STATEMENT OF ELIZABETH M. BOGGS, PH. D., CHAIRMAN, NATIONAL ADVISORY COUNCIL ON SERVICES AND FACILITIES FOR THE DEVELOPMENTALLY DISABLED

Mr. Chairman, I am delighted to respond to your invitation to appear at these hearings on behalf of the NAC. The members of the National Advisory Council are predictably pleased to find that your Committee, the Administration, and the Council are in substantial agreement that the Developmental Disabilities Act should be extended without major change in direction or form.

The NAC is not formally charged with any legislative initiatives, but we did respond to Secretary Richardson's request for advice in 1972. The recommendations we submitted have been widely disseminated and a copy is on file with your Committee. I will be happy to answer any questions on that subject or about the activities of the Council.

The first meeting of the Council took place only a little over 2 years ago. We have attempted to fulfill our statutory mandates, and, in addition, to provide a forum in which some of the issues of public policy can be reviewed. Although it would appear that, in creating the Council by statute in 1970, your subcommittee intended that it be an ongoing body, that continuity is now in some jeopardy. The Federal Advisory Committee Act, which became effective in 1972, makes existence of our Council contingent on frequent renewals of our charter by the Secretary of Health, Education, and Welfare; in addition, it mandates that you as the responsible congressional committee, review the need for our existence. "Periodic review" is a principle we all espouse; however, in this situation, as in patient care, one should be sure that "active treatment" is not interrupted by default.

We are aware that there are several specific points in the proposed extending legislation about which there may be some differing views. I will be happy to try to respond to any questions you may have.

Thank you again for inviting me to appear.

Mr. ROGERS. Thank you.

Let me say, first, what about this National Advisory Council? Is it properly made up? Do you think it is constituted so it does represent the various interests involved in setting forward the needs and demands for the serving the developmentally disabled?

Dr. BOGGS. The variety of interests that impact on this field is large and the selection of 20 people who can crosscut those interests is not necessarily an easy task.

I believe that we are surprisingly representative and would be even more so if we were at full strength. We have only 15 members at the moment because the class of 1973 has gone off and replacements have not yet been appointed.

The consumer representation is quite broad. There are parents of mentally retarded children, a C.P. parent, a parent of an autistic child. There is representation from organizations such as Easter Seals and the Epilepsy Foundation, of course, so we have input from that site-even with this limited membership-which is quite good.

What we are lacking at the moment is strength in relation to the field of special education and I think the field of social services and welfare. We had some representation in that field when we were first formed but we need replacements in those areas.

Mr. ROGERS. Is there any indication when these replacements will be made?

Dr. Boggs. I know that thought has been given to this at the division level. I can't really tell you why the Secretary has not responded. Mr. ROGERS. We will make inquiry. Will the staff make note of that, that I want to know why this has not yet been filled?

Are they having to have any political clearances, as far as you know? Has that been brought to your attention?

Dr. BOGGS. I have been given to understand that it helps if one has an endorsement from the administration's party. I can't say that this

is as serious a problem as I know it has been in connection with some of the scientific councils.

Mr. ROGERS. I note your council recommends this be extended to 1978. Is there any reason why the D.D. part of this bill should be treated any differently?

Dr. BOGGS. Your bill proposes to extend all the portions you have put into this bill by 2 years. I understand your strategy of grouping the various components of the Public Health Service Act. I think there are two things that distinguish the development disability portion. I think you are trying to sort out the apples, oranges, and pears in the public health field into the areas of manpower, services, and planning and resources, respectively. In D.D. you have a pineapple that doesn't fit into any of those boxes. That is what it amounts to.

I think wherever it is convenient for you to handle Development Disability is fine, but I think its unique characteristics should be recognized. I think you know the administration has recommended extension for at least the 3 years from now.

Our concern is that this legislation, really more than any other portion of H.R. 11511 (except section 314(d), which you also provided extension for), is a State responsive program and, in order for it to work, there is a long pipeline.

The appropriations have to be made and allotted and then the States have to gear up their machinery to respond. So the effects of what we are doing here will not really be felt in the States for 12 months or so.

Since we are trying to lay on the States a system of long-range planning, it doesn't seem very reasonable to them to tell them that they have such a short tether and the act is up for renewal almost before they have gotten the results of it.

For these reasons, and because planning of this kind generally should go in approximately 5-year cycles, it would be helpful if the States did have a little more leadtime to get on with it.

I don't want to belabor this point.

Mr. ROGERS. I understand, but it is the feeling of the committee that here we are asking them to deinstitutionalize and it might be well for us to look at this in a couple of years, see what progress is being made, what is happening. There may be other changes that need to be made in 2 years.

Dr. BOGGS. Two years is exceptionally short; the customary amount has been 3 years, as you know.

Mr. ROGERS. Normally we would do 3 years but we want to get out of the cycle of having every bill come up at the same time.

Dr. Boccs. I understand that but you might put us in the 3-year cycle. The States are going to respond and do their best, but it is true, I feel, and perhaps Dr. Wiegerink will respond to this, the States have been troubled as to whether the program had the thrust and stability for the long-range pull.

Mr. ROGERS. I might say this is true throughout the health field in the past few years because of the policies of impoundment and so forth in the administration.

Dr. BoGGs. Your other legislation is administered as project grants from the Government and that machinery can be geared up a little more rapidly than the State allotments.

Mr. ROGERS. I understand that in defining the "other" development disabilities, it is a fact the Secretary has not done very much there.

Dr. BOGGS. No; he certainly has not.

Mr. ROGERS. Do you think there are any particular changes that are needed, other than what we would ask for under autism?

Dr. BOGGS. During the rest of today and tomorrow I am sure you will hear a variety of advice on this subject. I would like to suggest a guideline or two for considering these various positions.

In my opinion there is a great deal of confusion among the constituencies in HEW, even perhaps in some quarters of the Congress about the difference between an eligible person and a member of a target population.

We are dealing in welfare with eligible people, somebody who is identified by name and who is either in or not in. This is also true of rehabilitation, the Vocational Rehabilitation Act which is administered in the same agency where the Developmental Disabilities Act is administered.

I believe that is not the right way to look at Developmental Disabilities Act. Developmental Disabilities Act is designed to change the system, change the environment, to augment what is there, to improve the planning and the resource development and so forth.

As I said to someone the other day, if you could justify putting in ramps in a building only if you stood by the ramp and counted the people who went up and down it, if that was the only way you could get a cost/benefit ratio, you would spend more time in evaluating it than you would in building it.

I have a little diagram here if I could share it with you. I am sorry we don't have a viewer. This is a diagram representing a whole universe of people and within that universe a group of people who have a characteristic represented by this larger mass here, and within that group there is a smaller population that has that characteristic in a more marked degree.

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Dr. BOGGS. For example, if we were talking about sickle cell trait and sickle cell disease, this would represent the situation schematically. Then if I were to talk about the universe that has malaria, it would be somewhere out here and wouldn't intersect because those two things happen to be antipathetic.

If I were talking of two kinds of characteristics that were not related, either antipathetically or in correlation, there would be a slight overlap.

When we are talking of severe mental retardation, cerebral palsy and epilepsy, we are talking of things caused by impairment in the brain.

The causes of these disorders are very likely to be interrelated with one another. You may have some neurochemical disfunction and it can be diffuse. There is not a total correlation between these conditions but they are frequently concurrent.

For example, it is generally recognized more than half the people with any amount of cerebral palsy are likely to be mentally retarded in some degree, and if we look at the severely retarded,, we see half have seizures.

That is an overlap. It doesn't mean each equivalence.

I took these representations and laid one partial on top of the other to represent the overlap; there are 26 combinations of mild this, with severe that, and so forth, and they are represented by the overlaps in this diagram.