A modern plan for modern services to the mentally retarded

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Title:
A modern plan for modern services to the mentally retarded
Physical Description:
10 p. : ; 22 x 10 cm.
Language:
English
Creator:
Jaslow, Robert I
Publisher:
U.S. Dept. of Health, Education, and Welfare, Social and Rehabilitation Service, Division of Mental Retardation
Place of Publication:
Arlington, Va
Publication Date:

Subjects

Subjects / Keywords:
People with mental disabilities -- Services for -- United States   ( lcsh )
Genre:
federal government publication   ( marcgt )
non-fiction   ( marcgt )

Notes

Statement of Responsibility:
Robert I. Jaslow.

Record Information

Source Institution:
University of Florida
Rights Management:
All applicable rights reserved by the source institution and holding location.
Resource Identifier:
aleph - 027982484
oclc - 52883432
System ID:
AA00013730:00001


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U.S. Department of
Health, Education, and Welfare
Social and Rehabilitation Service
Division of Mental Retardation
Arlington, Va. 22203






Quantity


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y"THE 6-POINT PROGRAM..






A Modern Plan for Modern
Services to the Mentally Retarded

INTRODUCTION
For the past 3 years, the Division of Mental
Retardation and its predecessor programs have
been seeking to help in the building of services
which will truly meet the needs of America's
6 million retarded citizens. To recite the history
of those 3 years here would be beside the point.
Suffice it to say that they have been active-and
educational.
We have, in the nature of things, put great
emphasis on planning and coordination of pro-
grams at State and local levels. And out of this
emphasis have come most of the lessons we have
learned.
We have discovered, for example, that what
we have known to exist-a severe shortage of
trained manpower-not only exists, but threatens
to get worse before it gets better.
We have found ourselves in a difficult competi-
tive position for our full share of the community
resources.
We have not found a solution to the problem
of provision of services. The generalist's approach
which is comprehensive still vies for our attention
with the specialist's higher quality but more
fragmented approach.
We have learned that development of services
for the retarded must proceed in keeping with
the general development of all personal services
in the community and yet must maintain the
identity of the mentally retarded.
Summing up our lessons learned, and perhaps
most important of all, we have discovered that
means must be found to extend services to all the
retarded with those resources which are available.
The lessons I have outlined underscore the fact
that we cannot expect, simply by developing a
number of programs for the mentally retarded
in a community, that these shiny new programs
will then automatically fit together into a dynamic
structure. It is difficult enough for the community
to plan concretely for all the needs of the retarded
in the beginning. Precise data are lacking. There
is little or no definition of function. Philosophies






change. And if planning for the present is difficult,
planning for the future is nearly impossible. Yet
it must be done. It has to be done in the full
knowledge of the difficulties involved: The finan-
cial and manpower problems, the changing mis-
sions of programs and agencies, the lack of specific
treatment and preventive programs, and the un-
certain future in which the only certainty which
exists is the certainty of change and the develop-
ment of new trends.
Planning in a vacuum is no planning at all. We
have to work with what we have. Attempts to
develop mental retardation service programs in a
vacuum can only result in isolated programs
without community understanding, backing, or
support.
It is with these factors in mind that we have
devised a model 6-point program for the proper
balance and coordination of community services.

POINT 1
OPEN EVERY GENERIC
COMMUNITY AGENCY TO THE
RETARDED INSOFAR AS
THESE AGENCIES' COMPETENCE
AND ABILITY PERMITS

A definition is in order here. By generic agency,
I am referring to any health, welfare, educational,
rehabilitative, or employment agency in the
community whose purpose is not for the specific
care of the mentally retarded. An example might
be an orthopedic clinic not specifically for the
mentally retarded, which would be considered a
specialized service in other circumstances, but
would be considered generic in our conceptual
model. Our reasoning is that if we are to provide
the quantity of care necessary, we have to consider
the fact that most retardates do not require
complex and specially trained assistance in every
situation throughout their lives.
Most retardates fit into the mildly retarded
grouping and can cope with most situations with-
out help or, at least, without the help of specialized
agencies. We should not be thinking so much of
types of retardation. Rather, our attention must
be directed to the situations which retardates are
apt to encounter. Thus, a child may be mildly






retarded yet have complex genetic problems or
learning difficulties while a far more seriously re-
tarded individual may have such comparatively
slight problems (or at least uncomplicated ones)
as a toothache or a fractured leg. Actually most
of the services the retardate needs are-or should
be-available in the community.
Moreover, it takes time for the service worker
to develop a rapport with the family of the re-
tardate, learn its strengths and weaknesses, and
know the community and its full range of services
in order to determine the most practical treat-
ment plan. These are factors which argue per-
suasively for local rather than distant care and
for care given by agencies and professionals who
already know this family.
Just as the individual cannot be split into sep-
arate parts for treatment, we are coming to the
understanding that close inter relationships which
bind the family together require that it be treated
as a unit. Thus the development and mush-
rooming of specialized agencies which isolate the
retarded individual from his family must be
carried out only after careful consideration.
There is still another factor which inhibits the
retardate from receiving the treatment he needs
in the generic agency. Too often, the mentally
retarded person is refused service because he is
identified as a retardate. Furthermore, the pres-
ence of specialized agencies available for the
retarded tends to encourage referral to them
almost automatically. Thus begins to develop a
mysterious aura of specialization supposedly re-
quired for this exotic and difficult condition. The
retardate quickly moves beyond the scope of the
generic agency regardless of his true need-a need
which most often could be supplied in the very
agency which shuts him out. This develops into
the concept of mental retardation as an all-or-
none condition rather than one with graduated
problems.
Again arguing for the greater use of generic
services is the logistical problem of distance.
Local agencies are simply easier to get to. Why
send the retardate miles from his home unneces-
sarily when by doing so we also send him away
from the service which has been treating his
family for years, which knows his family and its






problems, and which by all reasonable standards,
should be best equipped to treat him?
Today the mental health field is moving towards
family unit treatment and away from child guid-
ance and adult mental health clinics. Social
workers are moving again toward family unit
treatment, and there are strong recommenda-
tions that medical schools- should be developing
a new specialty-the family specialist-to handle
the majority of medical situations for the entire
family and act as the family's fixed point of
referral for its full complement of service. We who
are interested in the retardate should be thinking
in these same terms.

POINT 2
THE PROVISION OF
BASIC TRAINING IN MENTAL
RETARDATION FOR
EVERY HEALTH WORKER

I would go further than that and say that every
personal service worker should have such training.
This would not be so vital for such technicians as
the X-ray or laboratory worker, but is a must for
every personal service worker who offers services
in a health, welfare, educational, rehabilitative,
or employment situation.
With such training, the generic agencies would
be more easily persuaded to open their doors to
the retarded. This would greatly facilitate the
understanding needed for satisfactory case-finding,
referral, and timely intervention.
This basic knowledge would not have to be
very extensive. It should be enough to enable the
worker to know the essential concepts of retarda-
tion along with the major problems and possible
relationships. Thus he would be able to identify
most retardates or at least to refer cases for
proper identification, would be able to handle
basic questions, and could be aware of the rela-
tionship of specific services to the problems of the
individual retardate.
With the ability to make logical referral at the
appropriate time, the health worker or other per-
sonal service worker will be able to avoid passing
the retardate and his family around haphazardly






to inappropriate services, wasting usable profes-
sional time, and perhaps missing the optimal
period when intervention of the right kind would
do the most good.

POINT 3
THERE IS A NEED FOR
ROLE DEFINITION
AND CRITERIA FOR UTILIZATION
OF SPECIALIZED SERVICES,
AGENCIES, AND FACILITIES
This is another point which would broaden our
quantity of services and manpower greatly,
thereby permitting more retarded people to be
served while not subverting the manpower and
funds available to the community.
Although we must recognize the value of
generic services and agencies, we do not propose
an either-or situation in regard to generic vs.
specialized services. Both are needed for a bal-
anced program but must be properly fitted into
the overall community services structure.
One of the major problems facing the field of
planning for services to the retarded is the lack of
definition of role of the various agencies. Unless
this definition is made, it is most difficult to fit the
various service roles together into the total spec-
trum of services which alone can guarantee the
continuum of care the retarded require.
Needless to say, the confusion and loss of time
for both professionals and patients created by
this lack of definition is considerable-and far
more than we can tolerate.
Another very important factor is poor utiliza-
tion of the specialized agency or facility. Simpler
cases are not usually appropriate for the special-
ized agency. When they are referred to it, two
things happen. The agency receiving these cases
is prevented by the very volume of need from
performing its principal mission-provision of
service to the more complex or difficult case,
training, research, and demonstration of new
techniques.
In addition, the generic agency which should
be handling the simpler cases is prevented from
doing so and, as a result, may not shoulder its
responsibilities for handling even simpler levels






of care for the retarded. Thus we defeat the pur-
poses which we are trying to propagate, and the
results of evaluation of previous planning become
distorted and meaningless. Thus even future
planning for such important factors as man-
power is made useless.
It is disturbingly true that at present, only a
small percentage of our retarded population is
being provided services which are truly compre-
hensive both in variety and in time. Yet we are
committing tremendous sums of money and
numbers of people to just such programs.
In order to justify the continued presence of
these services, we must use them to a more effi-
cient end than we are currently doing. That is
why it is so pressingly important that we sort out
the missions of various kinds of services and make
certain that problems are referred to services
where they can be handled as simply as possible.
What we have been talking about in the first
three points relates primarily to quantity of serv-
ices for the retarded and to those services directly
working with the retarded. We need to be con-
cerned about quality, and the next two points
refer to this.

POINT 4
THE PLACEMENT OF A MENTAL
RETARDATION SPECIALIST,
EITHER FULL-TIME OR
PARTTIME, IN EVERY GENERIC
AGENCY OF ANY SIZE OR
SIGNIFICANCE

This accomplishes several things. First of all,
it provides better distribution of specially trained
manpower, putting professionals in positions
where they can best utilize their skills in behalf
of the greater number of retardates, thus relating
to another great problem today which is the in-
equality of levels of service in different areas
throughout the Nation.
More than that, point 4 provides a backup
service enhancing staff competency in the generic
agency. The mental retardation specialist in the
generic agency acts as a consultant and inservice






educator offering greater likelihood that the
generic community service and health worker
will accept the retarded patient. This, in turn,
contributes to the quantity of services offered in
the community, but it also can upgrade consid-
erably the quality of those services. Furthermore,
it satisfies another important problem concerned
with the information explosion and the lag in the
use of new knowledge.
It is obviously impossible for everyone to keep
up with all the new developments today. We keep
up with only those areas in which we have a
special interest. The inclusion of the mental retar-
dation specialist, either full or part time, in each
sizable generic agency thus adds a professional
with one special field of interest in which he keeps
currently informed.
Since this specialist is trained in the multi-
disciplinary approach, though not necessarily
skilled in every specialty contributing to it, he
would be expected to have some knowledge of
new developments as they relate to the other
disciplines. Thus he becomes the intake channel
for new knowledge and new techniques keeping
the quality of care at a high level, and reducing
the lag time between new knowledge and the
implementation of that knowledge.

POINT 5
WE MUST DEVELOP STANDARDS
FOR SERVICES AND TRAINING

"Standards" can have a very specific meaning.
We are talking more generally at this point. Here,
I am using the word to include those standards
established nationally by a variety of groups, and
all those established for various reasons by State
and local groups. In addition, authoritative state-
ments, guidelines, and regulations should be con-
sidered. Those to be utilized are determined by
the community when appropriate to control and
justify the expenditure of tax dollars, to help in
program evaluation, to stimulate program im-
provement, and to use in determination of the
need for continuance or modification of various
programs. Standards are a quality control factor
for the good of the community, the family, and,
most important, the patient.






This discussion has centered to date on quality
and quantity of programs. We need to say a
word for efficiency, for any discussion of a model
for services of any kind is incomplete without
consideration of this factor.

POINT 6
A COORDINATING MECHANISM
WITHIN THE COMMUNITY
IS A REQUISITE FOR BALANCED
SERVICES AS WELL AS FOR
MENTAL RETARDATION
PLANNING

The coordinating mechanism should relate to
the services existing in the community, and would
probably be utilized best if based upon a service
such as an information and referral center. Such
a center would have the added advantage of
offering a positive service to the generic or spe-
cialized agency. Thus it would be better able to
enlist the cooperation and use of its coordinative
role by existing agencies.
This would result in such needed side effects as
an agreement on terminology, bringing improved
communications, better data collection, and more
unemotional and rational planning. The coor-
dinating mechanism should be concerned with
finding and eliminating those barriers which
prevent the retarded from access to community
services.
More than that, the center should serve in the
coordination of inservice education and training
and should be a meeting ground for planning
across agency lines. This service might also be
part of a community coordinating mechanism
with a far wider role than merely mental retar-
dation. If this is to be the case, however, the
community agency should have an identifiable
subsection responsible for retardation.
The coordinating body should be concerned,
then, in bringing together all the fragments for
the continuity of services needed by the retarded,
assuring balance in the development and delivery
of services, and making sure that the retarded
get their fair share in both quantity and quality
of the services available in the community.







CONCLUSION


This, then, is our 6-point model for a com-
munity service program. Individually, these points
have been enunciated before. But that is not the
point. The six points must be considered in a
group in order to produce the various checks and
balances necessary to the development of a
balanced program.
Embodied in the whole model is the idea of
economy-a very basic concept indeed-and
vital since the amount of new knowledge available
and still developing will stretch our resources to
the bursting point. We have to recognize that in
our field of mental retardation we cannot expect
to obtain the ultimate in services when none of
the other problem areas facing the community
can do so. After all, we are not alone. Other con-
ditions find the same lag between knowledge and
implementation and have to compete for their
fair share of the financial and manpower resources.
But under the system I have suggested, we have
a fair fighting chance of obtaining our share of
available community resources for the retarded.
This fact plus the flexibility of the model enables
us to bring the retardate together with his com-
munity's resources in an equitable, adequate
manner.
We do not suggest-and for good reason-that
these six points are unyielding and not to be
adjusted. Quite the contrary. If a community
needs to put more emphasis on specialized serv-
ices and facilities, this can be done by lowering
the criteria which determine their use. If the need
is to channel more retardates into generic com-
munity agencies, we can always raise the criteria.
The coordinating mechanism can and should be
given a wide latitude in such areas as developing
communications systems for the community. All
this serves to give the community the basic con-
trol it needs to insure the best services compatible
with the total availability of services.
There is one other important point which
should be considered. We are here interested in
the problem of mental retardation-one cate-
gorical problem which requires consideration in
the total community framework. Nothing we






have said here, however, could not with modifica-
tion be applied to other categorical problems.
In this age of comprehensive care, all of us must
be thinking in terms of service to these various
categories. But we must be concerned that we do
not swing full circle. We moved from generalized
services to specialized services in order to improve
the quality of care. We achieved this improve-
ment, but we also developed a degree of frag-
mentation which is not so desirable. Now, in the
attempt to avoid fragmentation, we must be
careful not to go back to the lower quality which
generalization might bring.
We must use the elements of both systems,
providing comprehensive care without too much
decrease in quality. The great movement we are
seeing toward the neighborhood health center-
the center which will eventually become in effect,
if not in fact, a personal services center-brings
us closer to the time when health, welfare, educa-
tional, rehabilitative, and other services will be
recognized as closely intertwined and when serv-
ices to the family unit in all these areas will be
closely coordinated.
What we really are dealing with, it seems to
me, is a system-or a model of a system-in
which, already, communities are beginning to
participate. Many communities today have one
or more elements of the 6-point model I have
discussed. As the complete models are put together
in more and more communities, we will indeed be
reaching the day when the retarded member of
our society does in fact receive something ap-
proaching his fair share of the services he so
desperately needs.











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