,!j$JRGEON
GENERAL
WORKSHOP ON
$ELF-HELP
AND
PUBLIC HEALTH

Los Angeles, California
September 20.22. 1987

U.S DEPARTMENT OF HEALTH 6 HUMAN SERVCES
PU~IK: twm ~etv~e
Health Reswrces and Services Admikbatmn
Bureau of Malemal and CM Heal& and Resarce -enI


I believe in self-help as an effective way of dealing
with problems, stress, hardhip, and pain . . . Mend-
ing people, curing them, is no longer enough: it 15 only
part of the total health care that most people require.

C. Everett Koop, M.D., Sc.D.
Surgeon General, U.S. Public Health Service

224250 - 88 - I

. . .
ill


ACKNOWLEDGEMENTS

The Surgeon General's Workshop on Self-Help and Public Health was supported
by grants from the following organizations:
          The Office of Mater& and ChiId Health
           Bureau of Maternal and Child Health
            and Resources Development

Health Resources and services Administration
      U.S. Public Health Service
U.S. Department of Health and Human Services
The W. Clement and Jessie V. Stone Foundation
The California State Department of Mental Health
      The Exxon Corporation
        GTE of California

Kaiser Permanente of Southern California

The workshop was conducted under the direction of Heddy Hubbard, R.N., M.P.H.,
Office of Maternal and Child Health, U.S. Public Health Service. Mark Mayeda of
the California Self-Help Center was chairman of the planning committee and modera-
tor of the workshop.

Overall workshop coordination was by Marilyn Ruiz and Annette Nussbaum of the
Illinois Self-Help Center. Site coordination at the University of California, Los Angeles,
was directed by Carol Eisman and Nerissa Leonardo of the California Self-Help Center.
This report was prepared by Peter L. P&r&is, Ph.D., M.P.H., Life Sciences Editorial
Service, Annapolis, Maryland.

V


-~~ ~~

        MEMBERS OF THE WORKSHOP
          STEERING COMMITTEE

Faye G. AbdelIah, R.N., Ed.D., D.Sc.
Deputy Surgeon General
U.S. Public Health Service

Heddy D. Hubbard, R.N., M.P.H.
Bureau of Maternal
and Child Health
and Resources Development
U.S. Public Health Service

Mark M. Mayeda
California Self-Help Center

Daryl H. Isenberg, Ph.D.
Illinois Self-Help Center
Frances Jemmott Dory
New York City Self-Help Clearinghouse
Barbara E. Giloth
American Hospital Association
Ronald C. Brand
Wilder Mutual Help Resource Center

vi


      MEMBERSOFTHE
WORKSHOP PLANNING COMMllTEE

Faye G. AbdeIIah
R.N., Ed.D., D.Sc.
Deputy Surgeon General
Chief Nurse Officer
U.S. Public Health Service
Parklawn Building, Room 18-67
5600 Fishers Lane
RockviIle, MD 20857

John Ahegrante, Ph.D.
Department of Heahh Education
Teachers College
Columbia University
525 West 120th Street
New York, NY 10027

Thomasina J. Borkman, Ph.D.
Associate Professor
George Mason University
Fairfax, VA 22030

Ronald C. Brand
Project Coordinator
Consuhant
Minnesota Mutual Help
Resource Center
Wilder Foundation
c/o Community Care Unit
919 Lafond Avenue
St. Paul, MN 55105

Maree G. Bullock
Executive Director
W. Clement and
Jessie V. Stone Foundation
111 E. Wacker Drive, Suite 510
Chicago, IL 60601

Fran= Jemmott-Dory
Executive Director
New York City Self-Help
clearinghouse, Inc.
1012 8th Avenue
Brooklyn, NY 11215

Jean K. Elder, Ph.D.
Assistant Secretary for
Human Development Services
U.S. Department of Health and
Human services
Room 309F
200 Independence Avenue S. W.
Washington, DC 20201

Barbara E. Giloth
Manager
Patient Education
American Hospital Association
840 North Lake Shore Drive
Chicago, IL 60611

Hannah L. Hedrick, Ph.D.
Director
Information Analysis and Publications
Division of Alhed Health
American Medical Association
535 North Dearborn Street
cbicago, IL 60610

Janet Heimich
American Nurses Association
1101 14th street NW
Washington, DC 20201

vii


Mary Jean Houde
Manager
National Community Relations
Sears Roebuck and Co.
Sears Tower 40-08
Chicago, IL 60684

Heddy D. Hubbard, R.N., M.P.H.
Program Analyst
Division of Maternal and
Child Health
U.S. Public Health Service
ParkIawn Building, Room 6-40
5600 Fishers Lane
Rockville, MD 20857

Vince Hutchins, M.D.
Maternal and Child Health Division
Bureau of Health Care Delivery
and Assistance
U.S. Public Health Service
Parklawn Building, Room 6-05
5600 Fishers Lane
Rockville, MD 20857

Daryl H. Isenberg, Ph.D.
Executive Director
The Self-Help Center
1600 Dodge Avenue, Suite S-122 I
Evanston, IL 60201

Gini Laurie
Founder and Chairman
International Polio Network
4502 Maryland Avenue
St. Louis, MO 63108
Robert F. Lepp
Program Director
Psychosocial Services
Courage Center
3915 Golden Valley Road
Golden Valley, MN 55422
Rita A. McGaughey
Director of External Affairs
National Easter Seal Society
2023 W. Ogden Avenue
Chicago, IL 60612

Carlos J.M. Martini, M.D.
Vice-President
Medical Education
American Medical Association
535 North Dearborn Street
Chicago, IL 60610

Mark M. Mayeda
Deputy Director
California Self-Help Center
Psychology Department
University of California
405 Hilgard Avenue
Los Angeles, CA 90024

Leonore MilIer
President
SHARE, Inc.
68-37 Yellowstone Boulevard
Forest His, NY 11375

Gladys W. Neu
Widowed Persons Services
American Association of
Retired Persons
1313 Casa Verde
Corpus C&i, TX 78411

Charles E. Roppel
Chief
Office of Prevention
California Department of
Mental He&h
2340 Irving Street, Suite 108
San Francisco, CA 94122

S. Denise Rouse
Member, Board of Directors
National Black Women's
Health Project
Department of Health and
Human Services
ParkIawn Building, Room 7A-30
5600 Fishers Lane
RockvilIe, MD 20857

. . .
Vlll


Paul J. Scriffignano
Executive Director
International Association
of Laryngectomees
49 Pleasant Avenue
West Caldwell, NY 07006

Judith F. Sultan
President
Valley Parents Support Group
5641 Tobias Avenue
Van Nuys, CA 91411

Helen G. Teisher
Member, Board of Directors
National Alliance of the Mentally Ill
5820 Yorkshire Avenue
La Mesa, CA 92042

Laura P. Zeitlin
Twelve Step Program
2214 Churchill Lane
Highland Park, IL 60035

ix


WORKSHOP AGENDA

Opening Plenary Session

Presiding:

Heddy Hubbard, Workshop Project Officer,
U.S. Public Health Service
Greetings:

Mark Mayeda, Chairman and Workshop Moderator,
California Self-Help Center
Jeanne Bradner, Director of the IIlinois
Governor's Office of Voluntary Action
Clifford L. Allenby, Secretary of the California Health and Welfare Agency
Introduction of the Surgeon General
Faye G. Abdellah, Deputy Surgeon General of the U.S. Public Health Service
Keynote Address

C. Everett Koop, M.D., D.&z., Surgeon General of the U.S. Public Health
Service

Panel Presentation

Frances J. Dory, Moderator, New York City Self-Help Clearinghouse
Panel Members:

Leonore Miller, President of SHARE, Inc.
Edward J. Madara, Director of the Self-Help Clearinghouse of St. Clares-
Riverside Medical Center

S. Denise Rouse, Member of the Board of Directors of the National Black
Women's Health Project
Irving K. ZoIa, Professor of Sociology, Brandeis University

X


CONTENTS

Introduction

Self-Help and Health
Self-Help and Public Health: Steps Toward Partnership
Chapter I

Organization of the Surgeon General's Workshop on Self-Help
and Public Health

Chapter II

Welcome and Charge to the Participants
C. Everett Koop, M.D.
Surgeon General of the U.S. Public Health Service
Remarks of the Honorable James R. Thompson
Governor bf Illinois
Remarks of the Honorable George Deukmajian
Governor of California
Welcoming Address by the Workshop Moderator
Mark Mayeda

California Self-Help Center
Who Was Invited Here-and Why
Frances J. Dory

Selection Subcommittee Member
What Health Professionals Can Learn from Breast Cancer Patients
Leonore Miller

President of SHARE, Inc.
The Role of Self-Help Clearinghouses
Edward Madara
Director, The Self-Help Clearinghouse
St. Clares-Riverside Medical Center
Self-Help for Health Professionals
S. Denise Rouse
National Black Women's Health Project
The Politics of Self-Help
Irving K. Zola
Professor of Sociology
Brandeis University

xi

1
2
4

10

11

12

13

15

18

22

25


Chapter III

Overview of the Workshop Process
The Modified Delphi Technique
Small-Group Deliberations
Chapter IV

Recommendations to the Surgeon General
Chapter V

The Surgeon General's Response
Closing Remarks
Appendix A

Background Readings
Appendix B

Suggested Strategies for Implementing Workshop Recommendations
Appendix C

Participants in the Surgeon General's Workshop on
Self-Help and Public Health

28
28
28

30

33

38

39

41

49

xii


THE SURGEON GENERAL'S WORKSHOP ON
  SELF-HELP AND PUBLIC HEALTH

University of Califmia
  Los Angeles
September 2@22, 1987

INTRODUtXION

Emotional support in times of trouble
is a basic need, and human beings have
traditionally received it from family and
community. But there have been pro-
found changes in the nature of family and
community life in our times that have
made those sources less available or less
reliable for many people. For example,
community life can be practically impos-
sible in a society as highly mobile and
fragmented as ours. Social changes affect-
ing families and communities, together
with the fact that there have always been
some problems that simply cannot be
shared with either family or the broader
community, can create devastating feel-
ings of isolation and hopelessness for peo-
ple who are ill or in distress.

Many health and other personal prob-
lems have no easy remedies, and for some
people the problems are lifelong. Increas-
ingly, however, people in need of emo-
tional support for such problems are fmd-
ing it in groups that are dedicated to
helping people help themselves. For liter-
ally millions of people, these groups,
called self-help or mutual help groups, are
providing an effective and rewarding
alternative to coping with serious
problems all alone. The essence of these
groups is that their members help each
other cope with or overcome a health or
other problem that they all share.

Thousands of such groups have sprung
up in communities across the country in
recent years, although the history of the
self-help movement spans centuries. These

groups deal with a vast range of health
and other human problems, such as alco-
holism, genetic disorders, chronic disabil-
ities, emotional disorders, and bereave-
ment. Indeed, such groups are so
numerous, and they address such a wide
range of human problems, that numer-
ous self-help information clearinghouses
have sprung up across the country to keep
track of them all, so people needing help
can be referred appropriately. These
clearinghouses are also instrumental in
helping new self-help groups get started,
and new ones are starting all the time.

It has been estimated that a half mil-
lion self-help groups are serving some 10
million people in the United States. There
are probably several valid ways to clas-
sify them. The National Institute of Men-
tal Health has identified three general
kinds of self-help groups: groups for peo-
ple with a physical or mental illness, with
groups in existence for practically every
disorder; recovery groups for people with
problems such as alcoholism, drug addic-
tion, or other compulsions or addictions;
and groups for certain minorities such as
the handicapped. Many of these groups
serve not only their primary members but
also their families.

Although emotional support is the cen-
tral purpose of most self-help groups,
many of them also engage in advocacy of
changes in policies, laws, attitudes, and
practices in the broader communities. It
is not uncommon, for example, for
groups to work for changes in profes-


sional health care practices, because their
members perceive from personal
experience that the formal health care sys-
tem sometimes has serious shortcomings
in dealing with patients and their
problems.

Despite their diversity, the basic pur-
poses of all self-help groups are the same:
to provide mutual aid and emotional sup
port for people who share the same
predicament. People who have struggled
long and alone to cope with a personal
problem or tragedy feel great relief and
security when they discover others who
know exactly what they are experiencing
because they are in the same situation. In
this accepting environment, where there
is empathy, people can express their feel-
ings and know that they are understood,
and through mutual help the members
can develop more effective ways to cope
with the problem they all share. What
people discover in self-help groups is that
when they help others they help them-
selves, and that can be a happy discov-
ery indeed.

Self-help groups share some other fea-
tures as well. One of the most typical fea-
tures of self-help groups is a strong desire
to be autonomous. Although many suc-
cessful self-help groups have been initiated
by physicians or other health professional
who brought people with common
problems together, they usually have
developed spontaneously out of needs
perceived by people in their own lives. In
either case, a key element of success is
that members see the group as belonging
to them, although most self-helpers wel-
come recognition, support, and coopera-
tion from professionals. The relationship
between self-helpers and formal systems
for health care delivery can sometimes be
strained, however. Many self-helpers con-
sider the established health care systems
to be insensitive, resistant to needed

2

change, and unappreciative of the unique
perspectives and contributions that can be
provided by individuals who have
experiential knowledge of an illness or
other condition.

Self-Help and Health

A growing body of research is demon-
strating that social support helps healthy
people stay well, speeds the recovery of
people who are ill, and improves the qual-
ity of life for those for whom full recov-
ery is not possible. The following are
examples from recent clinical literature:
o Only 20 percent of patients with em-
physema,  chronic bronchitis, or
asthma who participated in a self-help
group needed hospitalization over a 6-
month period, compared to 64 percent
of controls. The self-help participants
who did have to be hospitalized spent
an average of 0.8 day in the hospital,
compared to an average of 5 days for
controls. (Jensen, P.S. Risk, protective
factors, and supportive interventions in
chronic airway obstruction. Archives
of General Psycho~ogv 40(11), 1983.)
o In a randomized prospective study,
women with metastatic breast cancer
who participated in a weekly support
group had significantly lower mood
disturbances, fewer maladaptive cop-
ing responses, and less phobia than
similar patients who did not participate
in a support group. (Spiegel, D.;
Bloom, J.R.; and Yalom, I. Group
support for patients with metastatic
cancer: A ramdomized prospective
outcome study. Archives of General
PsychMy 38(5), 1981.

o A randomized study of men and
women with rheumatoid arthritis
found that patients who participated in
a mutual support group showed
greater improvement in joint tender-
ness than a similar group of nonpar-


.

ticipants. The 105 patients in this study
were randomly assigned to one of three
conditions:  a stress management
group, a mutual support group, or a
no-treatment group. The stress
management and support groups,
which were facilitated by a psycholo-
gist, met for 10 weekly sessions.
(Sheam, M.A. and Fireman, B.H.
Stress management and mutual sup
port groups in rheumatoid arthritis.
American Journal of Medicine 78(5),
1985.)
Forty patients discharged from a State
psychiatric hospital who were ran-
domly assigned to a Community Net-
work Development Program (a type of
self-help group) had half the
rehospitalization rate of 40 similar
patients who did not participate in such
a program. They also required one-
third as many patient days of
rehospitalization (7 days versus 25
days) and fewer contacts with comrnu-
nity mental health services agencies (48
percent versus 74 percent). (Gordon,
R.E.; Edmunson, E.; and Bedell, J.
Reducing hospitalization of state men-
tal patients: Peer management and
support. In: A. Jeger and R. Slotnick
(eds.) Community Mental He&h. New
York: Plenum Press, 1982.)

In addition to studies aimed at objec-
tive measurement of outcomes, there have
been a number of surveys of participants
in a variety of self-help groups organized
around physical, mental, and social health
problems. Response rates are typically
very high, and the majority of respon-
dents report that their participation in
such groups has brought them significant
benefits.

Although it may seem paradoxical,
modem advances in medical knowledge
and technology are making self-help
groups increasingly important. There is
no real paradox, however:

o People with disabling conditions that
would have been quickly fatal a gener-
ation ago can now live for many years.
As a result, more people face the
problem of learning how to live suc-
cessfully and happily despite chronic
disability. Many are learning how in
self-help groups.

Research shows that a growing propor-
tion of health care outlays in our aging
population are for diseases related to
lifestyle, such as excessive drinking,
smoking, and overeating. There are,
however, no magic elixirs to change
someone's lifestyle. Those changes have
to come from the individual, but they
are often extremely difficult, if not
impossible, to accomplish alone. For
this reason, health professionals have
become very interested in developing
closer relationships and referral pat-
terns with self-help groups devoted to
helping their members conquer health-
threatening habits or chemical depen-
dencies.

Though advances in medicine in recent
decades have been spectacular-organ
transplantation, for example-their
cost is also spectacular, and they clearly
cannot be regarded as general tools to
preserve and improve the public health.
Health care financing systems are under
great strain and are very much involved
in efforts to contain costs by stressing
prevention rather than cure. Self-help
groups focused on healthy living are
being viewed increasingly by employers,
health plan administrators, and public
health officials as an attractive altema-
tive to the costly formal medical inter-
ventions that must be made after dis-
ease strikes.

These and related trends in public
health suggest that the formal health care
system, which is traditionally oriented to

3


treating sick people case by case, cannot
by itself be expected to preserve the health
and well-being of our people. There is
growing recognition that informal care
networks perform unique and valuable
health services that can have great impact
on public and personal health and well-
being. Obviously, self-help groups cannot
be substitutes for surgery, pharmaceuti-
cals, and other medical interventions. But
their approaches can give a human
dimension to health care, help people
assume greater responsibility for their
own health, and simultaneously address
the needs of body, mind, and spirit.

Self-Help and Public Health:
Steps Toward Partnership

In May 1986, representatives of self-
help clearinghouses, the American Medi-
cal Association, and the American Hospi-
tal Association met with C. Everett Koop,
M.D., Surgeon General of the U.S. Pub-
lic Health Service, to discuss possible ways
in which self-help groups and health care
professionals could work together for the
benefit of public health.

Dr. Koop expressed great interest be-
cause he has long believed that self-help
groups can play an extremely useful role
in preserving and restoring health, and
that the self-help movement ought to be
regarded as a valuable partner of the for-
mal health care system. In his long career
as a pediatric surgeon he had frequently
witnessed, long before the phrase "self-
help group" became current, the benefits
to patients and their families that resulted
when they were brought together with
others in the same situation.

Periodically, the Surgeon General con-
venes workshops to address public her&h
issues and solicit recommendations from
participants regarding necessary actions.
At the May 1986 meeting Dr. Koop
offered to sponsor a Surgeon General's

4

Workshop on Self-Help and Public
Health. After consultation with consti-.
tuencies and further meetings with Dr.
Koop and representatives from the U.S.
Public Health Service, the self-help advo-
cates formed a steering committee to
begin the planning process for the work-
shop, including the selection of a planning
committee.

The steering committee included rep
resentatives from the American Medical
Association, American Hospital Associ-
ation, U.S. Public Health Service, and the
International Network of Mutual Support
Centers. Actual preparations for the
workshop were handled by the 25-mem-
ber planning committee, which included
representatives from a broad range of
self-help organizations. Subcommittees
addressed selection of participants,
resources development, issues develop
ment, and postworkshop activities. Seed
money for the workshop came from
grants from the W. Clement and Jesse V.
Stone Foundation. The California De-
partment of Mental Health, the Exxon
Corporation, and the U.S. Public Health
Service contributed funds for later
activities.

The workshop, held in Los Angeles on
September uF22, brought together nearly
200 leaders in the self-help movement to
develop specific recommendations aimed
at expanding and strengthening the role
of self-help groups in protecting and
enhancing the Nation's health.

The workshop participants, selected to
represent a broad cross-section of self-
helpers, academicians, professional health
caregivers, and public policymakers, deve-
loped and presented 16 recommendations
to the Surgeon General for creating a
partnership between the self-help move-
ment and the formal health care system.

This document is the product of their
deliberations.


ORGANZ4TION OF THE SURGEON GENERAL'S
    WORKSHOP ON SELF-HELP AND
         PUBLIC HEALTH

Organization of the Surgeon General's
Workshop on Self-Help and Public
Health was guided by a planning comrnit-
tee whose membership represented a
broad range of self-help and public health
activities. The membership included
representatives of national and local self-
help groups and clearinghouses, health
professionals, and researchers.
In planning the workshop, the Com-
mittee operated under the following
assumptions:

1. As a Surgeon General's workshop on
self-help and public health, the
primary focus would be on self-help
groups as an informal support system
whose activities are relevant to public
health. Self-help groups dealing
explicitly with physical and mental
health concerns would therefore be the
primary topic of discussion, although
it was recognized that many other
kinds of informal support systems
dealing with issues such as housing,
poverty, and unemployment can also
have important impacts on public
health.

2. For the purposes of the workshop,
self-help groups would be defined as
self-governing groups whose members
share a common health concern and
give each other emotional support and
material aid, charge either no fee or
only a small fee for membership, and
place high value on experiential
knowledge in the belief that it provides

3.

4.

5.

6.

7.

5

special understanding of a situation. In
addition to providing mutual support
for their members, such groups may
also be involved in information, edu-
cation, material aid, and social
advocacy in their communities.
It was recognized that, although self-
help groups share many characteris-
tics, they also differ from each other
in important ways.

Convening the workshop would not
imply that self-help groups are in need
of enhancement by professionals,
governments, or any other outside
PartYe

It was recognized that the informal
support systems and the formal health
care delivery system provide somewhat
overlapping functions, but that they
have significantly different purposes
and neither can substitute for the
other.

For the purposes of the workshop,
partnership would be defined not in
the narrow and legalistic contractual
sense, but rather as a relationship that
is mutually beneficial to people (or
organizations) who are interdependent
whether they realize it or not. Partner-
ship in this sense can include relation-
ships in which there is friction and
challenge as well those where things go
smoothly.

Exchange of information among self-
help groups, health care professionals,


and health care systems was deemed
desirable and worthy of encourage-
ment .

The Issue Development Subcommittee,
one of four working groups of the plan-
ning committee, refined the issues to be
discussed at the workshop and collected
background information (see Appendix
A) to provide a common knowledge base
for ail participants. Commissioned data
collection activities included key infor-
mant interviews, surveys of callers to self-
help clearinghouses, and surveys of pro-
viders in hospitals and health maintenance
organizations. Based on the results of the
data collection, it was recommended that
all eight workshop groups address these
two broad questions:

1.

2.

How can public health be improved
through partnership between self-
helpers and the health care delivery
system?

How can these partnerships be
achieved without compromising the
essential nature of self-help?

The range of issues addressed at the
Surgeon General's Workshop is reflected
in a set of specific questions sent to par-
ticipants before the workshop to stimu-
late their thinking about the self-
help/public health partnership idea:
o How can communication between self-
help groups and health care profes-
sionals be increased and improved?
What are the advantages and disadvan-
tages to the self-help movement in hav-
ing stronger relationships with the
health care professions? Can such rela-
tionships be established without violat-
ing the traditions and essential charac-
teristics of self-help groups? What are
the proper roles of clearinghouses,
governments, health care professionals,
and researchers in relation to the self-
help movement? What things help or

hinder the flow of information among
self-help groups and between those
groups and professionals?

How should consumers and service
providers learn about and gain access
to self-help groups? Should self-help
organizations develop a massive infor-
mal communication system to dis-
seminate health information? How can
clearinghouses for referral and self-help
group development services be
financed?

How can self-help enhance the effec-
tiveness of the long-term care delivery
system? How do self-help approaches
affect the course of chronic illness,
recovery, and care utilization? What
are the positive and negative outcomes
of self-help groups?

How can self-help become a compo-
nent of a coordinated health care plan?
Will pressure for cost containment
compromise the quality of care by let-
ting referrals to self-help groups take
the place of referrals to needed profes-
sional care? Is there a danger that
policymakers will use the existence of
self-help groups as an excuse to recom-
mend cuts in vital health care services
and entitlement programs?

What factors help self-help groups
develop, and what are the effects of
external resources on this process?
What kind of training is needed for
self-help group leaders and facilitators
and for professional service providers?
What kind of education for the general
public? What research and demonstra-
tion programs should be undertaken?

Questions like these were very much on
the minds of the participants during the
two-and-a-half-day workshop, and their
answers to them were reflected in their
recommendations to the Surgeon
General.

6


CHAPTER II:

             OPENING PLENARY SESSION
          Sunday, September 20, 1987
WELCOME AND CHARGE TO THE PARTICIPANTS
        C. Everett Koop, M.D.
         Surgeon General
      United States Public Health Service

I am very pleased to welcome all of you
to this Surgeon General's Workshop on
Self-Help and Public Health, and I am
especially happy to see such a large group
of participants representing self-help and
mutual help organizations from all over
the country.

I know that for many of you, coming
to this workshop required a considerable
sacrifice of money, time, and energy, but
I hope your experiences here will repay
you a hundred times over. You won't get
your money back, I'm afraid, and the
time of course is gone forever, though I'm
sure the calories you burn here will all be
restored. But what I hope you will get
from this workshop is the opportunity to
renew old friendships with your col-
leagues and make new friendships with
others who, like you, labor long and
hard, a day at a time, to help themselves
at the same time they help others.

I had a conversation a while ago with
several colleagues in the health field back
in Washington. We were talking about
the self-help movement and the desirabil-
ity of having a workshop to explore its
potential to contribute to public health.
One of them asked, somewhat skeptically,
"Dr. Koop, do you think it's wise to
invest the power and prestige of your
office in the self-help movement?" My
answer was an emphatic "Yes," because
I believe self-help is an effective way of
dealing with problems, stress, hardship,
and pain. So, I have called all of you
together here to spend the next 2 days dis-

cussing how self-help and public health
can work more closely together toward
the common goal of personal well-being.
By the final session I hope we will be able
to shed some light on the potential con-
tribution of government to the self-help
movement, especially how the Public
Health Service can acknowledge more
fully the benefits of self-help in health
care delivery.

We in government need your contribu-
tions to help us find the answers to two
fundamental questions: What do we want
to do? What do we have to know in order
to do it well? Now those questions sound
simple, but don't be fooled. Getting
answers to them is a major challenge for
health policymakers, health care pro-
viders, and everyone else involved in
maintaining and improving the health of
Americans.

What do we want to do? When I was
in medical school, back in the Dark Ages,
I learned how to diagnose and treat
patients with a variety of disease condi-
tions. What we wanted to do was cure
people, repair their hurt and broken bod-
ies, and sometimes their broken minds.
Today, that desire alone is not a sufficient
basis for a health care system. Mending
people, curing them, is no longer enough.
It is only part of the total health care that
most people require.

For one thing, people who go to doc-
tors these days do not present, as much
as they used to, a clear-cut disease that
calls for a highly specific treatment.

7


According to a recent national survey of
physicians' practices, the main reason
people go to a doctor is for what has been
called "a condition without a sickness."
The patient does have trouble of some
kind, of course, but it does not fit the
traditional disease categories. Medical
schools and other health profession
schools have not quite caught up with the
self-help and mutual help groups who
have long recognized this reality. I believe
~that recognition is a key aspect of the
valuable work these groups do.

The anguished parents of a mentally or
physically impaired child, the sorrowful
child who grows up in an alcoholic home,
the person grieving over the loss of a
spouse, the person disfigured in an auto
accident or a fire, the infertile couple-
when people like these seek help, are they
really sick? No, they are not. But they do
need help.

These conditions without sickness by
no means constitute the total health pic-
ture of Americans, but they are a very sig-
nificant part of it. Generally, most Ameri-
cans are in good to excellent health by all
the routine technical standards. Life
expectancy is at a new record high. The
average child born today can look for-
ward to living 74.5 years, and even peo-
ple my age are doing better on life expec-
tancy. You and I can expect a few more
years of life than our parents could at our
age, and we can expect several more years
than our grandparents could. I think these
particular figures are more important to
most families than the latest Dow Jones
average.

Here is some more good news. The
age-adjusted death rate for stroke, the
third leading cause of death in this coun-
try, continua to decline. Today, the mor-
tality rate for stroke is half what it was
only 15 years ago, and it appears to be
`falling by about 5 percent a year. The

8

same decline is occuning in heart disease,
the leading cause of death in our coun-
try, although the change is not as dra-
matic.

Figures like these tell us that we are
making good progress across a broad
front of acute and chronic conditions. Yet
I must tell you that none of this progress
is based on new miracle cures, although
some of it, very little actually, is due to
new medical technologies such as coro-
nary bypass surgery. No, it is because
something else is going on in our society,
something outside the domains of formal,
traditional medicine. It is not any single
thing, but rather a constellation of actions
and attitudes that have captured the
imagination of the American people. The
self-help movement is a big part of it, with
people joining together to provide emo-
tional support to each other and to share
information about common health con-

cerns.

In Iight of these developments, I believe
we have the answer to the first question,
"What do we want to do?" We want to
promote good health. We want to prevent
acute and chronic diseases from .occur-
ring. That is the clear direction in which
we are moving today-from almost total
reliance on cure after disease starts to
keeping it from starting in the first place.

What do we need to know to do it
well? Certainly we need to have good bio-
medical science. That is crucial for both
cure and prevention. But we need to
know more-a lot more-about many
things that are new to medicine. We need
to understand more about human
behavior; how people interact with each
other and their physical environment;
how they respond to life-cycle events such
as childbirth, family growth, the matura-
tion and departure of the young, and
death. We need to understand how peo-
ple cope with economic, social, and cul-


tural stress; how they perceive the future
and how they see themselves as part of
it. This kind of knowledge tells us not
only about health, it tells us about
wholeness.

How will we get this knowledge? From
behavioral research? Yes, some of it.
From research in medicine and the other
life sciences? Yes, some of it wiIl come
that way, too. But I believe that a great
deal of the new knowledge on health and
wellness can come from groups like the
ones represented in this workshop-from
you.

Therefore my charge to you is to for-
mulate recommendations around the fol-
lowing questions:

.  How can we develop partnerships
between self-help groups and the health
care delivery system that improve the
health and well-being of the public?
o How can we educate the public and the
health professions on the use and
benefits of self-help groups?
o How can we expand the current
knowledge of how self-help groups
work, their benefits and their Iimita-
tions, through organized research?
o How can we begin to start and support
self-help groups as part of a health care
delivery system?
Let me make a suggestion about your
responses to my charge. Naturally, I want
you to consider issues and make recom-
mendations that a Surgeon General has
some chance of accomplishing, but I also
urge you not to hesitate in making
broader recommendations. The report of
this workshop wiIl go far and wide, and
it is altogether possible that opportunities
will come for me to make a fitting con-
nection for you and your cause in areas

9

where I have no authority to act directly.
I am delighted that this workshop is
taking place. I am also pleased that the
Public Health Service has helped make it
possible and that a number of my col-
leagues from the Public Health Service
are here to learn and share. I congratu-
late the planning committee not only for
its good sense, but also for its sensitivity.
The dynamic and independent nature of
self-help movement people is indeed a vir-
tue, but it is not always conducive to tran-
quil planning and organizing. The com-
mittee came through the crucible of
planning with even stronger commitment
to the goals of partnership.

My special thanks go to Mark Mayeda
and his staff at the California Self-Help
Center and to Marilyn Ruiz and Annette
Nussbaum of the Illinois Self-Help Center
for their very significant contributions to
the workshop. Throughout the many
months leading to this moment they have
attended to countless details without los-
ing sight of the overall objective, and they
have been excellent coordinators.
Now it is up to the rest of us. Over the
next 2 days, let us share our hopes, our
knowledge and experience, our courage,
and our love for who we are. We are peo-
ple who know full well how imperfect the
human race is but are nevertheless deter-
mined to make it better.
Let me leave you with these words by
M. Scott Peck, M.D., from his book, Z7ze
Different Drum:

There can be no vulnerability
without tik. There can be no commu-
nity without vulnerability. And there
can be no peace, and ultimately no life,
without community.

God bless you. Thank you very much
for coming. Now let us begin.


         REMNUB OF
THE HONORABLE JAMES R. THOMPSON

Governor of the State of Illinois

Dear Surgeon General Koop and
Workshop Participants:

My congratulations and best wishes as
you embark on the Surgeon General's
Workshop on Self-Help and Public
Health. I look forward to the results of
your important explorations of the part-
nerships between self-help and public
health.

Self-help has long been of interest to
me and my administration. Indeed, we
are very proud that one of the leaders in
advocating for self-help and mutual aid
is a well-known Illinoisan, Clement Stone.
Stone understood very early how remark-
able self-help could be-a voluntary
effort through which people can help
themselves while helping others-by shar-
ing insights, problems, and support.
Another Illinoisan, Leonard Borman,
founder of the Evanston Self-Help
Center, was one of the first people to sit
on the Advisory Council of my Office of
Voluntary Action. Borman was an artic-
ulate champion of self-help, and under his
leadership a directory of self-help groups
in the Chicago metropolitan area and a

directory of self-help opportunities for
people with developmental disabilities
were developed.

It is important for people to know
about the availability of self-help groups.
In 1983, the Illinois Legislature made a
grant available to start an Ilhnois Self-
Help Clearinghouse. That project has
included many partnerships-my office,
the Clement and Jesse Stone Foundation,
the Illinois Hospital Association, the
American Medical Association, National
Easter Seals, and many others. It is
important that health care professionals
and citizens be aware of the availability
and effectiveness of self-help. Self-help
has had tremendous impact in improving
individual lives. In addition, it is a volun-
tary effort and is extraordinarily .cost
effective.

My best wishes for a successful work-
shop which will help all of us to help each
other.

Sincerely yours,
James R. Thompson, Governor
State of Ilhnois

' Oovernor Thompson's statement was read to the work-
shop participants by Ms. Jean Bradner, Director of the
Office of Voluntary Action, Office of the Governor. State
of Iuinoi.5.

10


         REMARKS OF
THE HONORABLE GEORGE DEUKMEJIAN z

Dear Surgeon General Koop and
Workshop Participants:

I would like to take this opportunity to
welcome Surgeon General Koop and all
the participants of this Workshop on Self-
Help and Public Health. I am especially
pleased that you have chosen the Califor-
nia Self-Help Center, a program initiated
by our administration and funded by the
California Department of Mental Health,
for the site of your conference.

It is becoming increasingly evident that
self-help groups are particularly effective
in helping people cope with personal and
health-related problems. The dramatic
increase in the number of groups, both
in California and throughout the Nation,

has enabled thousands of individuals to
seek the comfort and support of others
facing similar concerns.
With representatives from self-help
organizations, the media, human services
agencies, educational and research pro-
grams, business, and labor, this national
conference wiIl enable the individuals with
varied backgrounds to address the future
of self-help in the United States.
I am confident that with your strong
support and leadership, Dr. Koop, this
workshop will be a success. Please accept
my best wishes.
    Most cordially,

George Deukmejian, Governor
State of California

' Oovemor Dmkmejian's letter was read to the workshop
participants by Mr. Clifford Alknby. Sxraary of the
California Health and Welfare Agency.

11


WELCOMING ADDRESS BY
   MARK MAYJ3DA

     Workshop Moderator
Deputy Director of the California Self-Help
Center University of California, Los Angeles

On behalf of the planning committee
and the California Self-Help Center, I
welcome Dr. Koop, other honored guests,
and workshop participants. This Surgeon
General's Workshop on Self-Help and
Public Health is a historic event.
Although it is only one step in gaining
national recognition of the self-help
movement and acceptance of the vitality
of its principles, it is a major step.

All of us here today share an interest
in self-help, but my perspective may differ
from many of yours. I am a public
administrator by profession and for the
last 15 years I have been involved in
managing not-for-profit organizations
providing human services. As I gained
experience in my field, I came to under-
stand that an ever-present challenge is
how to provide effective, quality services
when resources are limited and needs for
those services often exceed an organiza-
tion's capacity to respond. It was only
about 2 years ago, a year after I joined
the California Self-Help Center, that I
fully realized that self-help and mutual
support presents an opportunity to meet
this chaIIenge. To understand why this is
so, let me call your attention to some of
the factors that make self-help groups so
effective. My esteemed colleague, Dr.
Bonnie Burstein, has identified three
major things that these groups provide.

First, they eliminate the isolation of
their members. When people develop a
health or health-threatening problem they
usually fee1 isolated and distant from

those who do not have the same condi-
tion. However, groups of people who
have a common problem and common
experiences can end their isolation by
sharing their feelings and giving each
other needed emotional support. An
example is SHARE, a breast cancer self-
help mutual support group in New York.
SHARE helps women cope with a highly
distressing and physically difficult health
situation. Members are able to deal with
feelings that they have not been able to
share anywhere else.

Second, members of such groups gain
perspective by providing information on
what can be expected emotionally, phys-
ically, financially, and socially, and much
of this information is based on the per-
sonal experience of the members. Groups
can also provide information on effective
coping strategies. For example, I CAN
COPE, a cancer self-help and mutual
support group, helps its members under-
stand what to expect from cancer treat-
ments, such as chemotherapy and its side
effects.

Third, self-help and mutual support
groups help their members develop a
sense of empowerment in situations that
usually create feelings of helplessness. The
sense of empowerment comes in two
ways: seeing others cope with the same
concern, and helping oneself by helping
others. The CaIifomia Network of Men-
tal Health Clients and the National Black
Women's Health Project are examples.
Both use self-help mutual support groups

12


to develop in their members a sense of
empowerment and control of their own
well-being.

Fourth, self-help and mutual support
groups are able to reach not only those
who are directly afflicted but also those
who are close to them.

These attributes of self-help and mutual
support groups can have important con-
sequences for public health, and in my
view they support the validity of seeking
partnership between the self-help move-
ment and the health care delivery system.

However, I must also stress the impor-
tance of respecting the integrity and
autonomy of the groups. The full value
of self-help and mutual support groups
is possible only because they are self-
Governing and serve the needs of their
members, not those of outside powers.
There is much that all of us need to
learn and understand about self-help and
mutual support. We face formidable
challenges over the next 2 days and well
into the future, but I am confident that
we are equal to the task.

WHO WAS INVITED HERE-AND WHY

         Frances Dory
Member of the Selection Subcommittee and
Executive Director of the New York City Self-Help
         Clearinghouse

Hundreds of people were nominated as
potential participants in this workshop,
and to have invited them all would have
made a conference far too large to oper-
ate effectively. Though we had selection
criteria, it was no easy matter to sift
through these nominations. Your
presence here means that, in the opinion
of both the selection subcommittee and
the larger planning committee, you best
represent the self-help movement in
America today.

You bring a wealth of experience and
knowledge that we need, and we respect
and appreciate your commitment to apply
that experience and knowledge to improv-
ing the well-being of the American peo-
ple. We know how difficult it was for
some of you to get here, and we thank
all you for coming.

There are 175 of you here from 23
States and the District of Columbia. You

are equally divided between men and
women and between human service
providers and self-helpers, and 27 percent
of you are members of racial minorities.
A substantial number of you are people
with disabling conditions, and you are a
very significant part of the self-help move-
ment. This diversity is essential to the
work we will be doing over the next 2
days, and it will be reflected in the com-
position of each of the smaller topical
groups to which all of you will be assigned
when we get down to the business of this
conference.

Now I want to tell you a little story.
It's about a man named Sam who died.
On arriving at the gates of Heaven he
petitioned St. Peter, who was surrounded
by a host of angels, to let him in. St. Peter
informed Sam that he would first have to
make a brief presentation about his
qualifications. Unfortunately, Sam had

13


not participated in any self-help groups
and therefore was not fully prepared to
deal with this level of disclosure. He said
he would have to think a bit before he
could come up with something St. Peter
might find acceptable. St. Peter, being a
good helper, encouraged Sam to reflect
on his life and recall some event that
could provide convincing evidence of his
eligibility for admission, then left him
alone to ponder.

When St. Peter returned after awhile,
Sam told him he thought he deserved to
be in Heaven because he had survived a
great flood in Johnstown, Pennsylvania.
St. Peter, bewildered, asked him to
explain why that should be a qualifica-
tion. "Well," said Sam, "that flood came
when I was a boy, and it was scary, there
was a lot of damage, and a lot of people
died. But I survived it, and that's why I
think I should go to Heaven." After a
long pause, St. Peter motioned toward the
band of angels and whispered, "Sam, I
think I ought to tell you, Noah is in the
audience."

We who organized this workshop
understand how Sam must have felt at
that moment, because all of you in this
audience are Noahs. Yes, we did work
hard, but we are mindful that we are
building on values and traditions that
have been carefully and deliberately
thought out by people like you, who have
worked hard over many years and know
what it's like to be in a real deluge.

The self-help movement is diverse and
not especially well organized, but it is not
haphazard. Since the founding of Alco-
holics Anonymous more than 50 years
ago, self-help groups have proliferated at
a phenomenal rate. Ten years ago, the
President's Commission on Mental
Health set the stage for the interface of
formal health care systems and informal
helping networks by recommending the

development of resource centers to col-
lect and disseminate information on self-
help groups. These centers, many of
which are now known as self-help
clearinghouses, have added immeasurably
to the proliferation of support groups in
their geographic areas. There are now
more than 40 of these clearinghouses in
the United States and several in Canada,
and linkage between self-helpers in differ-
ent countries was established just 2 years
ago with the formation of the Intema-
tional Network of Mutual Help Centers.

Today we begin another leg of this
journey of pulling our movement
together, making it better organized and
more effective, and becoming clearer
about what we want and need. No mat-
ter whose figures you use, there are more
than 10 million people who regularly par-
ticipate in mutual aid groups. By any
standard, when that many people are
doing something in essentially the same
way and out of the same belief system,
what you are witnessing is a social move-
ment. Like the women's movement and
the civil rights movement, we are part of
an effort to create social change in
America, and like all such movements,
our goal is to improve the relationships
among people.

What the self-help movement is about
is better relationships in the spiritual
sense. It is about the changes needed in
human services agencies to make them
more effective, more accountable, and
more meaningful to the people they hope
to serve. In this new leg of our journey,
we have to do more than look at those
whom we serve now. Some of the unmet
needs we will be addressing in the next
couple of days involve huge numbers of
people who are not being served. An esti-
mated 22 million people in this country
have hypertension, but not many of them
are being served by self-help groups at this

14


time. It is also estimated that there are 6
million substance abusers, 5 million dia-
betics, and 18 million arthritics. I am sure
Dr. Koop could tell us about the number
of people who still smoke, and about the
lung diseases and other disorders they risk
or have because of it. Self-help groups
exist for all of these conditions, but most
of the people who have them are not yet
participating.

The task we face is enormous, because
the number of people who are not being
served is enormous and that number
keeps growing. For example, 10 years ago
acquired immunodeficiency syndrome
was unheard of, but today most of our
self-help clearinghouses are dealing with
the huge task of reaching out to people
who test positive for HIV, to those who
actually have AIDS or AIDS-related com-
plex, and to those who are struggling to
give them care. We believe that self-help
has enhanced the services available to all
these people.

These tremendous unmet needs can be
met if we can tap the tremendous human

potential represented by the very people
who are having the problems, yet too
often those people are seen as problems,
not as resources. You and I know that
every person who has arthritis, diabetes,
AIDS, or any other condition is a poten-
tial caregiver capable of helping others
resolve, cope with, and change the con-
ditions of their lives.

This entire society cries out for new
definition of the ways people relate to
each other. The essence of right relation-
ship is seeing ourselves as part of the solu-
tion and recognizing that none of us is
safe from tragedy. Levine's phrase, "the
soap opera of life," applies to all of us.
We are not at this workshop to talk about
what we in here can do for them out
there, we are here to talk about how all
of us in this society can save ourselves by
helping each other. That is our hope-
that we can begin to see ourselves as a
community and as part of a very, very
important movement, and perhaps its cut-
ting edge.

WHAT HEALTH PROFESSIONALS CAN LEARN
    FROM BREAST CANCER PATIENTS

         Leonore Miller
Member of the Planning Committee and
President of the SHARE Bremt Cancer Group
       New York, N. Y.

Twelve years ago, I could not have   We began 11 years ago, inspired by Dr.
imagined that anything positive could  Eugene Thiessen, a concerned physician
come from having breast cancer. Now,  who felt that breast cancer patients, espe-
looking back, I can say that out that  cially younger women, needed to discuss
frightening and devastating experience  their concerns with their peers. Though
some rewarding outcomes did emerge,  he was a physician who had the sensitiv-
namely my involvement with SHARE, a  ity to see the painful emotional aspects of
self-help group for women with breast   this disease, Dr. Thiessen was neverthe-

cancer.                 less a frequent target of anger among the

                      15


women, as a symbol of all the surgeons
who were perceived as having massacred
and disfigured us.

Over the past 11 years I have listened
to the experiences of more than 600

women. All of them were unique
individuals, but the fear, the anger, the
depression, and, yes, the hope they
expressed was universal. Through floun-
dering and trial-and-error learning we
learned ways to cope with this life-
threatening illness and its emotional,
social, and practical impacts. We each
brought our own history to our illness, so
we all reacted differently to it, but always
consistently with the core of ourselves.

Hippocrates said he would rather know
what sort of person has a disease than
what sort of disease the person has.
Listening to each other and sharing our
differences gave us the ability to appreci-
ate our basic similarities and thus validate
ourselves. Watching others nod their
heads in affirmation as we spoke was
more comforting than a thousand words
from someone else who did not truly
understand. Sometimes when a new
member arrived, tears of relief would
flood her eyes because at last she could
allow her feelings to surface in an
atmosphere of encouragement and
warmth.

At that time, radical mastectomies were
the order of the day. Breast reconstmc-
tion was not on the scene yet, and involv-
ing the patient in medical options was still
in the distant future. Lumpectomies were
considered poor medicine, and power
between the women and the medical
establishment was very unbalanced. It was
not until 1979 that insurance companies
stopped classifying breast reconstruction
as cosmetic surgery and began to reim-
burse for it, although they had always
reimbursed for testicular implants.

These changes were accomplished by

women who became knowledgeable med-
ical consumers, who began to regard
themselves with confidence and trust and
to feel their own power. Mutual aid
groups were instrumental in fostering this
spirit, because when women came
together in an atmosphere of trust and
acceptance, their collective experience
gave flesh and bones to theory, and the
subjective become something visceral.
This understanding needs to be commu-
nicated to health care providers through
networking, informal meetings, informa-
tional materials, and the personal self-help
experience a health care provider might
have encountered.

Many women feel shame and guilt
because they have cancer. The very word
evokes the thought of death. An atten-
tive health care provider can diminish
guilt and shame and reinforce the idea
that cancer carries with it no moral impli-
cations or judgments. The altered body
image does create problems regarding
desirability and sexuality. But before dis-
cussing sexual matters with patients,
health professionals should be comforta-
ble both with the subject and the collo-
quialisms used to discuss it, be prepared
for all types of questions, be nonjudg-
mental and supportive, include the part-
ner whenever possible and without assum-
ing that it is always a male or that there
even is a partner, have a quiet private
place to talk, and really Iisten.

Two national surveys indicated that the
three main determinants of patient satis-
faction are all related to contact with the
physician. Most important is the initial
contact, then the information conveyed,
and finally, the general supportiveness.
Physicians are trained to cure. They are
used to success and want to be superhu-
man, but cure is not always possible or
certain. Physicians who cannot handle
their own feelings in this situation may


withdraw just when the patient is most in
need of support. Training in medical
schools and hospitals is needed to help
physicians deal with their own feelings
about death and lack of success.

Health care providers need to keep up
with the latest developments in the field,
both to diminish their own pessimism and
to avoid cutting off hope in their patients.
Nurses have the most intimate contact
with patients and the greatest opportunity
to pick up clues and communicate with
warmth and understanding. But being
female, as most nurses are, has its own
special problems in caring for breast
cancer patients. Nurses may be con-
strained by their identification with the
patient and their own fears of illness and
death. If a nurse has had breast cancer
she must be careful not to react in terms
of her own disease, but in terms of the
patient's needs. Coping strategies for
stress and burnout need to be considered
for anyone working with high-risk
patients.

The sensitivity of professionals in their
relations with patients was a topic that
came up many times during group meet-
ings. I can remember lying on a table in
a huge chilly lab, waiting for the results
of a lung biopsy. The technicians had a
few idle moments while the test was being
done to see if my cancer had metastasized
to my lungs. They began to chat and joke
and laugh among themselves while I lay
there trembling and waiting for the news.
It was Friday afternoon, and as they
talked about their plans for the weekend,
it made me feel acutely that I might never
be part of that normal world again. I was
too frightened to speak up and ask them
to stop, yet I also understood that they
were expressing their own need for release
from tension. Fortunately, the results
were good, but later, when I knew more
and heard similar stories from so many

other women, I was sorry I had not used
the opportunity to point out to them how
that kind of banter exacerbates a patient's
anguish.

One of the women in our group was
frightened of her chemotherapist. He
seemed impatient when she asked ques-
tions and he often engaged in long phone
conversations during her treatment. But
she also felt that her life depended on
him, and she was afraid of retribution if
she were to make her needs known. The
women in the group tried to encourage
her to speak up, and one of them volun-
teered to accompany her on the next visit
and give her support in confronting the
physician. The two women did go
together on the next visit, and although
the SHARE volunteer said nothing, her
mere presence improved the situation.
The doctor did become more cooperative
and his telephone conversations did
become shorter.

Trust in the doctor is a prime requisite
for creating a receptive environment for
treatment, but a trusting relationship
implies that patients feel it is safe to criti-
cize. How contradictory it is when a phy-
sician responds with professional ski to
save a woman by surgical or medical
intervention, then denies her the support
she needs to form a different lifestyle and
adjust to an altered body image, and the
woman-frightened and depressed-is
unable to say anything about it.

Out of the hundreds of meetings of our
group over the past 11 years a body of
subjective knowledge has emerged,
through groping and pain, trial and error,
sharing and laughter. I want to summa-
rize what we have learned, because I think
it provides a true grasp of what self-help
is all about. Furthermore, I think it can
lead to a real partnership with the formal
health care system that is built on a
bedrock of understanding.

17


D Fear, anger, and depression are normal
responses to a serious disease.

b There is solace and validation in shar-
ing with peers.

) Grieving is healthy because it frees up
your energy to get on with your life.
But grief comes in layers, and each
layer must be worked through or it goes
underground and emerges in undesira-
ble ways. One woman told us that after
mourning the loss of her breast she was
able to grieve about the loss of her
father, then her divorce, and finally,
the loss of her pet.
m Facing the possibility of death means
losing your feeling of invulnerability.
It is much like losing the innocence of
childhood. But facing reality can
enhance the good times, change your
perspective, and establish your priori-
ties. You become able to ask questions
like, "If not now, when?" and the
social hypocrisy most of us indulge in
from time to time seems superfluous.
B We need to feel in control again, even
if we know it is an illusion in the grand
scheme of things. We need to feel we

can take charge of our own bodies, be
informed medical consumers, and par-
ticipate fully in decisions regarding our
health. An uninformed choice is not a
real choice.

o We are more alike than different, but
we need to appreciate and respect our
differences.

o There is a difference between enlight-
ened self-interest and selfishness.
o Living with uncertainty is difficult, but
it is possible. Having cancer taught us
what was always true, that life is uncer-
tain.

o There are many kinds of courage, and
though we cannot absorb courage from
others, we can be inspired by it.
o Each of us is a person of value, and
when we respect our own essential
humanness, we can bring that respect
to others.
For me, that is the message of partner-
ship. This workshop is a special moment
in time-a time for self-helpers and health
professionals to reflect and join hands to
fight our common enemies, ignorance
and disease.

WHO WAS INVITED HERE-AND WHY

         Frances Dory
Member of the Selection Subcommittee and
Executive Director of the New York City Self-Help
         Clearinghouse

Self-help clearinghouses represent one   in their communities and increase aware-
of the most exciting and innovative forms  ness of their availability by people in
of human service today. Over 40 of them   need.
have been created across the country in   These clearinghouses also serve as
the last decade, and each of them has  bridges for increasing collaboration
been fmding new and different ways to  between the self-help and professional
foster the development of self-help groups  communities. Through their work they

                      18


demonstrate some of the possibilities that
exist for any organization to collaborate
with self-help groups in meeting people's
health and human needs.

Our experience in New Jersey is just
one example. At our medical center, it all
began with a simple list containing con-
tacts for some two dozen seIf help groups.
It had been compiled because several hos-
pital staff members had often asked for
these hard-to-find resources and were
reporting how grateful patients were to
learn about them. The more the list was
circulated, the more it grew, until it even-
tually included nearly 70 groups.

As we followed up on leads, we began
to come in contact with people who had
wanted to start a group but didn't know
how to proceed-people like Elinore Neal
of Reach to Recovery, who said, "I don't
want to start this mastectomy group for
myself. I simply want to prevent other
women from having to go through the
hell I've had to go through alone." We
linked people like Elinore with all the
related national or model groups we could
identify, so they wouldn't have to rein-
vent the wheel. We eventually published
this list as a directory that included
national groups that had no local chap-
ters, so people could see what new groups
might be started in their community.

We had observed what we refer to as
a demonstrational effect, and we saw its
power to encourage people to start new
self-help groups in their communities by
providing evidence that a similar group
had been started somewhere else. For
example, we had numerous calls request-
ing information on groups for survivors
of suicide. No such groups existed in New
Jersey, but we were able to send callers
materiaI from a model group in the mid-
west. One woman called back in tears,
explaining that the material had shown
her how starting such a group could pro-

vide meaning to a meaningless act.

Hospital staff expressed an interest in
helping patients form new groups. A
laryngectomy club was started with the
help of the speech and hearing clinic staff.
The mental health center's phobia pro-
gram staff assisted in developing an
independent phobia self-help group for
patient aftercare support.

As time went on, more and more lay
people called seeking a group, and if there
was no group to refer them to, we would
simply ask them if they would be in-
terested in joining with others to form a
group. We recorded the names of those
who said yes so we could link them with
the next caller who might also be in-
terested in developing that particular kind
of group. It was like rubbing two sticks
together to make a fire. Those linkages
often resulted in new groups. We began
to realize how, with a little encouragement
and support, some of the help-seekers
who called us could be readily trans-
formed into resource developers who
started groups.

We have found that one of the most
appropriate roles we or other profes-
sionals can take in helping these groups
is that of consultant, giving advice and
counsel but not getting involved in actual
decisionmaking or leadership. In our
view, the professional should remain on
tap, not on top.

In 1981 we extended services to the en-
tire State using toll-free phone lines and
a computer system that included a local,
State, and national directory. Since that
time, by providing encouragement and
support, we have assisted in the develop-
ment of over 420 new groups across the
State. We have given consultation to pea
ple like Nancy Berchtold, who called us
2 years ago to ask about a group for post-
partum depression and found that there
weren't any. She went on to develop one

19


of the first such groups in the country,
and it has since grown into a national or-
ganization helping many more groups get
started. Then there are Sally and Jeff
ToughilI, who founded the Histiocytosis-
X Association of America to work with
and learn from other parents of children
with that condition.

Clearinghouses have helped start many
groups across the country that have deve-
loped into State or national foundations.
We should recognize that many long-
standing health foundations, societies,
and agencies dealing with specific illnesses
began as self-help groups. This form of
development continues today as improved
medical technology and research increase
the survival for previously life-threatening
disorders and continue to identify new
disorders.

In 1984 a blind c.alIer educated us about
the need for special self-help groups for
people who were losing their sight. We
worked with him and wrote a proposal
that provided him with a driver, a staff,
and a position at the clearinghouse. His
name is John Dehmer, and he and his
staff have started over 30 new self-help
groups across the State for people who
are visually impaired or adjusting to
blindness.

In other development work, the clear-
inghouses use self-help group representa-
tives as paid part-time consultants for
education and training. Our clearinghouse
currently helps over 10,090 callers a year
with referrals; over a third of them are
professionals who have no other place to
turn. We also publish a State directory
each year along with newsletters and var-
ious how-to materials, and we assist in
conferences and workshops throughout
the year that bring professionals and self-
help group leaders together to learn from
each other. Foundation-funded grants
have allowed the creation and distribution

of Tel-Med tapes on self-help for every
hospital in New Jersey and the publica-
tion of a national directory of groups.

Still there is a great need for learning.
It was Marie Kill&a, speaking at one of
our New Jersey conferences on self-help,
who wisely counseled us that the first
thing professionals have to learn about
self-help groups is that there is something
to learn. Although professionals have
become increasingly aware of the value of
self-help groups, few understand the
underlying principles of self-determina-
tion and empowerment that are fun-
damental to their life and success. By
understanding these principles, profes-
sionals and self-helpers hay a better
appreciation of how to form partnerships
without compromising the essential nature
of self-help.

I believe the most important need is to
respect self-determination. Several years
ago I asked Dr. Agnes Harfield, a re-
searcher who is one of the founders of the
National Alliance for the Mentally Ill,
what she felt was the most important fac-
tor that contributed to the vitality of a
successful self-help group. Her reply was
one word: "Ownership." A sense of own-
ership on the part of the members. To the
extent that the members recognize that the
group is theirs, they will invest their time
and effort to make the group work. But
if they perceive that the group is owned
by someone else, whether a professional
or an agency, they tend to step back and
let the professionals do the work.

In negotiating any partnership it is
important to have a true sense of equal-
ity and mutual respect for each other's
values and knowledge, whether that
knowledge is experiential or professional.
A partnership is built between equals.
Self-help groups empower their members
to regain control of their lives and deal
effectively with their condition. They

20


encourage individuals to assume an active
role in restoring and maintaining their
health. Some groups are advocacy
oriented, reflecting a healthy skepticism
of our health care delivery system and
helping to make health care more respon-
sive to consumer needs.

Several self-help groups have shown
their ability to improve public health on
at least three other levels of health care
delivery. First, they have demonstrated
their ability to prevent some health
problems from occurring by reducing
stress in general, a5 well as through educa-
tional programs such as laryngectomy
clubs, stop smoking campaigns in schools,
and certainly the advocacy efforts of
Mothers Against Drunk Drivers
(MADD). Second, they have shown that
they can supplement and humanize treat-
ment services by serving as adjuncts to
treatment or providing social support and
help that is not available within the
professional milieu. Third, they have
demonstrated their ability by providing
aftercare services that reduce recidivism,
reinstitutionalization, and readmission to
the health care system.

There are some areas that require
development. From our experience, the
media clearly have tremendous power to
inform people about self-help. We saw
that in the case of a woman who called
us after seeing a television program about
incest. She told us it had been 40 years
since she had been abused by her father,
and she had never spoken to her husband
or her therapist about it. The TV pro-
gram, which depicted a self-help group,
had given her the courage to reach out to
someone else. We can do much to max-
imize media resources, from promoting
weekly newspaper listings of groups to
developing public service announcements.

Advances in telecommunication pro-
vide additional opportunities. Telephone

and computer conferencing systems have
permitted an increasing number of self-
help groups to meet over great distances.
Our clearinghouse has helped host
telephonic meetings of people with Ehlers-
Danlos syndrome, a connective tissue dis-
order. It was the first opportunity they
had to talk with other people who had
their condition, and several of them went
on to form a national foundation for the
problem,

Health care and other agencies can play
a role in making this technology more
available to self-help groups, for reach-
ing out to rural areas, and allowing par-
ticipation by people who are unable to
leave their homes or their hospital beds.
Electronic communication will surely
increase the linkage of people, ideas, and
concerns in the years ahead and will pro-
vide many innovative ways for people to
find and develop the mutual aid and sup-
port they need.

Local self-help clearinghouses and
resource centers, which now serve almost
half the country, have their own stories
to tell about the partnerships they have
helped create and the ones that remain to
be created. The International Network for
Mutual Help Centers, an association of
centers that was formed in 1985, serves
as a forum for the development and
exchange of these and other ideas that
support the philosophy and practice of
self-help. Members of the network may
be of service in implementing some of the
recommendations that come out of this
workshop.

All of us here realize profoundly the
immense potential of self-help groups,
and we know that more must be done to
make health care professionals aware of
these resources so more people can find
the support and the help they need. We
recognize that it would be unethical for
a physician to withhold the medication a

21


patient clearly needs. With the increasing
amount of research that indicates the
value of social support in restoring and
promoting health, we must ask ourselves
if professionals do not have a similar obli-

gation to provide patients with referral to
self-help groups when they know it can
reduce suffering and promote recovery or
rehabilitation.

   SELF-HELP FOR
HEALTH PROFESSIONALS

         S. Denfie Rouse
    Member, Planning Committee
Board Member of the National Black Women's
Health Project Commissioned Corps, USPHS

Like many others, I came to the self-
help movement seeking an alternative. I
was dissatisfied by the lack of progress in
improving health in the black community.
I knew that most black Americans had
some access to health care, but I was also
aware that it wasn't making much of a
difference. Knowing that the major causes
of excess morbidity and mortality are
behavioral, I chose to look outside the
system.

My search led me to the beginnings of
the Black Women's Health Project of the
National Women's Health Network,
which later became the National Black
Women's Health Project, Inc. This is a
self-help organization whose purpose is
the empowerment of black women
around issues of improving their own
health status, and its major intervention
strategy is the self-help group. Support-
ing strategies include developing health
promotion material oriented to black
women-films, videos, brochures, news-
letters, and conferences-and developing
a body of accurate information about
black women for use in forming public
policy.

22

I came into this movement with the
notion that I would find a tool that would
enable me and others to improve our

health. What I also found was a way to
improve my own life. I also learned that,
for most people, it is not what is done to
them that makes a long-term difference
in their lives and in their health, but what
they can do for themselves.

Shortly after becoming involved in self-
help, I was reassigned to West Alabama
HeaIth Services, a rural health care deliv-
ery system in Alabama. With the gracious
and generous support of Jim Coleman,
the executive director, and Sandra
Hewlett, the medical director, we began
to test self-help as a tool for improving
health status, using the self-help model
developed by the National Black
Women's Health Project.

We started staff groups first as a way
to validate the appropriateness of using
self-help as a tool for health promotion,
with additional goals of improving com-
munication among the staff, enhancing
their sensitivity and responsiveness to
clients, and improving staff-client com-
munication. The self-help groups for staff
were organized in three settings-an
ambulatory care center, an infant survival
project, and a nursing home. The par-
ticipants, who self-selected after the
project was presented to all staff mem-
bers, represented all but one of the profes-


sional and nonprofessional staff
categories. The only category not
represented was dentistry. The staff
groups started in November 1984, meet-
ing weekly for six months, then every two
weeks. The average membership was 19
and the average attendance was 10. These
groups dealt with workplace issues, per-
sonal health problems, and family
problems.

The long-term care facility was in a
state of crisis when we formed a self-help
group there. West Alabama Health Serv-
ices, which is a federally funded primary
health care center, was in the process of
developing a health maintenance organi-
zation for the Medicaid population as a
demonstration project. The county hospi-
tal and nursing home were on the verge
of closing, and since their closure would
have ended the development of the health
maintenance organization, that organiza-
tion took over their management. The
nursing home was in danger of losing its
license because of the quality of the care
that was being given to its residents. Self-
help group techniques were used in
managing the staff during this crisis and
in reshaping the staff into an effective
long-term care delivery team. The nurs-
ing home retained its license and patient
care improved dramatically.

The issues addressed in the long-term
group were feelings of oppression by
management, inability to cope with a
rapidly deteriorating and demanding
workplace, low morale, perceived racism
in work relations and in patient care, dis-
sociation of the staff from the residents,
and the problems of coping with disabil-
ity, dying, and death on a daily basis. The
self-help group also supplied motivation
for staff in a setting where financial incen-
tives were lacking.

We found that staff members valued
the opportunity to have input in decision-

making, to share relevant experience and
expertise with management, and to be
recbgnized for the first time as valued and
respected members of the he&h care
delivery team.

From our experience with the staff
groups, we concluded that the model was
indeed appropriate for our clients and
proceeded to form a young mothers
group. These were first-time mothers,
which in that community means teen-
agers. The participants were also par-
ticipating in an infant survival project
funded by the Ford Foundation. During
the group's first year there were no infant
deaths. The group, which caIled itself
"Sharing Good Values," began a loan
fund to alleviate the shared experience of
not having enough money to get through
to the end of the month, raising money
for the fund by organizing dances and
rummage sales. Group members were
able to deal openly with such sensitive
issues as contraception, teen pregnancy,
sexually transmitted diseases, breast can-
cer, obesity, and family violence. This was
possible because the self-help process
alleviates feelings of isolation, powerless-
ness, and hopelessness, which affect
behavior profoundly. Sharing occurred in
an atmosphere of trust and acceptance
that many of these young women had
never experienced in their daily lives.

The National Black Women's Health
Project has found that self-help groups
are very effective in bridging the gap
between the public health community and
the black community. Felicia Ward, a
self-helper in Oakland, California
explains that the reason lies in the process
of empowerment. Individuals recognize
their own need to change and want to
share their experiences with others, so
they form a group. The group in turn
wants to share what it has learned with
the entire community. This progression

23


from the individual to the group to the
community is a normal, natural flow of
information that has been validated by
the leaders in the community.

In Georgia the National Black
Women's Health Project uses their model
of self-help group development to mobi-
lize women to participate in a series of
maternal and child health conferences
sponsored by the Georgia Department of
Human Resources. In North Carolina
five self-help groups formed the bone and
sinew of a statewide health planning net-
work that has established a historic link-
age between North Carolina A&T College
of Nursing, the NAACP, the North
Carolina Child Development Institute,
and grassroots women. Similar networks
now exist in South Carolina and Califor-
nia. In California the South Berkeley
Women's Center is using the self-help
group as a tool for helping women cope
with their health problems.

I believe the beneficial effects of self-
help on public health are infinite. I will
mention just a few. Self-help breaks down
the communication barriers between pro-
viders and clients by creating an environ-
ment where greater trust is possible, where
the client can be viewed and understood
as a whole person. It provides a process
for translating health information into a
usable form, frequently by the clients
themselves. It builds bridges between pub-
lic health and the community and pro-
vides a mechanism to get information to
hard-to-reach groups, and this is critical
for implementing community-based
health promotion programs. It offers
providers additional tools for coping with
an ever-changing and demanding work-
place. It offers providers insight into their
own frustrations about noncompliant
patients. Self-help provides an opportu-
nity for providers to share their
knowledge and expertise in a receptive,

nonthreatening atmosphere. It can be a
tool for resolving sensitive issues and con-
flicts in the workplace. It can give pro-
viders a tool for coping with their own
responses to disability, death, and dying,
and this is especially relevant in long-term
care settings and in caring for AIDS
patients.

In the six years I have been involved
with self-help I have learned six lessons:

1.

2.

3.

4.

6.

The self-help process is particularly
effective in dealing with isolation,
powerlessness, and hopelessness.
It is effective in enabling people to
cope with many forms of oppression,
whether by society, by individuals, or
from within.
Health information is more valued
when it is delivered by a provider who
has experienced a health problem first-
hand and can share that personal
experience.
Self-help principles are highly adapt-
able to different sexual, racial, and
cultural groups. For example, the
National Black Women's Health
Project has successfully shared its self-
help model with Kenyan, Caribbean,
and Latin American women. Each
community adopts from the self-help
process what they feel will work for
them.

As health professionals we need fi
respect each group's ability to shape
the self-help process for its own needs.
This implies acceptance and respect for
cultural diversity.
It is important to understand one's
own health concerns and behaviors
before requesting others to change. By
going through the self-help process
first, professionals gain valuable
insights as well as credibility.

I believe that a partnership already
exists between self-help and public health.

24


In some of the federally-funded migrant
and community health centers, for exam-
ple, self-help projects have been imple-
mented for infant mortality prevention,
teen pregnancy prevention, diabetes con-
trol, and improved nutrition. My favorite
example is the "brown bag" program of
the Delmarva Ministries Migrant Health
Center in Delaware, in which women in
seasonal and migratory farmworker com-
munities pool their limited food money
to make lower-cost bulk purchases from
a local wholesaler.

The self-help process is particularly
adaptable to the needs of rural and under-
served communities and migrant and
seasonal farmworker populations because
of its ability to end isolation and its mar-
velous adaptability to ethnic differences.
This is especially relevant for the migrant
community, both because it is migratory
and because there are at least five differ-

ent ethnic groups harvesting the Nation's
crops at any given time. The National
Migrant Health Program of the Public
Health Service has, for the first time, a
national program objective to encourage
the development of a self-help component
in the health promotion programs of all
122 migrant health centers.

In summary, self-help offers two major
benefits to health providers: it helps us
cope personally with the work environ-
ment, and it helps us serve our clients. In
addition, it provides tools for program
management and mechanisms for work-
ing with hard-to-reach and culturally
diverse populations. The self-help move-
ment provides a marvelously adaptable
tool for health promotion. I encourage
health professionals to take the time to
understand the process fully by experienc-
ing it first-hand.

THE POLITICS OF SELF-HELP

         Irving K. Zola
  Professor of Sociology, Brandeis University
Co-Founder of the Greenhouse Mental Health Collective
  Co-Founder of the Boston Self-Help Center

There was once a health worker who
was standing by the side of a raging river.
Suddenly she saw someone floundering
desperately in the turbulent water, about
to drown, and she jumped in and pulled
him to safety. She had no sooner restored
the victim's breathing by artificial respi-
ration when she heard another cry of dis-
tress coming from the river. Again she
jumped in and rescued someone on the
verge of drowning. This went on repeat-
edly. As soon as she would save one life
there would be another one to save, and
another, and another. The health worker

spent so much time jumping into that rag-
ing river, dragging out its victims, and
applying artillcial respiration that she had
no time to see who the hell was upstream
pushing all those people in.

I want to talk about certain kinds of
self-help activities that are intended to
prevent people from being pushed into or
falling into that deadly river. For lack of
a better term, I call it the self-help move-
ment's political function. That function
has always been a major part of the
movement. Katz and Bender, in their
extraordinarily fine history of the self-help

25


movement, wrote, "As long ago as the
late 18th and 19th centuries, mutual aid
organizations served not only to deal with
the imminent needs of their members, but
served also to politicize them." Or, as we
might say today, to raise their cons-
ciousness.

Let me briefly articulate some of these
political functions that have always been
present. When I speak of politicization,
I also mean a recognition of the power
dimension in self-help. This was brought
home to me when I was reading Katz's
and Bender's book, but it also was
emphasized for me by the responses to the
survey that was sent out to the par-
ticipants in this workshop. Many of the
respondents said that a crucial issue to be
faced in the provider-patient relationship
is who has control and who is making the
decisions. What this reveals to me is a
strong concern about imbalance of
power.

To regain this balance, almost all self-
help groups in the health care area have
engaged, either implicitly or explicitly, in
what might be called a process of
demystiflcation-of a particular problem,
disease, or disability, of the nature of
treatment, and of what care providers can
give. What some in the self-help move-
ment call empowerment also has politi-
cal dimensions. For many mutual support
groups, empowerment takes the form of
personal advocacy in helping an
individual get through the system,
whatever that system may be.

For other groups, empowerment goes
beyond that and becomes what I would
call interactional advocacy, which is based
a realization that in dealing with the
health care system one should not go it
alone because the power imbalance is too
great. I got that particular insight from
a group called the Black Panthers, who
were setting up a group in my home town

of Dorchester around 20 years ago. The
Panthers felt that no person, especially if
poor, old, and black, should go alone into
a situation where there was such an
imbalance, so they always sent someone
to accompany anyone needing access to
the health care system.

A third political aspect of empower-
ment occurs in groups that are not
organized around a single specific
category of disease or disability but cut
across a number of them. The perspec-
tive of these groups is that certain kinds
of actions can be accomplished far bet-
ter if the similarities among members,
irrespective of the particular nature of
their individual conditions, is recognized.
There may also be an unwitting recogni-
tion in such groups that specialization
according to disease or disability
categories can produce fragmentation and
insularity, and an attitude of, "my dis-
ease is worse than yours."

For some people even this cross-cutting
approach is not adequate, however, and
one result has been the creation of alter-
natives to the mainstream health care sys-
tem itself, all based on the concepts of
self-help. In the late 1960's I was part of
a group that created one of the first
ostomy rehabilitation clinics in the coun-
try. Though based in a hospital and
headed by a physician, it was run com-
pletely by people who had ostornies.
Things got even more explicit in the late
1960's and 1970's. Women formed their
own self-help clinics when they felt that
the predominant health care system could
not hear their voices. A number of disa-
bility groups followed suit and eventually
created not only a movement of the disa-
bled but independent living centers for the
disabled.

Yet, for at least these two segments of
the self-help movement, these internal
gains were still not sufficient. They per-


ceived a need to work for change in the
political, legislative, and social arenas.
This idea was perhaps first articulated in
the book, Our Bodies, Ourselves, which
came from a group of women engaged in
self-help. The thesis of these groups
within the women's movement was that
it is not enough just to support ourselves,
we also have to understand the system
that is oppressing us so we can work for
changes. Out of this movement arose
groups like the Women's Health Network
and the National Black Women's Health
Project.

The development of the disability rights
movement was quite similar. First there
were various groups organized along
specific disability categories- cerebral
palsy, blindness, spinal cord injury, and
many other conditions-and quite sepa-
rated from each other. The 1970's,
however, saw the spawning of much
broader and more action-oriented organi-
zations such as Disabled in Action and the
American Association of Citizens with
Disabilities.

I want to discuss a phenomenon occur-
ring in our colleges and universities
because it illustrates the fruits of
empowerment and proves that even aca-
demics can learn. There was a paper in
the workshop packet that everyone here
received saying, " . . . it is not too far-
fetched to predict that mutual support
psychology will become a staple in gradu-
ate school curricula, just as therapy-
related courses are today." Well, that day
has already come; such courses exist.
Also, in the footsteps of self-help actions
of the civil rights movement that led to
black studies on campuses, and similar
actions in the women's movement that led
to women's studies, there is now a move-
ment on campuses to create disability

studies. The last time I counted, there
were around 40 campuses across the
country that had started disability studies,
and there are now three academic jour-
nals for disability studies, as well as a
newly scholarly organization called the
Society for Disability Studies whose mem-
bers include social scientists, many with
disabilities.

Let me end with a warning. I think it
is in the nature of this historical moment
that the encounter between health care
providers and patients or people with dis-
ability in their families may have the ele-
ments of confrontation. In previous
times, when patients felt disregarded,
abandoned, or misunderstood, they
always had a recourse but it was a pas-
sive one: noncompliance. That is chang-
ing, and words that were once used only
for rhetorical effect, like negotiation, have
become real if not legal parts of some
practitioner-patient relationships. People
with disabilities, people in the self-help
movement, have begun to find their
voices, and occasionally those voices may
be harsh and strident. If so, it is because
the time has been so long in coming, and
there is often the feeling that we have to
shout to be heard.

J. Katz, a professor of psychiatry and
law, has written that the reluctance of
health care workers to share information
and converse meaningfully with their
patients or their families has a 2,000-year
history. This surely means that the
changes to come will not come overnight,
but it does not mean that providers and
self-helpers can passively wait for them to
happen. For if we do, we will find our-
selves living out a 19603 cliche: if we are
not part of the solution, we are certainly
part of the problem.

27


DELIBERATIONS OF THE WORKSHOP

Overview of the Workshop Process

The Surgeon General's Workshop on
Self-Help and Public Health had a num-
ber of unique features. It was designed to
be highly participatory, with all par-
ticipants having equal standing, and it was
highly task oriented. The goal of the steer-
ing and planning committees was to cre-
ate an open process in which all ideas
merited equal consideration in an environ-
ment that permitted scholars, human
service professionals, and self-help leaders
to share their expertise. The deliberative
process of the workshop itself embodied
the ethos of self-help since it was struc-
tured to give theoretical knowledge and
experiential knowledge equal value.

The Modified Delphi Technique

The specific process used in the work-
shop was a modification of the Delphi
technique, a method originally developed
in defense-oriented "think tanks" to
gather the best thinking of experts on a
topic in a short amount of time. In the
original Delphi model, experts were asked
to respond to specific questions and rank
their responses according to priority.
However, there was no personal interac-
tion among the experts in the original Del-
phi technique; they worked independently
of each other and submitted their
responses in writing. In contrast, the
modified Delphi technique used in the
Surgeon General's Workshop involved
direct interaction of participants deliber-

ating in small groups. Thus the workshop
used some parts of the original process
but combined them with humanistic
approaches, particularly those used by
self-help groups.

The Delphi process, both in its origi-
nal form and in this modification,
encourages the ranking of ideas to
increase the probability that the best ideas
will come out on top. Although the
process can produce some tension, that
tension was regarded by the workshop
planners as an essential part of the crea-
tive process and capable of bringing forth
the best ideas.

Small-Group Deliberations

Workshop participants were assigned
to one of eight groups, each of which
reflected as much as possible the compo-
sition of the entire workshop. These
working groups spent the better part of
a morning session examining specific
areas of the potential partnership of the
self-help movement and the health care
delivery system and proposing recommen-
dations. Each group was led by a specially
trained facilitator responsible for helping
organize the work, guiding the group,
maintaining a schedule, and managing
conflicts. The facilitator was assisted by
a recorder who was responsible for keep-
ing a record of the group's deliberations
and proposed recommendations.

Each of the eight small-group work-
shops began with a brainstorming session,

28


.e workshop
nal process
humanistic
se used by

in its origi-
edification,
f ideas to
le best ideas
though the
ension, that
e workshop
of the crea-
inging forth

:re assigned
:h of which
the compo-
hop. These
:tter part of
ing specific
:rship of the
health care
: recommen-
)y a specially
: for helping
the group,
d managing
s assisted by
ble for keep-
deliberations
tions.
group work-
ming session,

a process whose general guidelines are as
follows:

o The sky's the Sit, so don't censor
your ideas-express them.
o Build on the ideas of others.
o Don't judge or criticize other people's
ideas during brainstorming.

o Hold off any discussion until the brain-
storming session is over.

The brainstorming session was fol-
lowed by discussion to refine, expand, or

consolidate the ideas that had been pro-
duced.

This process, which occurred in each
of the eight working groups, yielded 40
recommendations, 5 from each group.
These were presented to the full work-
shop, which considered and debated them
all. After modifying and consolidating
several of the recommendations through
normal parliamentary procedures and
selecting the 16 most favored, the selected
recommendations were divided among the
small-group workshops for development
of possible implementation strategies.

29


CHAPTERIV

RECOMMENDATIONS TO
THE SURGEON GENERAL

The 16 recommendations of the work-
shop are listed here in the order in which
they were addressed by the Surgeon
General in his response (see Chapter V).
This ordering does not reflect the relative
priorities of the recommendations as sug-
gested by the number of votes each one
received The number in parentheses after
each recommendation indicates that
recommendation's level of approval by
the participants. Recommendations that
received the most votes have the lowest
numbers. Suggested strategies for
implementing these recommendations are
in Appendix B.

Recommendation No. I: Develop, fund,
and support a proactive national central-
ized information center for referral to
existing seIf:heip groups and ciearing-
hous@ and for assistance in the forma-
tion of new groups (Priority: 5). Many
self-help groups are small, single-chapter
organizations without resources to adver-
tise their services to those who need them.
Workshop participants favored creation
of a nationwide service to match people
with appropriate exist@ self-help groups,
identify areas and conditions where new
groups are needed, and support the estab-
lishment of new groups.

Recommendation No. 2: Increase the
effectiveness of self-help groups by
facilitating communication among groups
and disseminating successful models for
self-help (Priority: 16). There are many
variations among groups in application of

the self-help concept, and there is no one
best model that is appropriate for all
groups. Self-help groups typically examine
what is being done elsewhere and select
the approaches that seem right for them.
The workshop participants saw a need to
improve this process by more systematic
dissemination of information among
groups.

Recommendadon No. 3: Incorporate self-
help concepts into the policy and practice
of governmental and nongovernmental
organizations,  including health care
providers (Priority: 4). This recommen-
dation expresses the workshop par-
ticipants' conviction that the self-help
process is adaptable to a wide range of
situations and can be incorporated suc-
cessfully in many existing programs. The
participants felt that this incorporation
could bring the benefits of self-help to
those being served by existing programs
without creating a totally new service
delivery system.

Recommendation No. 4: Establish a
structure within the Public Health Serv-
ice for the promotion and development
of self-help (Priority: 8). This recommen-
dation expresses the conviction of the
workshop participants that a partnership
between self-help and public health is
both desirable and feasible. It also recog-
nizes that the self-help movement, to real-
ize its full potential as an instrument for
protecting and improving public health,
needs formal recognition, promotion, and

30


support within the preeminent Federal
public health agency.

Recommendation No. 5: Develop mul-
timedia campaigns aimed at the public,
human services professionals, and self-
helpers (Priority: 15). Members of self-
help groups at this time tend to identify
themselves in terms of a specific problem
that brings them together, for example,
as cancer patients or alcoholics. One result
is that the term self-help is used in many
different ways both by human services
professionals and the general public.
Workshop participants advocated an
educational effort to explain what self-
help is in the broader sense, what it can
and cannot do, and how people can find
or form a group appropriate to their
needs.

Recommendaton No. 6: Support col-
laborative research and demonstration
projects using methodologies appropriate
to self-help group approaches and values
(Priotity: 3). Systematic study of the self-
help process is still very limited, especially
study of the mechanisms responsible for
success. Research in this area has been
hindered by the limits of current research
methods in studying highly informal
associations dedicated to providing full
support to all their members. The work-
shop participants recognized the impor-
tance of research on self-help but stressed
the need to develop appropriate metho-
dologies.

Recommendation No. 7: Develop mech-
anisms for linking self-help resources and
the formal services delivery system as
equal partners, giving special considera-
tion to programs for special populations
(Priority: 7). The workshop participants
endorsed the idea of a partnership
between self-help and public health and
urged the creation of appropriate
mechanisms to facilitate it. They urged

the creation of mechanisms that recognize
both equality in the partnership and
appreciation of the unique contributions
that self-help groups and formal service
organizations can each make to public
health.

Recommendation No. 8: Develop, pro-
mote, and incorporate mechanisms to
educate primaty and secondary school
children about self-help through educa-
tion and health care delivery (Priority:
14). Workshop participants believed that
self-help concepts are beneficial for peo-
ple of all ages, including school children.
Children, no less than adults, can feel iso-
lated by their problems and can benefit
from mutual caring and sharing.

RecommendWon No. 9: Establish, coor-
dinate, and strengthen self-help clearing-
houses and other networking resources at
nationaI, State, and local levels, with self-
helpers having equal involvement in
governance and implementation (Priority:
23). The workshop participants recog-
nized that self-help clearinghouses are
playing a major role in linking the public
with groups, creating networks among
groups, and educating professionals and
the public about self-help. The par-
ticipants urged support for the further
development of these critically important
resources.

Recommendation No. 10: Establish a
national center or institute to fund, coor-
dinate, and facilitate research, training,
and dtssemination of information on self-
help (Priority: 6). This recommendation,
like Recommendation No. 1, addresses
the current fragmentation of the self-help
movement. The workshop participants
urged better communication among self-
help groups as well as training for leader-
ship in self-help and expansion of
knowledge about self-help for the public,
the professions, and self-helpers them-
selves.

31


Recommendation No. II: Channel re-
sources for self-help into underserved
areas and populations such as minorities,
rural areas, low-income people, the aged,
people with disabilities, alternative family
groupings, the homeless, and youth (Pri-
ority: 10). Although there is much evi-
dence that the self-help concept is adapt-
able to serving minorities, low-income,
and other special populations, most self-
helpers at this time are white, middle-
class, and female. The workshop par-
ticipants saw a clear need to reach under-
served populations, who stand to gain
much from self-help.

Recommendation No. 12: Develop and
advocate national policies that recognize
the validity and role of serf-help groups
in the full age spectrum of American soci-
ety (Priority: 12). The workshop par-
ticipants felt that the validity of self-help
concepts should be reflected in public
policy, particularly in the design and
implementation of public health pro-
grams. A continuing focus on self-help
within the U.S. Public Health Service,
with participation of self-help represen-
tatives in shaping relevant policies and
objectives, was considered essential

Recommendation No. 13: Increase
minonuy leadership in the self-help move-
ment and enhance the sensitivity of self-
help organizers and groups to cuiturally
diverse populations (Priori@: 9). This
recommendation, like Recommendation
No. 11, recognizes the benefits that self-
help can provide for minorities, who are
currently underserved. The workshop
participants considered the development
of self-help leadership within minority
populations essential and entirely consis-
tent with the central idea that self-help
groups should arise from indigenous
needs and should be self governing.

Recommendation No. 14: Incorporate in-
formation and experiential knowledge
about self-help in the training and prac-
tices of professionals (Priority: I). The
participants felt that exposure to the con-
cepts and benefits of self-help should be
included in the training curriculums of all
helping professions. Including this
knowledge in the training of health
professionals was considered especially
important for developing a partnership
between self-help and public health.
Recommendation No. 15: Develop and
influence public policy through network-
ing, coalition-building, and advocacy (Pri-
ority: II). This recommendation, which
was mainly directed to the self-help move-
ment itself, reflects a major theme that
emerged at the workshop-that self-help
groups need to end their isolation and
fragmentation and begin working
together to achieve common goals. It was
evident to many participants that,
although self-help groups represent a large
constituency, too few of them have
worked together to influence public policy
on issues that affect their membership and
the self-help movement as a whole.

Recommendation No. 16: Increase Fed-
eral, State, local, and private funding for
self-help groups and activities (Priority:
2). Typically, self-help groups are very
small, very informal, and unskilled at
"grantsmanship" and other kinds of fun-
draising. Yet collectively they are provid-
ing indispensable services that improve
health and the quality of life for millions
of people in a highly cost-effective man-
ner. The workshop participants believed
that with adequate financial assistance the
self-help movement could spread its
benefits to many more millions of peo-
ple. They therefore urged increased fund-
ing of self-help activities from all levels
of government as well as from the private
sector.

32


THE SURGEON GENERAL'S
     RESPONSE

C. Everett Koop, M.D.
  Surgeon General
U.S. Public Health Service

When I became a pediatric surgeon in
1946 there were only five others in the
entire country, so many of the procedures
I did had never been done before. This
new medical specialty allowed many
youngsters to survive what were previ-
ously considered hopeless diagnoses and
be habilitated into our society.

I'm talking about problems such as
establishing continence in a lo-year-old
child born without a rectum.

I'm talking about spina bifida, which
in those days was rarely operated on, and
about hydrocephalus, for which there was
no cure or prevention.

I'm talking about youngsters born with
no esophagus or with an esophageal
defect that required years of training in
swallowing to prevent choking and as-
phyxiation.

One way I helped families who had to
cope with problems like those was by
introducing them to each other. It was for
self-help and mutual aid, only I didn't call
it that. I was reinventing the wheel and
didn't know it.

As time went on, I began to attract a
number of children with tumors. I must
tell you that this was an era when pedi-
atricians practically denied the existence
of cancer in children. It was an era when
even the word "cancer" was unspeaka-
ble. I remember actually being forbidden
to use it when I was on a radio program
talking about pediatric surgery.

One of the frequent consequences of
childhood cancer was death on the hospi-

tal ward, and I saw that after such a
heartbreaking event the student nurse
would lean on the staff nurse, and the
staff nurse would lean on the supervising
nurse. Eventually there was no one to lean
on but me. So we started a self-help
group, though we didn't call it that, for
grieving pediatric care providers. We met
regularly but also spontaneously when the
pain became overwhelming. To this day
in the hospital where I worked there is still
a group that meets with the chaplain to
talk out their feelings.

I put in the first shunt for hydrocepha-
lus, to drain the excessive cerebrospinal
fluid out of the brain ventricles into the
peritoneal cavity. When word of this suc-
cessful surgery spread, children with
untreated hydrocephalus came from far
and wide. There were days when I would
arrive at work to fmd a trailer parked in
the hospital courtyard, and in it would be
a family with a hydrocephalic child. The
heads of some of those children were
huge, as large as the biggest pumpkin
you've ever seen. Many of them had
heads of such size and weight that they
could not be conveniently moved even in
a wheelchair. Many of these children were
intelligent, but at that late stage the shunt
operation couldn't be done. The frus-
trated families of these youngsters became
the focus of another self-help group.

A pediatric surgeon learns early that
there are different types of grieving par-
ents. Those who lose their child in an acci-
dent have their own kind of grief. Those

33


whose children die in mid-childhood of
chronic diseases like cancer have a spe-
cial kind of grief, because they lose their
children after they have become people,
after they have developed personalities.
There is special pain in knowing that the
future of that child, that small person,
will not be permitted to unfold. Some of
these parents seem to lose their children
twice-first when the hopeless diagnosis
is made, and again when the child dies.
The real death is sometimes easier to bear,
because it brings a sense of release and
relief. But sometimes the period between
diagnosis and death is long and extraor-
dinarily difficult.

The grief of parents who lose a child
after a prolonged illness during the neona-
tal period is also of a special kind, because
it is often compounded by a feeling of
unreality. Their child had to be taken
from them for intensive care before they
could even adjust to the fact that they
were parents. They never even had a
chance to bond to the child.

So, about 40 years ago I began to bring
grieving parents together. I do not mean
to imply that excellent groups such as the
Compassionate Friends are offshoots of
what I began. I only offer my experience
to illustrate the fact that a great need will
evoke the same kind of response in many
places at the same time. I tell you these
things to let you know that even 40 years
ago I was interested in and concerned
about self-help. I tried to address the same
problems everyone here is concerned
about-isolation, powerlessness, aliena-
tion, and the awful feeling that nobody
understands.

Before I respond to your recommen-
dations let me say that, although the
leadership in previous Surgeon General's
workshops has been excellent, none of the
other workshops has matched the superb
organization of this one. I am most grate-
ful. I have come to admire, respect, and

34

feel affection for several individuals I
have met here during the past few days.
I wish I could have gotten to know all of
you and heard your personal histories. 1
thank all of you for being who you are
and doing what you do, and I am grate-
ful for the thoughtful and excellent work
you have done here at this conference.

Turning now to your recommenda-
tions, I think Recommendation 1, es&-
iish a national self-help information
center, is right on target. Let me give you
an analogy to explain why I think so. I'm
sure you all remember the Baby Doe case
and the fact that I was the lightning rod
in the Administration for that particular
issue. It was appropriate for me to be the
lightning rod, because when I came to
Washington I had probably operated on
more Baby Does than anyone else in this
hemisphere.

I was convinced that Baby Does existed
for two reasons. The first reason was
obstetricians or pediatricians making snap
judgments in the delivery room about
lesions they did not understand and about
habihtation processes they had never wit-
nessed. The second reason, and the more
important one, was that pediatricians did
not know as much as they should about
the support systems that existed in the
community to help patients and their
families go through the difficult times that
accompany certain diagnoses.

I knew those things and acted on that
knowledge, and now, in various parts of
the country, there are computerized data
retrieval services available to parents and
physicians alike. They can get informa-
tion tailored to their own understanding
and needs. I see no reason why this can-
not be done for self-help, and I will inves-
tigate how it might be done and report
back to you in some fashion.

Recommendation 2-increase the
effectiveness of self-help groups by
facilitating communication among them,


with funding, technical a&stance, and
dissemination of successful self-help
models-is also appropriate. That com-
munication has to be facilitated, and I
think some of your other recommenda-
tions refer to specific ways that might
accomplish it. All these things need fund-
ing and technical assistance, and I will
investigate how that might be best accom-
plished. However, I think the dissemina-
tion of successful models is up to you,
and I will look forward to a Surgeon
General's conference as a followup to this
one, perhaps 3 years from now, when a
planning committee will bring model pro-
grams together at a national meeting so
people can examine, appreciate, and
attempt to replicate them in their own
communities.

I think the merits of Recommendation
3-build self-help into public health
policy and into the policy andpractice of
governmental and nongovernmental
organizations,  including health care
providers-are self-evident. If we are to
do anything with any of the other recom-
mendations, self-help must be trans-
formed into policy. I pledge to do all I
can to build self-help into public health
policy. I can do that best at the govem-
mental level, but the Surgeon General is
not without influence in other sectors.

Recommendation Atabiish a struc-
ture within the Public Health Service for
promoting and developing self-help-ties
all of the previous recommendations
together. I believe such a structure should
be established, and I will explore ways to
accomplish it. I will present your recom-
mendation to Dr. David Sundwall, Direc-
tor of the Health Resources and Services
Administration. Dr. Sundwall has a sin-
cere interest in self-help, and I will ask
him to consider the possibility of estab-
lishing such a structure within his agency.
I will also speak to Dr. Michael
McGinnis, who directs the Office of

Health Promotion and Disease Preven-
tion, to see if some aspects of this recom-
mendation could be carried out by his
agency, whose efforts reach far into the
community. I will not stop there,
however, because self-help cuts across
every health-related service provided by
government. Almost every cabinet depart-
ment has some health component, and I
will explore the possibilities of creating a
focal point for self-help activities with all
of them, taking care to avoid overlap and
duplication of effort.

The aims of Recommendation 5-
sponsor an informational campaign
aimed at the general public, human serv-
ice professiona&, and self-helpers-4
think can best be accomplished by
producing a book, and I would support
that in any way I can. I think it should
be produced by a commercial publisher
and not be a government publication. I
think any commercial publisher who
knew that there are 500,000 self-help
groups in this country would recognize
that such a book would be a best seller.
I would like to work with representatives
of this group to see how this might be
accomplished. One possibility is a mul-
tiauthored book with the Surgeon General
as editor, which would give the prestige
of that office to the endeavor. I am 75
percent certain this could be accom-
plished. My 25 percent uncertainty comes
from awareness of the difficulties a Sur-
geon General might have in accomplish-
ing this without appearing to endorse
specific programs, which is forbidden by
the rules of ethics that govern the person
holding that office.

Recommendation (i-support col-
laborative research and demonstration
projects using methodologies appropriate
to the self-help approach-is extremely
important. As we all know, the self-help
movement, with its estimated 500,000
groups across the country, has had

35


phenomenal growth and has reached a
stage of maturity, so future development
should probably be in consolidation and
networking. Extension of the self-help
initiative in America will require specific
information based on research with
appropriate methodologies. We realize
that self-help groups and scientific inves-
tigators may have conflicting purposes
and needs, and we will do our best to iron
out these difliculties, perhaps in the word-
ing of grant proposal guidelines.

Recommendation l-identify mechan-
isms for linking self-help resources and
the format service delivery system as equal
partners, giving special consideration to
programs for special populations-ties in
with some of the other recommendations.
I think we do need networking, not only
at the grassroots level but through self-
help clearinghouses. I think creating a
partnership between self-help groups and
the formal health service delivery system
will require a major educational effort,
which might culminate in a national con-
ference of self-helpers and health profes-
sionals a few years from now. This educa-
tional effort is the subject of your next
recommendation, number 8.

Recommendation S-develop, pro-
mote, and incorporate mechan&ns to
educate primary and secondary school
children about self-help through educa-
tion and health care delivery. I will en-
courage the incorporation of knowledge
of self-help resources and their value in
the education of young physicians,
nurses, and other health professionals.
They need to know that self-help is an
important resource without which their
patients will be shortchanged. The Bureau
of Health Professions within the Health
Resources and Services Administration
might be helpful in developing guidelines
for this education, and I will bring this
recommendation to their attention.

However, regarding the incorporation
of self-help education at the primary and
secondary school levels, such decisions are
made in local communities and States.
The Federal Government has no direct
role in these decisions. I can promise only
to refer your recommendation to the De-
partment of Education for consideration.

Recommendation 9-establish, coor-
dinate, maintain, and strengthen serf-help
clearinghouses and other networking
resources on national, State, and local
levels,  involving  self-helpers in
decisionmaking-is somewhat covered by
your previous recommendations. That
self-helpers ought to be involved in deci-
siomnaking goes without saying.

Recommendation lo-establish a
national center or institute to fund, coor-
dinate, and facilitate research, training,
and public dissemination of information
on self-help and mutual help-may be
premature. I think we first have to con-
vince the professions and the public that
we can do what we think we can do, and
then the time will come to move in that
direction. Let me call your attention to
the fact that a national center for nurs-
ing research was established only last year,
and it took 30 years of effort to do it.

On Recommendation 11-channel
resources for self-help into underserved
areas and populations such as minorities,
rural areas, low-income people, and
youth--I think the Public Health Service
can serve you well, because its National
Health Service Corps is serving the popu-
lations you named in precisely the kinds
of areas you named. I will do my part to
provide information about self-help to all
in the Public Health Service who deal
with these areas and populations, includ-
ing the National Health Service Corps and
the Office of Minority Health, and I will
direct their attention to any data bases
that might develop.

36


Recommendation 12-develop and
advocate for a national health policy that
recognizes the validity and the role of seif-
help groups and recognizes the full age
spectrum of the American society. I think
this is partly answered by the fact that I
am here and have given the prestige of my
office and the support- of the Public
Health Service to this meeting. Establish-
ing self-help help in national health policy
may be a short or a long way off, but I
can assure you that this Surgeon General
recognizes the validity and the role of self-
help groups, recognizes that they cut
across every aspect of health care deliv-
ery in the country and across all age
groups, and will inform and advocate on
self-help for the duration of his term.

Recommendation W-increase minor-
i@ leadership in self-help and enhance the
sensitivity of self-help providers to cultur-
ally diverse populations-is consistent
with my aims in everything else I attempt
to do, whether it is in smoking cessation,
AIDS, family violence, or care of aged:
to develop leadership in the minority
groups, include them in any planning for
the future, and enhance the sensitivity of
others.

Recommendathm 14-chge knowi-
edge, attitudes, and practices of health
and human service providers by provid-
ing information in farmai professional
training, through direct personal contact
between professionals and self-helpers,
and in other ways such as postgraduate
training and continuing education, about
self-help groups and their benefits; and
extend these same principles to other
prof=ions who contact people in trou-
ble, such as police, clergy, school coun-
selors, and probation officers.

This is probably the most far-reaching
of your recommendations and certainly
the longest, but it covers many of the
things I have already promised to address.
We have covered the matter of incor-

porating self-help knowledge in the train-
ing of health professionals, and I think
once that is established, post-graduate
studies, on-the-job training, and continu-
ing education will inevitably follow.
However, I will bring this recommenda-
tion to the attention of people involved
in continuing education, and I will do my
best to encourage direct personal contact
between professionals and self-help
groups.

On extending knowledge of self-help to
other professions such as law enforce-
ment, it is not always easy for the Sur-
geon General to step over the boundaries
between health and other domains, but it
can be done and I am not new to it. My
work on violence and sexual abuse of chil-
dren has crossed the borders between the
Department of Health and Human Serv-
ices and the Department of Justice and
has reached down to the level of police
and juvenile courts. I will use every
opportunity to bring your message to peo-
ple these other fields.

Recommendation 15-develop and in-
fluence public policy through advocacy,
coalition building, and networking--I
think has been covered in everything I
have said so far.

Recommendation N-increase Fed-
eral, State, local, and private funding for
self-help groups and activities-deals with
economics. I recognize the need for
increased funds, but I must tell you that
I have no budgetary authority. However,
I do have the power of moral suasion. If
that were not so, we would not be meet-
ing here. I will do what I can, but I think
increasing the level of funding is based on
performance and high visibility over time.
I pledge to do everything I can, inside and
outside the Federal Government and
including the private sector and founda-
tions, to increase funding for self-help
groups and their activities.

Those are my responses to your recom-

37


mendations. Let me add that I will seek
to establish a national toll-free number
with TDD voice to provide referral infor-
mation on self-help groups and State and
local self-help clearinghouses. I am also
willing to help develop and deliver up to
three public service announcements on
self-help originating from the Office of
the Surgeon General during the next year,
and I will be looking for you to be help-
ful in that. And I will promote an aware-
ness of self-help in ah my dealings with
professional associations, government
agencies, and the private sector.

I want you to report progress to me as
it develops, through Heddy Hubbard in
the Health Resources and Services
Administration, and I will see that you are
periodically informed of the progress we
have at our end. Through the Office of
Intergovernmental Affairs, a part of the
Department of Health and Human Serv-
ices, I will see that everything we have dis-
cussed here is made available to the State,
territorial, and municipal health officers.

A self-help coordinating committee
representing appropriate Public Health
Service agencies is also on my agenda,
and you yourselves may want to seek a
way to become a more formal body to
meet and deal that group. In the past, I.
have been able to help groups such as
yours find funds to organize and seek a
5tMC3 tax exemption. Though I cannot
promise a positive result, I will do the best
I can in the next budgetary year to find
funds for you if you decide you want to
become a more formal organization, so
you out there can have representation
with us in here.

In conclusion, I trust that you under-
stand the extraordinary complexity of the
proposals and strategies you have recom-
mended. You know where my heart is in
this matter. Though I promise you abso-
lutely nothing about eventual outcomes,
because I can't, I pledge my best efforts
to achieve the worthy goals you seek.

Tlmnk you all for coming.

CLOSING REMARKS

Mark Mayeda

Dr. Koop's words are a great en-
couragement to all who are involved in
self-help and mutual help. It is important
for us to realize, however, that the task
ahead is mainly our responsibility and
that we ourselves must follow up on the
recommendations we have made and not
simply look for the Surgeon General to
do it all for us.

Something else we all need to remem-

ber is that self-help and mutual help are
not limited to health issues. It is not just
groups of people with particular diseases
or disabilities getting together and help-
ing each other. It goes beyond that. It is
a many-faceted movement whose central
feature is people empowering themselves
and each other to deal with all the
challenges they encounter throughout
their lives.

38


        APPENDIX A

PREWORKSHOP A-

Background Readings Supplied to
    Participants

Before the workshop, the planning
committee's subcommittee on issues
development sent participants selected
background readings to give them a com-
mon knowledge base. The materials dealt
with a wide range of issues, some of them
controversial, that surfaced during a
preworkshop survey of key informants,
callers to self-help clearinghouses, and
care providers. As a service to interested
readers, the materials and their sources
are listed here.

Executive Summary: Report to the
Steering Committee for the Surgeon
General's Workshop on Self-Help and
Public Health. This summary of the
results of the pre-workshop data collec-
tion activities is available from the Self-
Help Division of Ambulatory Care and
Health Promotion, American Hospital
Association, 840 N. Lake Shore Drive,
Chicago, IL 60611 ($0.85 and self-
addressed 9 x 12 envelope.)

Plain Talk About Mutual Help
Groups. Published by the Alcohol, Drug
Abuse, and Mental Health Administra-
tion, Rockville, MD 20857.

Composite of the Properties of Vari-
ous Types of Self-Help Organizations.
Table Al from Powell, Thomas J., Self-
Help Organizations and Professional
Practice. Silver Spring, MD: National
Association of Social Workers, 1987, pp.
319-323.

Self-Help Mutual Aid Groups: A
Different Helping Paradigm? by Bork-
man, T. Prepared for the Surgeon
General's Workshop on Self-Help and
Public Health, July 1987. Single copies
available from Thomasina Borkman,
Department of Sociology, George Mason
University, 4400 University Drive, Fair-
fax, VA 22030 (stamped, self-addressed
envelope).

"Explorations in Self-Help and Mutual
Aid." Excerpt from Proceedings of the
Self-Help Exploratory Workshop (Bor-
man, L., ed.) held in Chicago June 9-12,
1974. Describes a self-helper's experiences
in establishing a committee to combat
Huntington's disease. Available from the
Self-Help Center, 1600 Dodge Ave., Suite
S-122, Evanston, IL 60201 ($0.45 postage
and a self-addressed envelope).

"Development of a Bereaved Parents
Group," by Davidson, Harriet. In: Sew
Help Groups for Coping with O&is (Lie-
berman, M.A. et al., eds.). Jossey-Bass,
1979, pp. 804.

"Self-Help Groups in Western Society:
History and Prospects," by Katz, A., and
Bender, E.,  Journal of Applied
Behavioral Science 12:3, 265-282, 1976
(special issue on self-help groups).

"Selected Highlights of Research on
Effectiveness of Self-Help Groups,`* by
Medvene, L. Unpublished paper, 1987,

39


revised. Available from the California
Self-Help Center, 2349 Franz Ha&
University of California Los Angeles, 405
Hilgard Avenue, Los Angeles, CA 90024.

"Sharing Caring," excerpts from a
communications kit developed by the
American Hospital Association to assist
hospitals in their involvement with self-
help groups, 187. Ordering information:
Division of Ambulatory Care and Health
Promotion, American Hospital Associa-
tion, 840 Lake Shore Drive, Chicago, IL
60611.

A Survey of Self-Help Clearinghouses
in North America, Wollert, R. Unpub-
lished paper, 1987. Write to Richard
Wollert, Department of Psychology,

University of Saskatchewan, Saskatoon,
Saskatchewan S7N OWO, Canada.

Self-Help Groups: The Next Fifteen
Years, Goodman, G. and Jacobs, M.
Unpublished paper, 1987. Single copies of
the original paper available from the
California Self-Help Center, 2349 Franz
Hall, University of California Los
Angeles, 405 Hilgard Avenue, Los
Angeles, CA 90024. A revised version
titled "Psychology and Self-Help Groups:
Predictions on a Partnership" is in press
(American Psychologist).

Achieving Health for Ail-A Frame-
work for Health Promotion. Report pub-
lished by the Canadian Ministry of
National Health and Welfare, 1986.


                APPENDM B

SUGGESTED STRATEGIES FOR IMPLEMENTING

THE WORKSHOP RECOMMENDATIONS

Development of
Implementation Strategies

After the 16 most favored recommen-
dations were selected by the workshop, a
set of possible strategies for implement-
ing them were developed in smaIl work-
ing groups. The goal was to consider steps
and tasks that might be appropriate and
useful in achieving the aims of each of the
recommendations. It is important to note
that there was not time for the either the
implementation work groups or the work-
shop as a whole to develop consensus on
specific strategies. Indeed, many sug-
gested strategies that emerged in the dis-
cussions evoked disagreement among
workshop participants. It was further
recognized that the Surgeon General may
not have specific authority to take certain
actions. Thus the implementation strate-
gies presented below cannot be regarded
as prescriptions, but only as suggestions
and ideas that came out of group discus-
sions at the workshop. Finally, many of
the suggested strategies were not directed
to the Surgeon General but to the self-
help movement itself.

Recommendation No. 1: Develop, fund,
and support a proactive national centrai-
ized information center for referraal to
existing self-help groups and clearing-
houses and for a&stance in the forma-
tion of new groups.

It was suggested that a planning group
for this center be appointed and that it

include substantial representation by self-
hei@ers from a broad-based constituency
7?u?planning group would akst in evalu-
ating needs and resources in the self-help
area and in developing and implementing
a plan for a national self-help informa-
tion center.

Recommendation No. 2: Increase the
effectiveness of self-help groups by
faciiitkzting communication among groups
and disseminating succeqfui models for
self-heip.

Throughout the workshop there was
strong sentiment for developing commu-
nication channels among self-help groups
as well as developing educational
materials on self-help for professionals.
A suggestion that came out of one of the
strategy groups was a national symposium
or a series of regional symposiums on the
development of partnerships between self-
helpers and professionals. IA addition to
self-helpers and health professionals, par-
ticipants would include corporations and
health care organizations.

Another suggestion was to encourage
the publication of articles on self-help in
health professions journals, especially
articles written by self-helpers and by
professionals involved in self-help activi-
ties. Workshops and symposiums for
sharing of information among self-help
groups, as well as establishment of a self-
help journal, were also suggested as ways
to facilitate communication among self-
helpers.

41


Several workshop participants empha-
sized the importance of identifying suc-
cessful models for self-help and dis-
seminating knowledge of those models to
others in the self-help movement. It was
suggested that systematic studies, perhaps
on a national level, could clarify the
processes that determine either success or
failure in local self-help groups and
national self-help organizations.

Recommendation No. 3: Incorporate self-
help concepts into the policy and practice
of governmental and nongovernmental
organizations, including health care
providers.

Among the suggestions for implement-
ing this recommendation were (1) a Sur-
geon General's position paper defining
self-help and describing its benefits to
public health; (2) encouraging conferences
among relevant Federal agencies to con-
sider ways of enhancing the partnership
between the self-help movement and the
health care delivery system; (3) preparing
publications on barriers and facilitators to
partnership between self-helpers and
health care provider partnership, for dis-
semination to organizations providing
formal health care; (4) giving public
recognition to exemplary models of part-
nership between self-help groups and for-
mal health organizations; (5) increasing
awareness about and support for the self-
help/public health partnership among
selected officials; and (6) including self-
help component in appropriate requests
for proposals.

Other suggestions included encourag-
ing major associations of health care
providers to develop policies to encourage
partnership between self-help and public
health. It was suggested that the Surgeon
General could help in this effort by con-
tacting associations of health care
providers, professional schools, founda-
tions, and corporations, as well as elected

officials and State health departments. It
was recognized that the Surgeon General
would need the support of health profes-
sionals, self-help groups, and self-help
clearinghouses in such efforts.

Fiiy, it was suggested that partner-
ship between self-help and public health
be included in the formulation of national
health goals for the year 2000.

Recommendation No. 4: Establish a
structure within the Public Health Serv-
ice for the promotion and development
of self-help.

Suggestions for implementing this
recommendation included creation of a
Federal office, perhaps in the Surgeon
General's office, for coordination of self-
help activities,  with the coordinator
chosen with substantial input from self-
helpers. Another suggestion was creation
of a Federal self-help coordinating com-
mittee comprised of representatives from
appropriate Public Health Service agen-
cies, with each agency also having its own
component for promotion of self-help.

There was also a suggestion that
separate self-help coordinating commit-
tees be established in the regional offices
of the Public Health Service, with nomi-
nations for membership to regional com-
mittees generated by regional staff and
local self-help groups and clearinghouses.

Other suggestions included providing
space and support for self-help groups in
federally funded buildings, funding of
training and research grants in self-help,
inclusion of information on self-help
groups and clearinghouses in Federal pub-
lications pertaining to health, and partic-
ipation of self-help representatives in
future Surgeon General's conferences.

Recommendation No. 5: Develop mul-
timedia campaigns aimed at the public,
human services professionals, and serf-
helpers.

42


There was a suggestion that a mass
media campaign on self-help be initiated,
focused broadly on self-help rather than
on specific problems or groups, and that
the campaign be developed in collabora-
tion with an advisory committee of self-
help group participants, human services
professionals involved,,' with self-help
groups, and other interested parties.
Among the suggested features of such a
campaign were video endorsements of
self-help principles and practices by pres-
tigious officeholders such as the President
of the United States and the Surgeon
General.

Other suggestions included White
House sponsorship of an armual awards
ceremony to honor outstanding contribu-
tors to the field of self-help, production
of a multi-authored book about self-help
for the general public, development of a
speakers bureau, education of media
professionals about self-help groups, cre-
ation of special telephone directory list-
ings of self-help organizations and
clearinghouses, designation of a Day,
Week, Month, or Year of Self-Help, and
encouraging health maintenance organi-
zations and health insurers to communi-
cate information about self-help services
to their members.

There were also suggestions that
producers of television shows with a
human services theme be encouraged to
provide the telephone numbers of self-
help groups or clearinghouses that offer
services relevant to the theme of the pro-
gram, that professional health organiza-
tions include promotional messages for
self-help in their journals, that an audio-
tape seminar be developed to train self-
help groups in public relations skills, and
that local libraries collect publications
from self-help organizations and maintain
reference directories of mutual help
groups.

Recommendation No. 6: Support coi-
laborative research and demonstration
projects using methodologies appropriate
to self-help group approaches and values.

There was a suggestion that it might be
appropriate to have an organization
within the National Institutes of Health,
or perhaps in other Federal agencies, to
foster and conduct research and demon-
stration projects on self-help and mutual
help. It was felt that review committees
for the evaluation of research proposals
should include members who understand
self-help and mutual help principles.
Another suggestion was that conferences
be convened involving Federal granting
agencies, foundations, other potential
funders, self- and mutual help organiza-
tions, and individual researchers to
develop a research agenda that includes
research methodologies appropriate for
the study of self-help activities.

43

Several participants at the workshop
recognized that self-help groups them-
selves need to develop an understanding
of the importance of research: what it can
do directly for the groups, its usefulness
for explaining the self-help philosophy
and approach to a wider audience, the
ability of involvement in research to
influence professionals and develop future
support, and the potential of research to
provide concrete fmancial support to
groups.

Recommendation No. 7: Develop
m&am&w for linking self-help mourn
and the formal setvim delivery xwtem as
equal partners, giving special considera-
tion to programs for special populations.

A suggestion that emerged from discus-
sion was creation of a permanent com-
mission to guide national policy on link-
ages between self-help groups and formal
delivery systems for health and human
services. The membership of the national


commission would include members of
self-help organizations, professionals in
the delivery system, and management per-
sonnel.

A suggested mechanism to promote
linkages, which some felt might be
encouraged by the Surgeon General, was
periodic conferences of self-helpers,
health professionals, and health system
managers. Suggestions included annual
regional conferences of representatives of
these constituencies in administrative
regions of the U.S. Department of Health
and Human Services, annual national
conferences of these same constituencies,
and an international conference to be held
every three years.

Another suggestion that emerged from
discussion of this recommendation was
that the U.S. Department of Health and
Human Services establish a toll-free tele-
phone service with TDD voice capability
to provide information and referral for
individuals seeking self-help information,
including consumers, self-help groups,
self-help clearinghouses, and profes-
sionals. (In his response to the recommen-
dations, Surgeon General Koop said he
would endeavor to carry out this sugges-
tion.) It was also suggested that the De-
partment of Health and Human Services
provide a focal point for collecting,
abstracting, and disseminating self-help
research findings and results of demon-
stration projects, as well as proposals for
research in the self-help area.

Suggested incentives for more linkages
between self-help groups and the health
care delivery system included continuing
education credits for professionaIs at
meetings that systematically involve self-
helpers in conferences, as well contacts by
the Surgeon General with professional
organizations to point out the value of
linkages between the formal health care
delivery system and self-help groups. It

was pointed out, however, that self-
helpers themselves should also take the
initiative in encouraging linkages between
professionals and self-help groups.

Recommendation No. 8: Develop, pro-
mote, and incorporate mechanisms to
educate primary and secondary school
children about self-help through educa-
tion and health care delivery.

This recommendation reflected the
workshop's belief that primary and secon-
dary school children need to know about
self-help. There was also awareness,
however, that a valid self-help program
must originate among individuals who
share a particular problem or need, and
that self-help programs instituted by
school authorities as part of a curriculum
`would contradict the voluntary coming
together for mutual assistance that is at
the core of the self-help philosophy. It
was felt, however, that much can be done
to raise awareness about self-help among
students, school personnel, and parents.

Several suggested strategies came out of
the discussion of this recommendation.
One was that the visibility and credibility
of self-help at this level could be enhanced
by public endorsements by the Surgeon
General, the media, celebrities, govem-
ment agencies, professional organizations,
and self-helpers themselves. The aim of
such strategies would be to help school
personnel and parents understand and
appreciate the benefits self-help activities
can bring to students from kindergarten
through high school. It was recognized,
however, that self-help materials directed
to children should be sensitive to their
diversity. It was felt that materials should
emphasize the value of peer support and
mutual help, of being good friends and
neighbors,  and should always be
appropriate for the age group being
addressed. Suggested avenues for dis-

44


seminating self-help materials and infor-
mation included clearinghouses, youth
agencies, United Way organizations,
libraries, schools, school speaker bureaus,
community charitable organizations, par-
ent advocacy groups, and parents and
teachers associations.

There was recognition that marketing
strategies need to be developed to empha-
size the value of self-help in ways that are
understandable to school boards, prin-
cipals, teachers, students, school nurses,
vocational and disability counselors. It
was also recognized that these efforts
would need to be continuous and would
require the participation of self-help
groups and regional and national self-help
clearinghouses.

Recommendation No. 9: Establish, coor-
dinate, and strengthen self-help clearing-
houses and other networking resources at
national, State, and local levels, with self-
helpers having equal involvement in
governance and implementation.

Many workshop participants saw a
need to strengthen self-help clearing-
houses and other networking resources at
national, state, and local levels. They also
felt that guidelines were needed to ensure
that self-helpers are involved equally in
the governance and implementation of
self-help clearinghouse activities, includ-
ing mission statements, organization,
evaluation, accountabiity, responsibility,
ethics, and standards.

Other suggestions included the drafting
of a generic grant proposal to guide self-
help organizations lacking proposal-
writing experience in seeking funds from
national, State, and local grant sources,
a task that some felt would be appropri-
ate for International Network of Mutual
Help Centers.

It was also suggested that appropria-
tions from Congress be sought to provide

matching funds to States for the establish-
ment and perhaps the maintenance of
self-help clearinghouses, and that a task
force of self-helpers and organizations
such as the American Hospital Associa-
tion be formed to develop financial
resources for strengthening self-help net-
works.

Recommendation No. 10: Establish a
national center or institute to fund, coor-
dinate, and facilitate research, training,
and dissemination of information on
self-help.

There was support for the idea of creat-
ing a nonprofit organization to develop
and implement ideas that emerged from
the workshop discussions. There was a
suggestion, for example, that the Work-
shop planning committee appoint a steer-
ing committee to explore the feasibility of
a national self-help center to continue
what had been initiated at the workshop.
The center, which might be housed either
alone or in a university setting, would
have majority representation by persons
from self-help organizations. One of its
early responsibilities would raising seed
funds to further its future development
into an organization that could further the
broad aims of the self-help movement. A
further responsibility would be coordinat-
ing information from existing clearing-
houses and promoting the expansion of
the self-help clearinghouse system to all
States, not competing with existing clear-
inghouses.

Other suggested functions for the
national center included: (1) identifying
public and private funding sources for
self-help groups across the Nation,
promoting self-help through survey
mechanisms; (2) identifying models of
collaboration between self-help groups
and public and private agencies and dis-

. .

.wmmamg information of the factors that

45


account for their success; (3) developing
pilot projects to demonstrate the need and
effectiveness of self-help groups; (4) de-
veloping policy on issues that affect self-
help groups; (5) as capability develops,
serving as a funding conduit for basic and
applied research on self-help issues that
affect all self-help groups; (6) developing
networks among self-help groups with
similar interests across the Nation; (7)
developing training programs for profes-
sionals and self-helpers; and (8) urging the
inclusion of self-help components in
research proposals solicited by Federal
and private granting agencies.

Recommendation No. 11: Channel
resources for self-help into underserved
areas and populations such as minorities,
rural areas, IowGncome people, the aged,
people with disabilities, alternative family
groupings, the homeless, and youth.

Some workshop participants were con-
cerned that existing definitions of under-
served areas and populations may be
evcluding some who need help, and it was
suggested that existing Federai definitions
of minority and undersetved populations
be reviewed to identify underserved areas
and populations not included in existing
definitions. There was sentiment fmoring
a study to determine the existence of such
excluded groups and kientifv any self-help
mechankns they may have developed. It
was ako suggested that culturally sensi-
tive self-help components be developed in
programs for all underserved populations.

Recommendation No. 12: Develop and
advocate national policies that recognize
the validity and role of self-help groups
in the full age spectrum of American
society.

Workshop participants strongly felt
that self-help should be a public health
matter of high priority and that the valid-
ity of self-help and mutual help should be

reflected in public policy. There was insis-
tence, however, that the autonomy of
self-help groups, which is one of their core
features and essential to their success, be
respected. Many participants felt that
public policy should focus on goals
related to the deveIopment of a banier-
free society, and that self-help is crucial
for achieving that end. A continuing
focus within the Office of the Surgeon
General on the roles of self-help in pub-
lic health was considered essential by most
participants. They also felt that partici-
pation by representatives of self-help
organizations in shaping public health
policies and objectives is essential.
There was a suggestion that an Office
for Self-Help be established in the Depart-
ment of Health and Human Services to
provide liaison with self-help organiza-
tions and public health programs, spon-
sor self-help meetings and conferences,
influence funding for research programs,
and coordinate access and linkage
between self-help groups and public
health programs.

It was also suggested that ad hoc inter-
departmental and interagency task forces
with self-help group representation be
established to influence policy, funding,
programming, and program evaluation in
such health issues as "orphan" diseases,
low-incidence diseases, problems of the
aged and the homeless, financing, insur-
ance, and third-party reimbursements.

Recommendation No. 13: Increase
minor& leadership in the self-help move
ment and enhance the sensitivity of self-
help organizers and groups to culturally
diverse populations.

Workshop participants recognized that
self-help groups are not always suffi-
ciently sensitive to the special needs of
minority groups and that minorities need
greater representation in the leadership of

46


the self-help movement. It was also felt
that many existing Federal programs
could be enhanced by the inclusion of
minority group leaders from self-help
organizations, and that the influence of
the Surgeon General might be helpful in
achieving this goal.

Suggestions to implement recommen-
dation 13 included holding a national con-
ference to deal with minority self-help
issues and enhance the relationships of
minorities with human services agencies,
self-help organizations, and other volun-
tary associations. A number of resources
in both the public and private sectors were
suggested as potential underwriters of
such a conference. Other suggestions
included establishment of incentives, such
as a national fellowship program for
minority leaders and a minority technical
assistance networks, to promote the con-
cept of self-help within minority commu-
nities and identify leaders within those
communities.

Development of outreach and educa-
tion programs on self-help for minorities
at the community level was also sug-
gested. It was emphasized that bodies
established to carry out these programs
should include representatives of the tar-
get communities and reflect the compo-
sition of those communities.

Recommendation No. 14: Incorporate
information and experiential knowledge
about self-help in the training and prac-
tices of professionals.

Workshop participants generahy con-
sidered this recommendation as one of the
most crucial for developing effective part-
nerships between self-help and mutual
help groups and the formal health care
delivery system. Many participants felt
that the influence of the Surgeon General
could be very helpful in increasing aware-
ness of self-help principles in the health

and human services professions, includ-
ing students preparing for careers in those
professions. There was considerable
agreement that such training would be
greatly enhanced by involving self-helpers
who could share experiential knowledge
of self-help in relation to their own par-
ticular health problems.

It also was felt that people already in
the health professions need to know more
about the potential of self-help groups to
benefit their patients, and again it was
suggested that encouragement by the Sur-
geon General could be helpful in bring-
ing about the needed changes.

Recommendation No. 15: Develop and
influence public policy through net work-
ing, coalition-building, and advocacy.

There was sentiment favoring a study
of self-help clearinghouses to understand
their activities and to publicize those that
may benefit self help groups and their
members. Participants felt that such
studies could increase the ability of
clearinghouses to strengthen self-help
groups' ability to organize, develop refer-
ral and recruitment systems, form net-
works, develop advocacy programs, and
build coalitions. Such studies were also
perceived a helpful for developing better
patterns for representation of self-help
groups in the operation of these agencies.
It was also suggested that international
and regional meetings of self-help group
leaders and activists be conducted to
develop links and networks among groups
with similar constituencies, conditions.
Some participants also felt that the Sur-
geon General could be instrumental in
arranging meetings of self-help group
leaders and national organizations of
professionals and human service
providers.

Another suggestion was development
and funding of an Independent National


Council on Self-Help modeled after the
National Center on the Handicapped.
This effort, for which Federal funds
might be solicited, would involve the
efforts of self-help advocates and national
self-help groups. Here, too, participants
suggested that the Surgeon General's
office could play a helpful role.

There were also suggestions favoring
ongoing training in advocacy skills for
self-help groups, including distribution of
information on advocacy skills through
newsletters of self-help groups and
clearinghouses and convening of local
conference5 for advocacy training for self-
helpers in cooperation with clearinghouses
and self-help groups.

A White House Conference on Self-
Help was suggested as a fitting way to
inaugurate an International Year of Self-
Help and creation of a National Council
on Self-Help.

Some participants urged doing away
with the prohibition of advocacy by some
nonprofit organizations, saying that self-
help groups and other nonprofit organi-
zations should be allowed to influence
public policy.

Other suggestions favored the develop
ment of public and private sector alliances
in self-help group operations and fund-
ing; formation of links between self-help
groups and other citizen organizations
around specific issues; development of a
national newsletter for self-help groups;
development of ongoing coalitions among
local, State, regional, and national self-
help groups; and dissemination of the
workshop's recommendations by the Sur-
geon General, with encouragement of
their implementation.

Recommendation No. 16: Increase F&i-
eml, State, local, and private funding for
self-help groups and activities.
Smce funding is a chronic problem for

many self-help organizations, several sug-
gestions on how to alleviate it emerged
from workshop discussions. One was to
train self-help leaders in ~grantsmanship in
order to increase the chances of funding
for self-help groups. Another was for
appropriate Federal agencies to establish
self-help as a generic field for priority
funding in order to counter a perceived
tendency of current funding sources to
favor funding of projects related to
specific conditions.

There was also a suggestion that
administrative procedures for contracts,
requests for proposals, and grants by
made compatible with self-help principles
to permit compliance by self-help groups.
Another suggestion was drafting model
legislation to support and enhance self-
help as part of the health services deliv-
ery system. Participants felt that this was
mainly the responsibility of self-help
groups, but that help from entities
experienced in drafting such legislation
would be needed.

Other suggestions included training and
technical assistance programs for self-help
groups in economic development and self-
sufficiency; initiation of a wrporate cam-
paign to include self-help in health pro-
motion and disease prevention efforts;
modification of third-party payment poli-
cies to allow reimbursement for partici-
pation in self-help activities; assistance of
the Surgeon General in encouraging dis-
semination of information on potential
grant funding sources to self-help organi-
zations; inclusion of self-help linkages in
existing and new health delivery and
prevention programs; and documentation
of the current funding levels for self-help
groups by Federal and State governments
and private foundations, to facilitate pru-
dent financial planning by self-help
organizations.

48


APPENDIX C

         PARTICIPANTS
IN THE SURGEON GENERAL'S WORKSHOP
ON SELF-HELP AND PUBLIC HEALTH

Complete List of Participants and
Invitees
Faye G. Abdellah, R.N., Ed.D., D.Sc.
Deputy Surgeon General
Chief Nurse Officer
U.S. Public Health Service
Parklawn Building, Room 18-67
5600 Fishers Lane
RockvilIe, MD 20857

Eugene Aronowitz, Ph.D.
Commissioner of Community
Mental Health
Department of Community

Mental Health
County of Westchester
112 East Post Road.
White Plains, NY 10601

Luis Garden Acosta
Founder and Chief Executive Officer
El Puente
211 S. 4th Street
Brooklyn, NY 11211

Rebecca S. Ashery, D.S.W.
Social Science Analyst
National Institute on Drug Abuse
12212 Greenleaf Avenue
Potomac, MD 20854

George W. Albee, Ph.D.
Professor, University of Vermont
John Dewey Hall
Burlington VT 05405

Daniel J. Anderson, Ph.D.
President Emeritus
Hazelden Foundation
P.O. Box 11
Center City, MN 55012

Byllye Y. Avery
Founder and Executive Director
National Black Women's
Health Project
1237 Gordon Street, SW
Atlanta, GA 30310

Dottie Andrews
President, Parent Care, Inc.
26392 Via Juanita
Mission Viejo, CA 92691

Billy J. Barty
Founder and Chairman
Billy Barty Foundation for
Little People, Inc.
10954 Moorpark Street
North Hollywood, CA 91602

Katherine L. Armstrong            Michael Beachler
Health Programs Manager          The Robert Wood Johnson
Bank of America                 Foundation
P.O. Box 37,600               P.O. Box 2316
San Francisco, CA 94137         Princeton, NJ 08540-2316

49


Lucy C. Biggs
Acting Deputy Director
Office of Policy Planning and
Legislation
U.S. Department of Health and
Human Services
Room 308E
200 Independence Avenue SW
Washington, DC 20201

Arlene Bohnen
Emotions Anonymous
1665 Prosperity Road
St. Paul, MN 55106

Thomasina J. Borkman, Ph.D.
Associate Professor
Department of Sociology
George Mason University
Fairfax, VA 22030

Jacqueline Bowles, M.D.
Senior Science Advisor
Office of Minority Health
Room 118F
200 Independence Avenue, S.W.
Washington, DC 20201

Jeanne H. Bradner
Director
Governor's Office of Voluntary
Action
100 West Randolph, 16th Floor
Chicago, IL 60601

Ronald C. Brand
Project Coordinator, Consultant
Minnesota Mutual Help
Resource Center
Wilder Foundation
c/o Community Care Unit
919 Lafond Avenue
St. Paul, MN 55105

Ethel D. Briggs
National Council on the Handicapped
800 Independence Avenue, SW
Suite 814
Washington, DC 20591

50

Bruce Bronxan
Assemblyman

California State Assembly District 31
State Capitol, Room 448
Sacramento, CA 95814

Maree G. Bullock
Executive Director
W. Clement and Jessie V. Stone

Foundation

111 E. Wacker Drive, Suite 510
Chicago IL, 60601

Wiiam Burns
Deputy Director
Division of Community Assistance
Office of Substance Abuse Prevention
Alcohol, Drug Abuse, and
Mental Health Administration
5600 Fishers Lane, Room 9A-40
Rockville, MD 20857

Daphne Busby
Sisterhood of Black Single Mothers
1360 Fulton Street, Suite 423
Brooklyn, NY 11216

Fulton J. Caldwell, Jr.
Chief
Consumer Affairs
National Institute on Alcohol Abuse
and Alcoholism
Rockville, MD 20857

Francis H. Chang
Executive Director
South Cove Community Health
Center
885 Washington Street
Boston, MA 02111

Mark Chesler, Ph.D.
National President of Candlelighters
Center for Research on Social
Organizations
Department of Sociology
University of Michigan
Ann Arbor, MI 48109


Laurieann L. Chutis
M.S.W., A.C.S.W.
Director
Consultation and Education Services
Ravenswood Community Mental
Health Center
1600 West Lunt
Chicago, IL 60626

Barbara A. Cleaver
Founder and Vice-President
Mothers of AIDS Patients
2109 Middlebrook Road
Torrance, CA 90501

Joseph J. Cocozza
Executive Director
Council on Children and Families
Tower Building, 28th Floor
Empire State Plaza
Albany, NY 12223

Hamp Coley
Senior Vice-President
United Way of America
701 North Fairfax Street
Alexandria, VA 223 14

Sharron Conrow
Manager
Department of Clinical Services
Kaiser Permanente Hospitals
393 East Walnut Street
Pasadena, CA 91188

Linda Cramer
Coordinator
Riverwood Center for Self-Help
P.O. Box 547
Benton Harbor, MI 49022-5711

Kenneth L. Cunningham
Founder and President
Positive Renal Outreach Program
11 Arm Street
Peekskill, NY 10566

James E. Davies
Epilepsy Self-Help Group Services
Epilepsy Foundation of America
22 W. Monroe, Suite 1501
Chicago, IL 60603

George DeLeon
Vice President
Director of Research and Evaluation
Phoenix House Foundation
164 West 74th Street
New York, NY 10023

Debra M. DeMaio, A.C.S.W.
Hemophiliac Center of Rhode Island
Road Island Hospital
593 Eddy Street
Providence, RI 02902

Linda K. DeWolf
Director
Patients and Community Services
St. Luke's Hospital
1026 A Ave. NE
Cedar Rapids, IA 52402

Frances Jemmott-Dory
Executive Director
New York City Self-Help
Clearinghouse, Inc.
1012 8th Avenue
Brooklyn, NY 11215

Thomas A. Duke, Ph.D.
Director
Community Care Resources
Amherst H. Wilder Foundation
919 Lafond Ave.
St.Paul, MN 55105

Christine Dunkel-Schetter, Ph.D.
Assistant Professor
Psychology Department
University of California
-405 HiIgard Avenue
Los Angeles, CA 90024

51


Jack M. East
Founder and Executive Director
American Amputee Foundation, Inc.
11 Tanglewood Lane
Little Rock, AR 72202

Anita G. Eichler
Special Assistant to the Associate
Director for Special Populations
National Institute of Mental Health
5600 Fishers Lane, Room 17C-16
Rockville, MD 20857

Jean K. Elder, Ph.D.
Assistant Secretary for
Human Development Services
U.S. Department of Health and
Human Services
Room 309F
200 Independence Avenue S.W.
Washington, DC 20201

Jo E. Elliot
Director
Division of Nursing
U.S. Public Health Service
5600 Fishers Lane, Room 5C-26
Rockville, MD 20857

Jake Epp
Minister of National Health and
Welfare
Canadian Council on Social
Development
55 av. Parkdale Avenue
P.O. Box/CP 3505
Stn./succ. C
Ottawa, Ontario KlY 4Gl

Steven J. Everett
Men Overcoming Violence
Chicago Commons Association
4100 West Belmont
Chicago, IL 60641

Steven R. Fomess, Ed. D.
Professor and Program Director
Mental Retardation and
Developmental Disabilities Program
University of California
760 Westwood Plaza
Los Angeles, CA 90024

Robert B. Fox, M.B.A.
Administrator
Parkside Lodge of Mtmdelein, Inc.
National Foundation for Ileitis
and Colitis
24647 N. Highway 21
Mundelein, IL 60060

Louise G. Fradkin
President and Co-Founder
Children of Aging Parents
2761 Trenton Road
Levittown, PA 19056

Barbara J. Friesen
Director
Portland State University Research
and Training Center for
Emotionally Handicapped Youth
Portland State University
P.O. Box 751
Portland, OR 97207

Geraldine Funke, R.N., M.S.
Director
Sudden Infant Death Syndrome
Program
Division of Maternal and
Child Health
5600 Fishers Lane
Rockville, MD 20857

Anita A. GaIlegos
Associate Director
March of Dimes Birth Defects
Foundation
1111 S. Central Avenue
Glendale, CA 91204

52


Susan B. Gantz
Executive Director
Self-Care Institute, School of Nursing
George Mason University
Fairfax, VA 22030

Barbara E. GiIoth
Manager
Patient Education
American Hospital

Association

840 North Lake Shore Drive
Chicago, IL 60611

Stephen Goldston, M.D.
Center for Positive Psychiatry
Neuropsychiatric Institute
University of California
405 HiIgard Avenue
Los Angeles, CA 90024

Gerald Goodman, Ph.D.
Professor
Department of Psychology
Co-Director
California Self-Help Center
University of California
405 Hilgard Avenue
Los Angeles, CA 90024

Therese H. Goodrich
Executive Director
The Compassionate Friends, Inc.
P.O. Box 36%
Oak Brook, IL 60522-36%

Ruth H. Gordon
President
Gordshaw Professional Health and
Development Services, Inc.
301 East Riding Road
Montgomery, AL 36116

Carol A. Gortat
Fist Vice-President
Osteogenesis Imperfecta
Foundation, Inc.
2328 Noble
Springfield, IL 62704

WiIliam M. Gottheb
Executive Editor
Prevention Magazine Health Books
RodaIe Press
33 E. Minor Street
Emmaus, PA 18098

EIinor D. Hands
Member
Board of Directors
National Head Injury Foundation
Ivlheapolis Association
1809 Knox Avenue
Minneapolis, MN 55403

Elaine K. Harris
President and Founder
Sjogren's Syndrome Foundation, Inc.
29 Gateway Drive
Great Neck, NY 11021

Howie T. Harp
Coordinator
Oakland Independence
Support Center
P.O. Box 70010, Station D
Oakland, CA 946120010

William Riley Harvey
Woodbum Community Health Center
6822 Ontario Street
Springfield, VA 22152

John S. Hatakeyama
District Chief
Los Angeles County Department
of Mental Health
Asian-Pacific Counseling and
Treatment Center
3407 West Sixth Street, Suite 510
Los Angeles, CA 90020

John W. Hatch, Ph.D.
Professor
Department of Health Education
School of Public Health
University of North Carolina
Chapel HiI& NC 27514

53


Eileen G. Hasselmeyer
Associate Director for
Scieutific Review
NICHD, National Institutes of Health
8901 Paddock Lane
Potomac, MD 20854
Ruby P. Heam, Ph.D.
Vice-President
The Robert Wood Johnson
Foundation
P.O. Box 2316
Princeton, NJ 08543-23 16

Hannah L. Hedrick, Ph.D.
Director
Information Analysis and Publications
Division of A&d Health
American Medical Association
535 North Dearborn Street
Chicago, IL 60610
Betty Hepner, A.C.S.W.
Coordinator
Self-Help Group Network
710-l/2 South Avenue
Pittsburgh, PA 15221

Paget Wilson Hinch
Associate Commissioner
Administration for Children, Youth,
and Families
U.S. Department of Health
and Human Services
400 6th Street, SW, Suite 3030
Washington, DC 20201

Elizabeth J. Hahn
Health Programs Manager
Corporate Health Programs
Bank of America
180 Montgomery Street
San Francisco, CA 94137

Norma C. Horwitch
Founder and Executive Director
Volunteer Stroke Rehabilitation
Program, Inc.
960 Westwood Road
New Haven, CT 06515

54

Mary Jean Houde
Manager
National Community Relations
Seers Roebuck and Co.
Sears Tower 40-08
Chicago, IL 60684

Heddy D. Hubbard, R.N., M.P.H.
Program Analyst
Division of Maternal
and Child Health
U.S. Public Health Service
5600 Fishers Lane, Room 6-40
Rockville, MD 20857

Mary C. Huber
Coordinator
New York State Self-Help
Clearinghouse
New York State Council on
Children and Families
Coming Tower, 28th Floor
Empire State Plaza
Albany, NY 12229

Andrew J. Humm
Director of Education
Institute for Protection of
Lesbian and Gay Youth
415 West 23rd Street #I-EE
New York, NY 10011

Daryl H. Isenberg, Ph.D.
Executive Director
The Self-Help Center
1600 Dodge Avenue, Suite S-122
Evanston, IL 60201

Marion K. Jacobs, Ph.D.
Co-Director
California Self-Help Center
Psychology Department
University of California
405 HiIgard Avenue
Los Angeles, CA 90024


John Johnson
President
Board of Directors
New York City Self-Help
CIearinghouse
8854 207th Street
Queens, NY 11427

Jeffrey Jue
Director
Merced County Department Of
Mental Health
480 East 13th Street
Merced, CA 95340

June Isaacson K&s
Executive Director
Westside Center for Independent
Living, Inc.
12901 Venice Boulevard
Los Angeles, CA 90066

Alfred H. Katz, Ph.D.
Professor Emeritus
School of Public Health
University of California
405 Hilgard Avenue
Los Angeles, CA 90024

Barbara Kronman
Executive Director
SHARE, Inc.
316 West 79th Street, Room 1OE
New York, NY 10024

CeciIa K. Lam, L.C.S.W.
Director
Department of Medical Social Work
Cedars-Sinai Medical Center
8700 Beverly Boulevard
Los Angeles, CA 90048

Gii Laurie
Founder and Chairman
International PoIio Network
4502 Maryland Avenue
St. Louis, MO 63108

Kent B. Layton
President
San Diego Chapter
National Depressive and
Manic Depressive Association
130 Europa
Leucadia, CA 92024

Deborah Lee
Self-Help Group Training Project
3780 22nd Street
San Francisco, CA 94114

Madeline Lee
Executive Director
New York Foundation
369 Lexington Avenue, 21st Floor
New York, NY 10016

Ayeliffe A. Lenihan
Nurse Cons&ant
Health Resources and Services
Administration
U.S. PubIic Health Service
5600 Fishers Lane, Room 5C-14
RockviIle, MD 20857

Amye L. Leong
Founder and President
Young at Heart Arthritis
Foundation
Daniel Freeman Memorial Hospital
29936 Knoll View Drive
Pales Verdes, CA 90274

Robert F. Lepp
Program Director
Psychosocial Services
Courage Center
3915 Golden Valley Road
Golden Valley, MN 55422

Joseph J. Levin
Associate Professor
School of Public Health
University of IlIinois
P-0. Box 6998 CHS
Chicago, IL 60680

55


Morton A. Lieberman, Ph.D.
Professor of Psychiatry
Director of the Aging and
Mental Health Program
University of California
1350 7th Avenue
San Francisco, CA 94143-0848
Ruth J. Loewinsohn
Manager of Social Outreach
and Support
American Association of
Retired Persons
1909 K Street NW, Room 570
Washington, DC 20049

Beverly B. Long
Chair
Prevention Committee
National Mental Health Association
1036 Somerset Drive, NW
Atlanta, GA 30327
John F. McCarthy
Acting Regional Administrator
Office of Human Development
Services
Department of Health and
Human Services
50 United Nations Plaza, Room 455
San Francisco, CA 94102
Judith M. McFarlane, R.N., D.P.H.
College of Nursing
Texas Women's University
1130 M.D. Anderson Boulevard
Houston, TX 77030
Rita A. McGaughey
Director of External Affairs
National Easter Seal Society
2023 W. Ogden Avenue
Chicago, IL 60612
Deborah C. McKeithan
President
Handicapped Grganized Women, Inc.
Metrohna Association for the Blind
P.O. Box 35481
Charlotte, NC 28235

Elizabeth A. McKinney
Support Group Facilitator
Education and Family Support
SeNiCeS
Good Samaritan Hospital and
Medical Center
1015 N.W. 22nd Avenue
Portland, OR 97210
Wilton A. McMiUan
Director of Residence Education
Model Secondary School for the Deaf
Gahaudet University
800 Florida Avenue, N.E.
Washington, DC 20002
Edward J. Madara
Director
The Self-Help Clearinghouse of
St. Glares-Riverside Medical Center
Pocono Road
DenviIle, NJ 07834

J. Michael Magimris
Director
Office of Disease Prevention
and Health Promotion
330 C Street SW
Switzer Building, Room 2132
Washington, DC 20201
Amelia Mangay-Maglacas
World Health Organization
1211 Geneva 27
Geneva, Switzerland
Douglas K. Maguire
Director
Labor Assistance Program
Los Angeles County Federation
of Labor, AFL/C10
2130 West 9th Street, Room 105
Los Angeles, CA 90006
Carlos J.M. Martini, M.D.
Vice-President
Medical Education
American Medical Association
535 North Dearborn Street
Chicago, IL 60610

56


Mark M. Mayeda
Deputy Director
California Self-Help Center
Psychology Department
University of California
405 HiIgard Avenue
Los Angeles, CA 90024

Angela D. Mickalide, Ph.D.
Staff Coordinator
Office of Disease Prevention
and Heahh Promotion
U.S. Department of Health and
Human Services
330 C Street, SW, Room 2132
Washington, DC 20201

Leonore Miller
President
SHARE, Inc.
68-37 Yellowstone Boulevard
Forest His, NY 11375

Joyce L. Mohamoud
President
Parents Anonymous
14 Maple Avenue
Plainsboro, NJ 08536

Stephanie R. Mulkey
President
Sickle Cell Anemia Self-Help
Association
P.O. Box 5610
IngIewood, CA 90310

Maryami Napoli
Associate Director
Center for Medical Consumers
237 Thompson Street
New York, NY 10012

Edward A. Nathan
Executive Director
Zellerbach Family Fund
260 California Street, Room 1010
San Francisco, CA 94111

Kenneth Nelson
Assistant Director
California State Department of
Deveiopmental Services
111 Capitol Mail, Room 410
Sacramento, CA 95814

Gladys W. Neu
Widowed Persons Services
American Association of
Retired Persons
1313 Casa Verde
corpus clisti, TX 78411

Herbert Nickens
Director
Office of Minority Health
5600 Fishers Lane
RockviIle, MD 20857

AlIan S. Noonan
Chief
Genetic Disease Services Branch
U.S. Public Health Service
U.S. Department of Health and
Human Services
1415 Templeton Place
Rockville, MD 20852

D. Michael O'Conner, M.D.
Director
California Department of
Mental Health
1600 Ninth Street, Room 151
Sacramento, CA 95814

Joharma Padie
Evergreen Stroke Association
500 Lowmen Building
107 Cherry Road
Seattle, WA 98104

Laurence J. Platt
Medical Officer
U.S Public Health Service
Department of Health and
Human Services
50 United Nations Plaza
San Francisco, CA 94102

57


Thomas J. PowelI
Professor of Sociology
University of Michigan
Arm Arbor, MI 48109-1285

Peter L. Powers, M.D.
President
American Society of Handicapped
Physicians
3300 Providence Drive, Suite 112
Anchorage, AK 99508

Shirley V. Quarmyne
Executive Director
QUEUE-UP, Inc.
AFSCME Council #36
9060 Santa Monica Boulevard
Suite 218
Los Angeles, CA 90069

Carol A. Randolph
Founder and Executive Director
New Beginnings, Inc.
Self-Help Clearinghouse of
Greater Washington
13129 Clifton Road
Silver Spring, MD 20904

Linda A. Randolph, M.D.
Director
Office of Public Health
New York State Department
of Health
1482 Empire State Plaza
Corning Tower
Albany, NY 12237

Julian Rappaport, Ph.D.
Professor of Psychology
University of IIIinois at
Urbana-Champaign
603 East DanieIs Street
champaign, IL 61820

Susan Wu Rathbone
President
Chinese Women's Association
Chinese Immigrant Association
2610 Union Street

Denise E. Reed, M.B.A, M.P.H.
Vice President
First Health Associates
220 5th Ave.
New York, NY 10001-7708

Sylvia Rhodes, M.P.H.
Interim Chief
Nursing Services Branch
Indian Health Service
Health Resources and Services
Administration
U.S. Department of Health and
Human Services
Rockville, MD 20857

Frank Riessman, Ph.D.
Director
National Self-Help Clearinghouse
Graduate School and University
Center of New York City
33 West 42nd Street, Room 62ON
New York, NY 10036

Charles E. Rappel
Chief
Office of Prevention
California Department of
Mental Health
2340 Irving Street, Suite 108
San Francisco, CA 94122

S. Denise Rouse
Member
Board of Directors
National Black Women's
Health Project
Department of Health and
Human Services
5600 Fishers Lane, Room 7A30
Rockville, MD 20857

Jay Rudman
Administrative Director
Patient Care Services
Cedars-Sii Medical Center
8700 Beverly Boulevard, Room 2004
Los Angeles, CA 90048

58


Karen A. Shannon
Founder and National
Executive Director
SKIP, Inc.
216 Newport Drive
Severna Park, MD 21146

Marsha Arm Schubert
Council on Execptional Children
6218 Old Telegraph Road
Alexandria, VA 22310

AM Carr Sheehan
President

St. Louis Chapter
National Alliance for the Mentally Ill
P.O. Box 38, Carr Creek Road
Glencoe, MO 63038

Joyce M. Simard
Director of Activities and
social services
ARA Living Centers
15415 Katy Freeway, Suite 800
Houston, TX 77094

Richard J. Siva
Deputy Director
Administration on Aging
U.S. Department of Health and
Human Services
50 United Nations Plaza, Room 455
San Francisco, CA 94102

Doris J. Stoudenmere
Glaucoma Self-Help Group
National Society to Prevent Blindness
30 East 29th Street
New York, NY 10016

Howard E. Stone
Founder and Executive Director
Self-Help for Hard of
Hearing People, Inc.
7800 Wisconsin Avenue
Bethesda, MD 20814

PhyIIis Stubbs
Director
He&h/Head Start
Office of the Director
Division of Maternal and
Child Health
5600 Fishers Lane, Room 6-05
RockviIIe, MD 20857

Judith F. Sultan
President
VaIley Parents Support Group
5641 Tobias Avenue
Van Nuys, CA 91411

Ruth F. Tebbets, Ph.D.
Executive Director
Bay Area Self-Help CIearinghouse
Mental Health Association of
San Francisco
2398 Pine Street
San Francisco, CA 94114

Helen G. Teisher
Member
Board of Directors
National Alliance of the Mentally III
5820 Yorkshire Avenue
La Mesa, CA 92042

Marye L. Thomas, M.D.
Director
Alameda County Mental Health
services
99 5th Street, Suite 504
Oakland, CA 94607

Maria M. Vazquez
Peer Counselor
Teen Pregnancy Prevention Program
El Puente, 211 South 4th Street
Brooklyn, NY 11211

Donald M. Vickery, M.D.
President
Center for Corporate
Health Promotion
Suite 520, 1850 Centennial Park Drive
Reston, VA 22091

59


Henrietta Viiaescusa, Ed. D.
National Coahtion of Hispanic Health
and Human Services Organizations
2014 Johnston Street
Los Angeles, CA 90031

Ronald K. Wakabayashi
National Director
Japanese American Citizens League
1765 Sutter Street
San Francisco, CA 94115

Sister Ann Vivia Walton
Advisor
Ad Hoc Committtee on Self-Help
Epilepsy Foundation of America
Derham Community
520 South Warwick
St. Paul, MI 55116

Greg WeigIe
President
AlIiance of Genetics Support Groups
451 Orchard Street
Vienna, VA 22180

Theodora S. WeIIs
President
WelIs Associates
341 South Swall Drive
Beverly HilIs, CA 90211

June Werner, R.N.
Chairman
Department of Nursing
Evanston Hospital Corporation
100 Burch HaII
2650 Ridge Ave.
Evanston, IL 60201

Francine R. White
Director of Education and Training
National Association of

Community `Health Centers
1625 I Street N.W., Suite 420
Washington, DC 20006

Lee J. Wick
Director
Prevention and Early Intervention
Mt. Vernon Center for
Community Mental Health
8119 Holland Road
Alexandria, VA 22306

Charlotte WiIen
President Emeritus
CONTINUUM Alliance for Human
Development
1447 Peachtree Street N.E., Suite 521
Atlanta, GA 30309

Adina Wrobleski
Group Facilitator
Suicide Survivors Grief Group
5124 Grove Street
Minneapolis, MN 55436

Gaoly Yang
Women's Association of
Hmong and Lao, Inc.
1544 Timer Lake Road
St. Paul, MN 55117

Toni A. Young
Project Coordinator
Michigan Self-Help Clearinghouse
109 W. Michigan Avenue, Suite 900
Lansing, MI 48933

Laura P. Zeitlin
Twelve Step Program
2214 Churchill Lane
Highland Park, IL 60035

Irving K. Zola, Ph.D.
Executive Director
Boston Self-Help Center
Department of Sociology
Brandeis University
waltham, MA 02254

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