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
demystification—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 ostomies.
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

27

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 1960’s cliche: if we are
not part of the solution, we are certainly
part of the problem.
 

CHAPTER Il

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-

28

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,
  
 
  
   
 
 
 
 
   
  
   
 
  
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  

e workshop
nal process
humanistic
se used by

in its origi-
odification,
f ideas to
1e best ideas
though the
snsion, that
2 workshop
of the crea-
inging forth

are assigned
‘h of which
the compo-
hop. These
tter part of
ing specific
rship of the
health care
¥ recommen-
yy a specially
> for helping
the group,
d managing
s assisted by
ble for keep-
deliberations
‘ions.
group work-
ming session,

 

 

 

a process whose general guidelines are as
follows:

e The sky’s the limit, so don’t censor
your ideas—express them.

e Build on the ideas of others.
© Don’t judge or criticize other people’s
ideas during brainstorming.

© 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.

 

 

 

 

 

 
 

CHAPTER IV

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. 1: Develop, fund,
and support a proactive national central-
ized information center for referral to
existing self-help groups and clearing-
houses 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 existing 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

30

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.

Recommendation 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
 

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.

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

31

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 primary 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.

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 (Priority:
13). 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 dissemination 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.
 

Recommendation No. 11: 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 self-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
minority leadership in the self-help move-
ment and enhance the sensitivity of self-
help organizers and groups to culturally
diverse populations (Priority: 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.

32

Recommendation No. 14: Incorporate in-
formation and experiential knowledge
about self-help in the training and prac-
tices of professionals (Priority: Ll). 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: 11). 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.
 

CHAPTER IV

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 10-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-

33

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 find 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

 
 

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 iliness 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

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 | 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, estab-
lish 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.

1 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

habilitation 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 assistance, 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 and practice 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 govern-
mental level, but the Surgeon General is
not without influence in other sectors.

Recommendation 4—establish 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

35

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 professionals, and_ self-helpers—!
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 6—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
 

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 difficulties, perhaps in the word-
ing of grant proposal guidelines.
Recommendation 7— identify mechan-
isms for linking self-help resources and
the formal 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 8—develop, pro-
mote, and incorporate mechanisms to
educate primary and secondary school
children about self-help through educa-
tion and health care delivery. 1 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.

36

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 self-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-
sionmaking goes without saying.

Recommendation 10—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.
 

Recommendation 12—develop and
advocate for a national health policy that
recognizes the validity and the role of self-
help groups and recognizes the full age
spectrum of the American society. | 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 13—increase minor-
ity 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.

Recommendatien 14—change knowl-
edge, attitudes, and practices of health
and human service providers by provid-
ing information in farmal 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
professions whe 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-

37

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 16—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
cutside 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-
 

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 all 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
504C3 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.

Thank 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-

38

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.
 

APPENDIX A
- PRE-WORKSHOP ACTIVITIES

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.

39

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: Self-
Help Groups for Coping with Crisis (Lie-
berman, M.A. et al., eds.). Jossey-Bass,
1979, pp. 80-94.

“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
(specia] issue on self-help groups).

“Selected Highlights of Research on
Effectiveness of Self-Help Groups,’’ by
Medvene, L. Unpublished paper, 1987,
 

revised. Available from the California
Self-Help Center, 2349 Franz Hall,
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 All—A Frame-
work for Health Promotion. Report pub-
lished by the Canadian Ministry of
National Health and Welfare, 1986.
 

APPENDIX 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 small 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 central-
ized information center for referral to
existing self-help groups and clearing-
houses and for assistance in the forma-
tion of new groups.

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

41

include substantial representation by self-
helpers from a broad-based constituency.
The planning group would assist 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
facilitating communication among groups
and disseminating successful models for
self-help.

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. In 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.
 

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

42

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.

Finally, 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 self-
helpers.
 

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 annual 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.

43

Recommendation No. 6: Support col-
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.

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 financial support to
groups.

Recommendation No. 7: Develop
mechanisms for linking self-help resources
and the formal services delivery system 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, annu@! 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 professionals 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, govern-
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-
 

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, accountability, 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

45

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-
seminating information of the factors that
 

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
Tesearch 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, low-income 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
excluding some who need help, and it was
suggested that existing Federal definitions
of minority and underserved populations
be reviewed to identify underserved areas
and populations not included in existing
definitions. There was sentiment favoring
a study to determine the existence of such
excluded groups and identify any self-help
mechanisms they may have developed. It
was also 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 development of a barrier-
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
minority 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
 

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 generally 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

47

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 network-
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
conferences 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 Fed-
eral, State, local, and private funding for
self-help groups and activities.

Since 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 corporate 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.
 

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
§600 Fishers Lane

Rockville, MD 20857

Luis Garden Acosta

Founder and Chief Executive Officer

El Puente
211 S. 4th Street
Brooklyn, NY 11211

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 1!

Center City, MN 55012

Dottie Andrews

President, Parent Care, Inc.
26392 Via Juanita

Mission Viejo, CA 92691

Katherine L. Armstrong
Health Programs Manager
Bank of America

P.O. Box 37,000

San Francisco, CA 94137

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

Rebecca S. Ashery, D.S.W.
Social Science Analyst

National Institute on Drug Abuse
12212 Greenleaf Avenue
Potomac, MD 20854

Byllye Y. Avery

Founder and Executive Director

National Black Women’s
Health Project

1237 Gordon Street, SW

Atlanta, GA 30310

Billy J. Barty

Founder and Chairman

Billy Barty Foundation for
Little People, Inc.

10954 Moorpark Street

North Hollywood, CA 91602

Michael Beachler

The Robert Wood Johnson
Foundation

P.O. Box 2316

Princeton, NJ 08540-2316
 

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

Bruce Bronzan

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

William 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