Table Of ContentDisorders 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.
