Mental Retardation and Mental Health: Classification, Diagnosis, Treatment, Services PDF
Preview Mental Retardation and Mental Health: Classification, Diagnosis, Treatment, Services
Disorders of Human Learning, Behavior, and Communication Ronald L. Taylor and Les Sternberg Series Editors Jack A. Stark Frank 1. Menolascino Michael H. Albarelli Vincent C. Gray Editors Mental Retardation and Mental Health Classification, Diagnosis, Treatment, Services Springer-Verlag New York Berlin Heidelberg London Paris Tokyo Jack A. Stark and Frank J. Menolascino, Department of Psychiatry, University of Nebraska Medical Center, Omaha, Nebraska 68105-1065, USA Michael H. Albarelli, President's Committee on Mental Retardation, Washington, D.C. 20201, USA Vincent C. Gray, Association for Retarded Citizens, District of Columbia, Washington, D.C. 20011, USA Series Editors: Ronald L. Taylor and Les Sternberg, Exceptional Student Education, Florida Atlantic University, Boca Raton, Florida 33431-0991, USA Library of Congress Cataloging-in-Publication Data Mental retardation and mental health. (Disorders of human learning, behavior, and communication) Based on a National Strategies Conference on Mental Illness in the Mentally Retarded, sponsored by the President's Committee on Mental Retardation (PCMR), held in Washington, D.C. Oct. 30-Nov. 1, 1985. Includes bibliographies and index. 1. Mentally handicapped - Mental health - Congresses. I. Stark, Jack A. II. National Strategies Conference on Mental Illness in the Mentally Retarded (1985 : Washington, D.C.) III. United States. President's Committee on Mental Retardation. IV. Series. [DNLM: 1. Mental Disorders-etiology-congresses. 2. Mental Retardation complications-congresses. WM 307.M5 M549] RC451.4.M47M47 1987 616.85'88 87-16577 © 1988 by Springer-Verlag New York Inc. Sofkover reprint of the hardcover 1st edition 1988 All rights reserved. This work may not be translated or copied in whole or in part without the written permission of the publisher (Springer-Verlag, 175 Fifth Avenue, New York, New York 10010, USA), except for brief excerpts in connection with reviews or scholarly analysis. Use in connection with any form of information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed is forbidden. The use of general descriptive names, trade names, trademarks, etc. in this publication, even if the former are not especially identified, is not to be taken as a sign that such names, as understood by the Trade Marks and Merchandise Marks Act, may accordingly be used freely by anyone. While the advice and information in this book are believed to be true and accurate at the date of going to press, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Typeset by Publishers Service, Bozeman, Montana. ISBN-13: 978-1-4612-8337-9 e-ISBN-13: 978-1-4612-3758-7 DOl: 10.1007/978-1-4612-3758-7 9 8 7 6 5 4 3 2 1 Foreword In late 1985, The President's Committee on Mental Retardation (PCMR) spon sored a National Strategy Conference on Mental Retardation and Mental Health in Washington, D.C. The purpose of this conference was to bring together our nation's leadership in the fields of mental retardation and mental health in order to delineate the state of the art relative to the diagnosis, care, and treatment of citizens with mental retardation/mental illness, as well as to chart a national course for the support and integration of citizens with these challenging needs into the confluence of family and community life. The President's Committee on Mental Retardation recognized that citizens with these needs constitute one of the most underserved and, at times, forgotten segments of the population. With this in mind, the PCMR called together govern mental, professional, and parental representatives from across the nation to define the nature and extent of the problem, programs, and services that promise hope for substantive improvement in the quality of life of citizens with mental retardation/mental illness. The conference focused on several major themes: epidemiology, prevention, training, research, clinical diagnosis and treatment challenges, issues centering on the family system, community treatment-management alternatives, model service programs, and legal and legislative barriers and supports. To analyze these critical issues, the PCMR invited academic, governmental, and parental experts from across the nation for this national conference. Each of the major themes was reviewed, analyzed, and critically questioned through individual presentations, panel discussions, and audience participation. The range of dis cussion resulted in a significant amount of consensus relative to basic issues and needed change strategies. A few of the issues created more controversial debate and the stated need for further study and analysis. As such, the views expressed in these chapters are those of the authors. Although the PCMR has taken no posi tion on these works, it presents them as a contribution to the research, study, thinking, and planning required to address the major issues associated with meet ing the needs of the nation's citizens with mental retardation and mental illness. Albert L. Anderson, D.D.S. Vice-Chairman, President's Committee on Mental Retardation Preface The strength ofthis edited volume lies in its comprehensive contribution by some 50 authors representing numerous professional disciplines. One potential weak ness, however, is agreeing on and using a common set of definitions given the use of terms unique to each discipline. It becomes a truly challenging task agreeing on a set of terms when individuals from such areas as medicine, law, psychology, social work, human services, administration, and social/policy analysis come together to write (both collectively and individually) on a common topic. This semantic phenomena is particularly evident in the use of the term "dual diagnosis." When referring to the mental health aspects of persons who are men tally retarded, each discipline tends to use their own set of terms familiar to them. For example, psychologists use the term "behavioral problems" or "emotional dis orders;' lawyers and social workers use the terms "mental health aspects," and psychiatrists use "psychiatric disorders" or refer to the psychopathology and specific diagnostic issues. One contributor (Baumeister) noted that definitions and classifications may be more directly driven by political, social, and economic considerations than by scientific or professional concerns. Szymanski has cogently argued against the use of the term "dual diagnosis" as an imprecise and possibly inappropriate label (i.e., would a retarded person be viewed as "quadrally diagnosed" if they also dis played epilepsy, cerebral palsy, and a major auditory disorder). Still others point out that this term is increasingly being used to describe individuals with the "dual problem" of alcoholism and mental illness. Despite these concerns, the term "dual diagnosis" remains immensely popular in the field of mental retardation, particularly among the direct services pro viders. It serves as a label that quickly describes who they serve and what their services are about. Indeed, the National Association for the Dually Diagnosed (NADD) now has some 2,000( +) members injust the few years since its found ing. The founders of this national organization, Menolascino and Fletcher, feel that the term "dual diagnosis" serves to draw national attention to the issues con cerning a special group of mentally retarded individuals who have the coexis tence of mental illness/mental retardation. The rationale for the usage ofthe term is to bring attention to both the complexity of the needs and multiplicity of viii Preface services necessary for this underserved population. Hopefully, this explanation will help the reader better understand the terminology issues as they progress through the various sections written by the top professionals in their respective disciplines on this common topic. Lastly, the issue of style requires a brief comment. The contributors to this book are sensitive about the possible pejorative use of labels - having served as advocates on behalf of the rights of persons with mental retardation for a good portion of our professional careers. The linguistic use of "persons who are men tally retarded" is most appropriate and was used as frequently as possible. However, for readability and space considerations, the use of "mentally ill/men tally retarded" or "mentally retarded person;' "citizen;' or "individual" was some times substituted. This literary style is not intended to deprecate this population of fellow citizens whom we are proud to serve. Acknowledgments In planning the national conference and the subsequent publication of this book, the President's Committee on Mental Retardation established an Interagency Planning Group comprised of representatives from five other federal agencies. Together, these six federal agencies and assembled professionals from across several disciplines were brought together to identify research needs and strate gies necessary for the delivery of effective mental health services to persons with mental retardation. The six sponsoring agencies were: Office of Special Education and Rehabilitative Services, U.S. Department of Education National Institute of Child Health and Human Development, National Institute of Health, Department of Health and Human Services National Institute of Mental Health, Alcohol, Drug Abuse and Mental Health Administration, Department of Health and Human Services Assistant Secretary for Planning and Evaluation, Department of Health and Human Services Administration on Developmental Disabilities, Office of Human Development Services, Department of Health and Human Services President's Committee on Mental Retardation, Office of Human Development Services, Department of Health and Human Services The President's Committee on Mental Retardation appreciates the opportunity to present this book to the field of mental retardation and mental health. Listed on the following page are members of the Committee and staff whose efforts helped to bring about this final product. x Acknowledgments Members of PCMR The Honorable Otis R. Bowen, M.D. Albert L. Anderson, D.D.S. Chairperson Vice Chairperson Lucia L. Abell William Kerby Hummer, M.D. Martin S. Appel Roger Stanley Johnson, M.D. James Bopp, Jr. Richard 1. Kogan* Lee A. Christoferson, M.D. D. Beth Macy* Dorothy Corbin Clark, R.N. 1. Alfred Rider, M.D., Ph.D. Margaret Ann Depaoli Fred 1. Rose* Lois Eargle U. Yun Ryo, M.D., Ph.D. Thomas 1. Farrell* Dwight Schuster, M.D. Vincent C. Gray* Anne C. Seggerman Jean G. Gumerson Marguerite T. Shine* Matthew 1. Guglielmo Virginia 1. Thornburgh Madeline B. Harwood Martin Ulan Elsie D. Helsel, Ph.D.* Ruth A. Warson, R.N. PCMR Staff Susan Gleeson, R.N., M.S.N. Ashot Mnatzakanian Executive Director Essie Norkin (deceased May 1987) Jim F. Young Laverdia T. Roach Deputy Executive Director Rosa Singletary Janet T. Bolt Bena Smith Nancy O. Borders David Touch George Bouthilet, Ph.D. Terry Visek *Term expired in June 1986 Special appreciation is also extended to Dr. Jean K. Elder, Former Acting Assistant Secretary, Office of Human Development Services, Jim F. Young, Deputy Executive Director, PCMR, Vincent C. Gray, former PCMR member, and Michael Albarelli, former PCMR staff member, with special thanks to Susan Gleeson, R.N., M.S.N., Executive Director, PCMR, Dr. Frank Menolascino, and Judy Moore for their invaluable contributions and support to this project. Recognition is due to Vicki Morrison, Tammi Goldsbury, and Earl Faulkner for their assistance in the preparation of this manuscript. The Committee is thoroughly committed to identifying and addressing those dynamics that weaken rather than strengthen the emotional fiber of families with a member who has mental retardation. When a family is strong, so too is its abil ity to cope with unusual and unexpected situations. Executive Summary The editors present this executive summary as a prelude to the book to provide the reader with a synopsis of the major tenets of each section of this comprehen sive text. This encapsulated summary is intended both as a guide to the book and as a section that can be reread from time to time in one's efforts to better under stand and care for this group of individuals. Epidemiology There is no doubt as to the tremendous human needs and challenges presented by persons with the diagnosis of both mental retardation and mental illness. Although there is some question as to the precise incidence rate of mental illness in the mentally retarded, it was unanimously agreed that the incidence rate is dra matically higher than in the nonretarded population and that there are psychiatric syndromes that are unique to the mentally retarded. A number of panelists cited studies of mental illness in the mentally retarded that encompassed the entire spectrum of psychiatric diagnoses. The past studies concerning the incidence and prevalence of mental retardation are in need of current replication. More recent data are needed so as to study fur ther the special subpopulation of the mentally ill/mentally retarded. It is clearly known that neurological and major language disorders place persons with mental retardation in an at-risk group to develop an allied mental illness. The current state of key research developments in this topical area was also reviewed by a number of the contributors. The focus is clearly on the psychobiological and behavioral mechanisms that interrupt and/or interfere with the appropriate modulation of central nervous system functions. The recent availability of highly sophisticated laboratory technology now permits the direct study of human behavior that, until recently, could only be conjectured. Promising areas of current and future research on this topic are clearly presented and reviewed in this book. Further clarification of the epidemiology of mental illness in persons with mental retardation and of the mechanisms by which they are produced holds XII Executive Summary great promise for prevention (e.g., techniques for actively decreasing the mental health "at-risk" status of retarded citizens via special parental supports and psy choeducational approaches). Diagnostic Issues In this section, special attention is focused on the diagnostic issues related to mental illness in the mentally retarded. It is clear that psychiatric diagnoses are relatively easy to make in the mildly retarded, but diagnostic formulation becomes much more of a challenge in the more severely retarded owing to the communication and cognitive problems related to this level of functioning. This diagnostic formulation challenge was repeatedly cited in relation to the entire range of psychiatric disorders. For example, the diagnosis of depression in a mildly retarded person is a rather straightforward process similar to that of depression in the nonretarded. However, such a diagnosis in the severely retarded individual requires significantly more astute sensitivity and skills on the part of the mental health practitioner. The same holds true for the full spectrum of diag noses of mental illness in persons at all levels of mental retardation. A much-debated issue is the common practice of attributing mental illness to mere behavior problems and the concurrent problem of dealing with observable behaviors alone, rather than underlying mental illness. Conference participants underscored the need for appropriate diagnoses as a prelude to adequate treatment. Emphasis was also placed on the range of other allied developmental and medi cal needs (e.g., seizures) that make the diagnosis and treatment of mental illness in the mentally retarded more difficult. Many persons with mental retardation have other needs that compound the diagnostic and treatment challenges. Some of these are related to allied disabilities such as seizures, communication deficits, and developmental deficits. Others are related to environmental deprivation and societal prejudice. Conference participants emphasized the need to develop diag nostic pressures to treat the whole person. Another major diagnostic issue was the fact that some behavioral patterns observed in the mentally retarded appear to be unique. Sometimes there is no symptomatological equivalent of these behavioral patterns in the nonretarded population. For example, much attention was given to the phenomenon of persis tent and oftentimes entrenched patterns of self-injurious behavior seen in more severely retarded persons. Some panelists believed that this phenomenon was the result of years of environmental deprivation as often seen in substandard institu tional settings. Others believed that these behavioral patterns were due to biolog ical or metabolic disorders such as Lesch-Nyhan syndrome, Cornelia de Lange's syndrome, and phenylketonuria. Some panelists focused on the learned nature of such self-destructive behaviors, and still others cited the possible existence of unique psychiatric disorders that are not yet well researched and defined. It became evident that all these etiological factors might playa role in such unique behavioral patterns and that, indeed, perhaps new psychiatric syndromes need to be defined.
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