will publish a book I have been working on with Val Bradley and Jim Gardner titled Quality Outcomes for Persons with Cognitive Disabilities: A Comprehensive Guide to Performance Enhancement. I also anticipate completing a fun book—There’s always time—if you know your priorities! In addition to the above, I will continue to work as a committee member on the new Adaptive Behavior Assessment Instrument and I am also involved in exploring a version of the Supports Intensity Scale for children. As chair of the AAMR terminology and classification committee, I am working on the 2008 edition of the definition manual. 2006 will also be an international year. I have presentations and workshops scheduled in Italy, Spain, Canada, the Netherlands, Australia, Taiwan, and mainland China. I think this schedule reflects the internationalization of AAMR.

Robert Schalock is past President of the American Association on Mental Retardation and a long-standing member of the association. Schalock lives with his wife Sue in Chewalah, Washington and enjoys fishing, gardening, “patio-ing”, reading, camping, and hiking. He can be contacted at rschalock@ultraplix.com.

To learn more about AAMR, visit www.aamr.org. To reprint this interview or excerpts from the interview, please contact annap@aamr.org.

Books by Robert Schalock

Schalock, R, L., Bradley, V.J., & Gardner, J.F. (in preparation). Quality outcomes for persons with cognitive disabilities: A comprehensive guide to performance enhancement. Washington, DC: American Association on Mental Retardation.

Schalock, R. L., & Luckasson, R. (2005). Clinical judgment. Washington, DC: American Association on Mental Retardation.

Switzky, H.N., Greenspan, G., Schalock, R. L., & Smith, J.D. (2003). What is mental retardation? Ideas for an evolving disability. Washington, DC: American Association on Mental Retardation.

With R. Luckasson et al. (2002). Mental retardation: Definition, classification and systems of support. Washington, DC: American Association on Mental Retardation.

Schalock, R. L, Baker, P., & Croser, D. (2002). Embarking on a new century: Mental retardation at the end of the 20th century. Washington, DC: American Association on Mental Retardation.

Schalock, R. L. & Verdugo, M. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.

—Schalock, R. L., & Verdugo, M. (2003). Calidad de vida. Manual para profesionales de la educacion, salud y servicios sociales. Madrid: Alianza Editorial.
—Translated into Italian (2005; Vannini Editrice)

Schalock, R. L. (2002). Out of darkness and into the light: Nebraska’s experience with mental retardation. Washington, DC: American Association on Mental Retardation.

Schalock, R.L. (2001). Outcome-based evaluation (2nd ed.). New York: Kluwer Academic/ Plenum Publishers.

Keith, K.D., & Schalock, R.L. (2000). Cross-cultural perspectives on quality of life. Washington, DC: American Association on Mental Retardation.

—Translated into Japanese (2002; Japanese League on Intellectual Disabilities)

Kiernan, W. E. and Schalock, R. L. (Eds.) (1997). Integrated employment: Current status and future directions. Washington, D.C.: American Association on Mental Retardation.

Schalock, R. L. (Ed.) (1999). Adaptive behavior and its measurement: Implications for the field of mental retardation. Washington, D.C.: American Association on Mental Retardation.

— Translated into Italian (2002)

Schalock, R. L. (Ed.) (1997). Quality of life. Volume II: Application for persons with disabilities. Washington, D.C.: American Association on Mental Retardation.

Schalock, R. L. (Ed.) (1996). Quality of life. Volume I: Conceptualization and measurement. Washington, D.C.: American Association on Mental Retardation.

Schalock, R. L. (1995). Outcome based evaluation. New York: Plenum Press.

—Translated into Mandrin (Chinese): 1997.

With Luckasson et al. (1992). Mental Retardation: Definition, classification, and systems of support. Washington, D.C.: American Association on Mental Retardation.

Schalock, R. L. and Kiernan, W. E. (1990). Habilitation planning for adults with disabilities. New York: Springer Verlag.

Schalock, R. L. (Ed.) (1990). Quality of life: Perspectives and issues. Washington, D.C.: American Association on Mental Retardation.

—Translated into Japanese (1995)

Kiernan, W. E. & Schalock, R. L. (Eds.) (1989). Economics, industry and disability: A look ahead. Baltimore: Paul H. Brookes Publishing Company.

Schalock, R. L. & Thornton, C. (1988). Program evaluation: A field guide for administrators. New York: Plenum Press.

Schalock, R. L. (1983). Services for the developmentally disabled adults: Development, implementation and evaluation. Austin: Pro ed.

Schalock, R. L. (Ed.) (1979). MR/DD services in rural America—It is time. Washington, D.C.: Institute for Comprehensive Planning.

Schalock, R. L. (Ed.) (1979). A model comprehensive service delivery system for persons with developmental disabilities. Springfield, Illinois: Governor's Planning Council on Developmental Disabilities.