Library Collections: Document: Full Text

-*Presented at the meeting of the Citizen's Committee on the Children's Bureau's 50th Birthday, Washington, D. C. April 9, 1963.-

-**Executive Director, National Association for Retarded Children.-

The three presentations which we have just heard have brought to you in several dimensions some of the high points of the findings of the President's Panel on Mental Retardation. There is no doubt that this report constitutes a major, if not the most important, "bench mark" in the history of mental retardation in this country and I dare say the world; but we cannot afford to contemplate, in leisurely adoration, this great achievement; -- five and one-half million retarded and their families are waiting for the benefits we can derive from the work of the President's Panel. They challenge us into tangible action and it is my task here this morning to discuss some of the ways in which we must implement the Panel's recommendations and to point up some of the obstacles we will encounter in the process.

In doing so, I shall not so much refer to the Panel Report itself but rather to the products which bear testimony to the National Administration's intention to give this matter highest priority so far as federal action is concerned, namely the decisive message which the President sent to Congress on February 5th on the subject matters of mental retardation and mental illness, and the various bills which have since been introduced into Congress at the behest of the Administration to carry out specific steps set forth in the President's message.

Faced with so comprehensive a program as is contained in the Panel's report and the President's message, it is difficult to single out any one point as more important than all the others. Yet the more I have conferred with officials of public and private agencies, and with the leaders of associations for retarded children across the country, the more I become convinced that the keystone for the development of an adequate action program is effective, coordinated planning on the state level. More specifically, I refer to the coordinated planning that must be done by the state agencies responsible for the various programs envisioned by the Panel and the President's report.

In doing so, I by no means belittle the role that is now played and increasingly will have to be played by private agencies and by the more than 1,000 associations for retarded children that have come into existence during the past decade. Nor do I mean to imply that state programming will be more important than programming in the local community. There is indeed growing agreement that in the long run services to the mentally retarded must be planned and given in the local community whenever it is at all possible. The problem is how we will get to that point.

The most formidable stumbling block rests in the past which by and large identified services to the mentally retarded with institutional services and, with few exceptions, had these rendered by state agencies. There were available, to be sure, in many States educational services for the mentally retarded but they were provided only for the upper levels and even for those only on a sporadic basis. More important yet than the actual availability was the public's image of the situation: the retarded or defective child or adult belonged in an institution.

Time does not permit me to elaborate on this in the present context, but I am sure many of you are aware of instances in the most recent past when state health departments have disclaimed any concern with the physical well being of the retarded because they consider retardation a mental health problem exclusively and thus fully the responsibility of the mental health authorities. Similarly, you know of education authorities who saw services to the retarded, instructional or otherwise, as outside the sphere of the educator, a task for the welfare authorities.

The significant point is that in the past the mentally retarded, as soon as he was recognized as such, was a "displaced person," displaced from the community literally whenever possible, and figuratively otherwise -- there were no services for him or his family, and no end to the rejection he suffered. It was "up to the State" to take care of him, and Albert Deutsch has left with us a vivid picture to what extent the state's role was seen as a custodial or police function.

Of course there were some outstanding exceptions to this state of affairs but we are concerned here with broad national trends, trends which are still all too recognizeable to this present day. (For instance for those of you who feel that my reference to police function is an overstatement, let me raise the question how one would explain otherwise that right now there are still numerous States which in allowing a parent to remove his child from a state institution for the retarded for a week's vacation specifically forbid the parent to spend part of this time with his child outside the state's borders. How else could one interpret such nonsensical restrictions upon a responsible citizen and taxpayer whose child is disabled but neither delinquent nor, in his parent's care, a danger to others or himself. And one could go on enumerating many other infringements of the civil rights of the retarded and his parents by the state agencies providing institutional care.) It stands to reason that in the presence of such rigidity and restrictiveness, much of which is by no means the result of administrative whim but is laid down by statutory mandate, great difficulties will be encountered as we try to move into the dynamic free exchange between community and institutional programs, between local and state services which the Panel report foresees.

Certainly it will not be easy within our varying state structures with their complicated, already none-too-well balanced tax base, to think concretely about local communities assuming responsibility for services to the retarded. Nor should we be too eager to suggest that systems of state services, as they have slowly grown and expanded by adding here an outpatient clinic, there a foster home service working out of the institution, and somewhere else pre-commitment counseling to the families involved, supplemented by some steps in the direction of vocational rehabilitation, be exchanged for what could become a general hodgepodge of some excellent hit and some horrible miss services on the community level.

Must we not first concern ourselves with the complex problems of setting up state-wide standards and their enforcement; with supervisory and consultative services from the state to the local government administering these community services; with effective formulas for matching state and local funds; and last but not least with the appropriate choices among the state agencies for administering these functions in any one of the many new areas in which the President's program calls for the development of new services. Again let me say that I am well aware of the phenomenal progress that has been made in a few of our States during the past several years in widening out limited institutional services into the beginnings of needed community services. Still, we are concerned here with the nationwide picture and furthermore even in those progressive states leadership has come usually from just one department, resulting in incomplete and often lopsided planning and programming.

A special word needs to be said about public school services to the retarded. Here too we can and must acknowledge examples of outstanding progress, such as for instance the establishment by some outstanding school systems of special classes on the secondary school level for youngsters which in many other states are still considered totally incapable of profiting from any type of elementary schooling. Nationwide statistics will show that during the past decade the number of pupils in special classes for the retarded has more than doubled. But particularly in our context these figures can be very misleading. We are concerned here with consideration of ways and means to implement the President's program on mental retardation across the country and from that point of view the striking variations in this rate of progress are of crucial importance. There are states where special classes for retarded pupils have been initiated mainly by the larger cities, with but little activity elsewhere, whereas there are other States where the exact opposite is true - the smaller school systems have been responsive to the needs of the retarded while the larger cities hardly pay even lipservice. Equally striking differences are reflected in the attitudes of the various state education departments towards educational services to the retarded.

Obviously we cannot move into broad scale, nationwide implementation of the President's program without full participation of the public schools and with regard to them the delicate balance between home rule and state leadership constitutes a particular problem.

All of this serves to underline why at this stage of development in our services to the retarded our attention must first be directed to a thoughtful consideration of broad strategies in state-wide planning.

The provisions of the President's Program with regard to this problem of state-wide planning and of effective coordination of services is expressed in House Bill 3386, introduced by Representative Mills and presently before the ways and Means Committee, and in Senate Bill 1072 introduced by Mr. Ribicoff and now before the Committee on Finance. These bills which are identical in text propose in Section 5 that there be added to the Social Security Act a Title XVII, Grants for Planning Comprehensive Action to Combat Mental Retardation. The President's intent is clearly expressed in his message from which I quote:

"The key to the development of this comprehensive new approach toward services for the mentally retarded is twofold. First, there must be public understanding and community planning to meet all problems. Second, there must be made available a continuum of services covering the entire range of needs. States and communities need to appraise their needs and resources, review current programs, and undertake preliminary actions leading to comprehensive State and community approaches to these objectives. To stimulate public awareness and the development of comprehensive plans, I recommend legislation to establish a program of special project grants to the States for financing state reviews of needs and programs in the field of mental retardation.

"A total of $2 million is recommended for this purpose. Grants will be awarded on a selective basis to State agencies presenting acceptable proposals for this broad interdisciplinary planning activity. The purpose of these grants is to provide for every State an opportunity to begin to develop a comprehensive, integrated program to meet all the needs of the retarded."

Simple and straightforward as is this purpose, reactions from a large number of states bear testimony to the fact that the complexities and variations of state government on the one hand and the broad, multifaceted nature of mental retardation on the other hand will make the implementation of these provisions, once enacted, a difficult and undoubtedly controversial task.

Anyone who has studied broadly the problem of mental retardation realizes that it cannot be brought down to a simple, common, administrative denominator. The wish has been expressed from time to time that there should be created one state department responsible for all aspects of mental retardation. No such plan has ever come to the fore. It just is not possible to combine into one administrative entity effective consideration of "services in the fields of education, employment, rehabilitation, welfare, health, and the law" to quote the aforementioned bills.

If these bills recognize so clearly the many and so varied aspects of mental retardation, where then lies the problem to which I have alluded?

Here we come upon a most interesting complication, arriving from new policies developed in recent years with regard to federal-state relationships. The purpose of these policies is clear: the Federal Government does not wish to dictate to states how they should administratively implement federal legislation dealing with grants-in-aid to such fields as health and welfare.

In our case, however, this purpose collides with another policy of the Federal Government; that in the case of such grants-in-aid programs the State must designate a single state agency "as the sole agency for carrying out the purpose of this title," and indeed these exact words appear in both these bills in section 1703 of the proposed Title XVII. There just is not in any of the 50 States any one state agency suitable to carry out the broad mandate inherent in the above quoted section of the President's Message and subsequently included in these bills. Indeed, the trend in the States has been in recent years to separate out from large, omnibus departments discreet entities and establish them as separate, functional state departments. There have been a few exceptions to this but the trend is clear and has led to the fact that anyone concerned with planning services for the mentally retarded must deal with as many as six to eight, and in some States even more, separate departments.

This is not a new problem. It was clearly recognized by the Council of State Governments in 1958 when a Conference on Mental Retardation went on record as follows:

1. The conference, therefore, recommended that each state establish an interdepartmental agency, such as an interdepartmental committee, council or board for the joint planning and coordination of state services for the mentally retarded. This interdepartmental agency may be established by the Governor or the legislature, depending upon conditions prevailing in the state.

2. Such departments as education, mental health, health, welfare, labor, corrections, and institutions of higher education offer programs and services for the mentally retarded. Within a given State there may be other departments concerned with the mentally retarded. Within each of these departments there should be a division or bureau for services to the mentally retarded or a special consultant with specific responsibility for the development and administration of these services.

(Reference to this will be found in Volume XIII of "The Book of the States" published by the Council of State Governments.)

A few of the States have already established interdepartmental committees in the area of mental retardation which have functioned successfully over the past several years. The question has been raised, however, whether an interdepartmental committee appointed by the Governor through executive action does constitute a "State Agency" as prescribed by Section 17.03 in the proposed Title XVII. Furthermore, some of these committees, even if eligible, would not appear to be prepared administratively to administer a federal planning grant.

It is worth noting that one State, North Dakota, has enacted in March of 1963 a law creating a State coordinating committee on mental retardation. This new Statute prescribes that the committee "shall have the duty and responsibility of making or providing for such studies and surveys of the needs of retarded persons in North Dakota as it may deem necessary, and shall coordinate the activities of all state departments, divisions, agencies, and institutions having responsibilities in the field of mental retardation." Thus, North Dakota is the first State that has responded to the President's Message by a legislative enactment facilitating the proposed mental retardation planning grants.

Not all states may have an opportunity or the desire to pass such special legislation. The question then arises what pattern of procedure can be developed to reconcile what would appear to be two contradictory provisions of the aforementioned Section 17.03: the first one requires "a single state agency as the sole agency for carrying out the purposes of this Title; the second that "provision will be made to assure full consideration of all aspects of services essential to planning for comprehensive State and community action to combat mental retardation, including services in the fields of education, employment, rehabilitation, welfare, health, and the law ... ."

There is certainly a very distinct difference between the functioning of an interdepartmental or inter-agency committee convened by the Governor (or mandated by the Legislature) on which all departments are represented, on the one hand, and on the other hand a situation in which one department makes the study, merely giving other departments a chance to voice their comments and recommendations.

The emphasis that has been placed in the foregoing comments on effective coordination of the State agencies should not convey that there is no need to involve public agencies on the local level and private associations and citizen groups. With regard to the former, the question arises from where such representation would come, from the county or from the municipality, and what safeguards will be prescribed in terms of number of representatives, voting rights, etc., to "assure full consideration" to these local interests. Similar questions need to be raised with regard to voluntary services (such as privately sponsored sheltered workshops, hospitals and hospital clinics, residential facilities, day care centers, etc.).

It is interesting that neither H.R. 3386 nor S.B. 1072 specifically name voluntary associations as participants in this planning activity. This is all the more surprising since S.B. 756 and H.R. 3689 also introduced at the request of the Administration in furtherance of the President's Mental Retardation Program and dealing with construction of mental retardation facilities, specifically prescribe a State Advisory Council (for the purpose of that particular program). It sets forth that such advisory council should include "representatives of consumers of the services provided by such facilities."

Still, it would seem obvious that in the field of mental retardation one could hardly have "full consideration of all aspects of services essential to planning for comprehensive State and community action to combat mental retardation" without adequate representation from the State and Local Associations for Retarded Children.

It is not mere coincidence that in many states the effort to establish Interdepartmental Committees on Mental Retardation has been spearheaded by the state Association for Retarded Children.

I realize that I may have proceeded contrary to the wishes of your Program Chairman when I decided to use the brief time alloted me this morning to present to you not a sweeping overview of the role of public and voluntary services in prevention and treatment of mental retardation but rather a detailed review of just one key problem - that of Statewide planning.

But even so, time did not suffice to cover this one problem completely. I hope you will ascribe this to the complexity of the subject matter rather than to redundancy as the speaker's part.

In the remaining few minutes, let me point up some additional problems that need to be covered in the context of State planning and to which perhaps some attention can be given in the discussion groups:

I have stressed here the importance of an interdepartmental or interagency committee on the state level. Membership, specifically voting membership on such a body, must be reserved to especially delegated officials of these state departments. Some States, such as New York for instance, provide a guest or consultant status for invited representatives of non-governmental groups, and the recent enactment in North Dakota specifically gives this privilege to the North Dakota Association for Retarded Children.

In any case, it should be obvious that an interdepartmental committee as such cannot by and of itself carry our the program of Statewide planning proposed in the new mental retardation legislation.

Certainly a long tradition in this country has taught us the value of citizen action -- the impetus which comes from a variety of civic and professional groups banding together for planning in areas of major concern, whether as a subgroup of an overall planning body or as a separately organized council on such a subject as mental retardation.

It would take far more time than is available here this morning to develop adequately this added dimension of Statewide planning: once there is established a soundly functioning interdepartmental committee (and I have pointed up earlier the reasons why in the specific area of mental retardation I consider this a number one priority), steps must be taken to bring together that committee and the citizen planning body plus - and here comes the third dimension -- appropriate representation from local governments.

I am fully aware of the impatience most people have with what appears to be a multiplicity of committees, but I also belong to that old-fashioned group of people who feel that short cuts across that cornerstone of our democracy -- the separation of powers of the executive, judiciary and legislature -- have never benefited us in the long run. I consider as equally important the need to differentiate within our context between the functioning of an interdepartmental committee as an arm of the executive branch of government (and thus responsible to the Governor) on the one hand, and the independent citizen planning and action body on the other, with its privilege to range freely, unhampered by the Bureau of the Budget.

There is no question that a discussion of the Panel's concepts of a "continuum of services" and of a "fixed point of referral" in each community might have led us into a most stimulating discussion, one that would have reflected more adequately the richness of the content of the Panel's Report and its many specific recommendations. Certainly these recommendations cover the very subject areas to which governmental agencies and interested citizen groups in the various states must address themselves.

Still, I realize that these specific recommendations are already well known to you and well publicized in the professional and popular journals. Insufficient attention, on the other hand, has been given, it seems to me, to the basic problems of planning and organization of services on the state level. Without clear recognition of the practical implications of this problem on the desirable development of community services for the mentally retarded, we shall not realize fully in our States the total benefit of the splendid work of the President's Panel on Mental Retardation.