Tentative State allocations, on per capita basis, for construction of mental retardation facilities (States ranked from highest to lowest)

Mr. COHEN. Now, Mr. Chairman, I think that I should mention that the points that have been discussed here, relate to some of the distinctions we should keep in mind between the mental health program that

Mr. Jones discussed, and the mental retardation program that I am discussing.

First, in line with what Mr. Rogers asked this morning, I think we must keep in mind that there is a very important distinction between mental illness and mental retardation, which is the basic policy consideration as to why we have constructed these two programs into two separate categories.

I would like to first dwell on that for a moment.

Mental retardation and mental illness in most instances are separate health problems. It appears that the greater part of mental illness manifests itself in young and older adults after a period of relatively normal development. Mental retardation is usually a condition resulting from developmental abnormalities that start prenatally and manifest themselves during the newborn or early childhood period. Mental illness includes problems of personality and behavior disorders especially involving the emotions. Mental retardation includes intellectual defects frequently present at birth or in early childhood. There is always a defect in intellectual function in mental retardation, but mental illness may or may not involve such a defect. If there is such an involvement it is not usually of the nature and degree found in mental retardation.

These two problems are related in that they frequently occur in the same patient, and frequently involve some of the same kinds of professional skills to diagnose or assist the patient.

On the other hand, each problem does occur independently of the other, and adequate professional skill to deal with one problem does not assure competency to deal with the other.

The ability to clearly distinguish between these problems in a given patient and deal with each appropriately is often the crux of good

care.

Now, the second factor in our thinking for the construction of these bills in somewhat separate manner is the fact that unless there is a categorical earmarking of funds for each of them separately, we believe that neither of them will receive the full support and attention in the local community and in the State that they deserve. We believe that while there are groups in each community that are interested in both problems, we should keep in mind that there are different groups interested in each of these problems in the local community.

There may be a local community mental health organization or society and there also may be a group related to mental retardation. As a matter of fact, many times you will find parents and community organizations of teachers and other groups who are interested in mental retardation while there are other groups in the community who are interested in mental health. That is fundamentally the difference between the diagnosis, and treatment of these two problems, the need for doing something in both of them, and the fact that in communities the organizations and facilities that deal with them and the community response will be handled somewhat differently. This is why we believe that these have to be looked at in these separate and specialized ways.

Now, if I could put it perhaps in another way. The problem of mental health has probably received more attention, both community and professional, over the last 100 years-let's say, since Dorothea Dix and others were instrumental in trying to get Congress to take

action in this area-while mental retardation programs have not, both nationally and communitywise, as rapidly as those in the field of mental illness.

It is for that reason, that in the mental retardation bill, we are proposing the construtcion of approximately 10 centers in which we would attempt to foster throughout the United States research and scientific and highly developed professional attention to some of the basic problems of mental retardation.

The report of the President's Panel, the Mayo Committee, on which were represented many of the outstanding experts in the United States, made this recommendation in the belief that by a rather important decentralization of activity and focusing of the key scientific and professional people in a number of centers, we might be able more rapidly to develop the basic understanding and thinking as to the prevention and cure of this more important problem.

While I should say that is the basic reason why the centers, the specialized centers in title I of this bill, are there, and that, of course, is quite a distinct feature from, let's say, the community mental health area, where there has been a good deal of research, and attention to the problems of mental health coming out of the National Institute of Mental Health over the last 15 years.

Now, with respect to the second feature in the bill, the construction of mental retardation facilities, I should make it clear that these facilities involve some important differences from the comprehensive community mental health centers that Mr. Jones discussed. The problems of dealing with the mentally retarded are not simply those that might be said to be oriented around medical problems. The problems of mental retardation of both children and adults involve the training of these children at an early age, their education, developing various work programs and recreation programs, and attempting for those that are both educable and trainable to make them productive citizens, by adjusting the needs for work to their particular capabilities. As a matter of fact, I have just returned from studying at firsthand the one in Conway, Ark., in which they are doing some interesting research which shows that the potentialities of education of these people and training is greater than we had thought in the past. And therefore a number of clinical psychologists and teachers are working in that area. And this might well be a component of a mental retardation facility that one wouldn't find in a comprehensive mental health facility, because you are dealing with a large number of children and young adults here who, if we do not incorporate these education, training, and work programs, easily may become custodial cases for the rest of their lives. And many of these children and young adults can be made into productive citizens if at an early enough age a total continuum of services is made available to adjust to their needs. So in that case the mental retardation facility is likely to involve a broad pattern of professional staff, and perhaps in total less physicians and psychiatrists in the mental retardation clinic, and more teachers and psychologists, let us say, than there would be in the staffing pattern for the community comprehensive mental health centers.

Now, that is not to say that in a great university or in some very outstanding medical complex that we might not find both of these centers together. I can well conceive that in some of the very great

universities and very great medical schools where they will have a medical school, where they will have a nursing school, where they have a rehabilitation facility, where they will have a hospital that they are getting money for under Hill-Burton, and they will always have, perhaps, a comprehensive mental health center, they might have a mental retardation research center, and they might also have a mental retardation facility, because they happen to have the complements of trained personnel and the know-how that would be, for a particular State, a very key combination of circumstances.

But that would not mean that other communities might not have just one of these or, it might, because of its beakground and experience, start with mental health in one community and mental retardation in another, in an attempt to deploy its force, in terms of the limitation of trained manpower that Mr. Rogers mentioned, in a way that it felt was most important in meeting its needs in terms of the organization of people in its communities.

It may well be that parents in a particular community are much more concerned about mental retardation, they happen to be well organized, and there may be mental retardation facility there. And in another community they might also be very well organized, there might be 10 years of work in community mental health and they might have a mental health facility, and hopefully, maybe 5 or 10 years, there may be both.

Mr. ROGERS of Florida. May I ask a question at this point.

Would you put in the record, the personnel in your mental retardation centers-I believe you said you would construct 10 in the beginning and then the personnel you would envision in your retardation facility.

Mr. COHEN. I would be glad to do that. (The material referred to follows:)

STAFFING PATTERN OF CENTERS FOR RESEARCH ON MENTAL RETARDATION AND RELATED ASPECTS OF HUMAN DEVELOPMENT

It is difficult to visualize a single staffing pattern for a mental retardation research center, as these would vary according to institution and research program area. In some cases, a center may involve primarily biological scientists working on problems of fetal-maternal metabolism, whereas, another center may focus on the behavioral and learning components of mental retardation. Other centers may combine biological and behavioral sciences and scientists. Since these research centers will be university or institutionally affiliated, teaching and service programs would also affect the form of the staffing patterns as some persons may have dual roles and joint assignments.

The problem is made more complex because some centers may be new, whereas in other cases, they may regroup, utilize, and expand parts of existing research programs and facilities.

In any event, the staff of these centers will range from 10 to 20 scientists with supporting technical and administrative staff of 30 to 50 persons. Scientists involved may be biochemists, geneticists, physiologists, speech pathologists, audiologists, psychologists, sociologists, educators, and most of the many medical specialists.

STAFFING PATTERN OF A FACILITY FOR MENTALLY RETARDED

Staffing patterns in health facilities are often subject to manpower availability and personal qualifications. Flexibility should be permitted with efforts continually being made to evaluate effectiveness of different staffing patterns.

The annual operating costs of a facility will vary from community to community depending on such factors as the number of different services and personnel

to be included, sharing of existing services, use of consultants, rent requirements, use of volunteers, etc.

The smallest facility will offer primarily diagnostic services with others increasing in size to include one or more of the following treatment services: speech and hearing training, educational training, vocational and physical rehabilitation, parent counseling and health education, and professional training programs.

In some cases, the facility may be a part of a research center with a sharing of staff, space, and equipment.

Mr. ROGERS of Florida. Just as a brief summary now, I realize you may not have all the facilities you want to put in, but what would you envision in a retardation center?

Mr. COHEN. In a retardation center, as pointed out-
Mr. ROGERS of Florida. The kind of personnel.

Mr. COHEN. The kind of personnel, yes. I think you are going to find there a very high level of professional competence. You are going to find people who can deal with microbiology and virology and pharmacology and nutrition, because they are going to be working on all these problems of the care of the mother and the child before it is born.

Mr. ROGERS of Florida. This is the research center?

Mr. COHEN. This is the research center.

Mr. ROGERS of Florida. Would this be supervised by doctors?

Mr. COHEN. Well, you think it would have to be supervised by someone who has a very high degree of professional competence, I wouldn't say it should necessarily be an M.D., but it might be a person who is a trained scientist in one or more of the fields, and most likely, most of the time, if not all of the time, it would be an M.D.

Mr. ROGERS of Florida. You can give us the specifics on it.

Mr. COHEN. Yes.

Now, I think that I should also point out to you one other important difference in this bill

Mr. ROGERS of Florida. Let me just ask you now, on the facility itself, what do you envision on the personnel?

Mr. COHEN. On the facility?

Mr. ROGERS of Florida. Just to follow that up.

Mr. COHEN. On the facility itself I would say, to again make the point as distinct from what Mr. Jones talked about, a mental retardation facility is probably going to involve more teachers and more custodial help than the professional help that is involved in the comprehensive mental health center.

Mr. ROGERS of Florida. Do you envision it more as a teaching facility than as a health facility?

Mr. COHEN. I would not say as a teaching facility, but I would say that it would not be oriented solely as a health facility, it would be oriented as a facility dealing with a totality of the problems of mental retardation, of which education and training are a very important component.

Mr. ROBERTS. Would the gentleman yield?

There is no provision in any Federal statute for your mental retardation center.

Mr. COHEN. That is correct.

Mr. ROBERTS. That is strictly up to the local people. What you are saying is that it may be that primarily the need will be for teachers