Dr. BOGGS. If we say we are only going to be concerned with the people who are more handicapped rather than less handicapped and we, therefore, will be concerned with the center portion of each of the groups and will also be concerned with people having two mild handicaps at the same time, then our eligible people would fall in the irregular area outlined by heavy black line. The little area in the middle. represents the universe of those who have all three characteristics in severe form that is rare.

The thought I would like to leave you with is, if you want to talk of "an eligible population," you have a boundary line you have to guard with policemen to make sure somebody doesn't get in that doesn't belong.

But if you think of this as a target population, a group you are trying to direct resources toward, and you think of yourself throwing darts at this target, your darts would tend to fall inside the circle. You could spend more time trying to hit inside the irregular area and trying to avoid hitting the white spots than it is worth.

The thing to do is throw your darts at the center of the circle and, if you benefit a few other people, that is cost beneficial and not the

reverse.

Here in the white areas, that are represented as being inside the circle, you would find people who are maybe autistic or have learning disabilities. You cannot help benefiting people in these white spaces when you are aiming resources and planning for the others, so why not make it official.

If you could think of that concept of similar need rather than thinking of who is standing at the gate making a diagnosis or taking an I.Q., it would be helpful.

Mr. ROGERS. That is very helpful.

There are two or three questions I am going to ask that you reply to indirectly.

Dr. Carter?

Mr. CARTER. Thank you, sir.

I was interested in what you said about malaria.

Dr. BOGGS. That was just intended to be an example.

Mr. CARTER. Really, the sickle cell trait was an evolutionary thing which developed as a means-well, the survival of those who were not susceptible to malaria.

The others were killed by malaria.

Dr. BOGGS. Yes.

Mr. ROGERS. Thank you for your helpful testimony.

Our next witness is Ronald Wiegerink, director of the Developmental Disabilities Technical Assistance System, and Dan Davis from the Frank Porter Graham Child Development Center, Chapel Hill, North Carolina.

We welcome you gentlemen and would be pleased to receive your statements.

STATEMENTS OF RONALD WIEGERINK, PH. D., DIRECTOR, DEVEL OPMENTAL DISABILITIES TECHNICAL ASSISTANCE SYSTEM, UNIVERSITY OF NORTH CAROLINA, AND DAN DAVIS, ASSOCIATE DIRECTOR OF ORGANIZATIONAL DEVELOPMENT, DEVELOPMENTAL DISABILITIES TECHNICAL ASSISTANCE SYSTEM, UNIVERSITY OF NORTH CAROLINA

Mr. WIEGERINK. We welcome the opportunity to be here and are pleased to speak on behalf of the role and function of the development disabilities councils.

With the enactment of the Developmental Disabilities Act of 1970 (Public Law 91-517), the Congress put forward a creative new approach to provide quality services for special populations, such as the developmentally disabled. The Congress in 1970 recognized the wide range of human service needs of the developmentally disabled citizen and the complexity of a system of State and Federal agencies responsible for providing those services. The 1970 Developmental Disabilities Act represents a departure from the bureaucratic response to special needs setting up another Government agency to provide the services. Instead, an innovative new mechanism-the State developmental disabilities council was created.

State developmental disabilities councils are not agencies of State government. State councils have an independent integrity that supercedes the services and generic agencies of State government and that allows them to exercise an overview of the quality of life of developmentally disabled citizens throughout the State. Council membership includes consumer representation, private providers of services to the developmentally disabled, as well as heads of principal State and local agencies. Two features of State councils-their independent position outside of State agencies and their membership enable them to assess service delivery, resource allocation and planning capabilities of human service agencies within a State. This overview is essential to the major council functions and activities in planning and advocacy. No other organizations or agencies are in a position to perform these functions as effectively as developmental disabilities councils.

The first thing that became apparent through our initial technical assistance needs assessment of the developmental disabilities councils was the variety of council responses the Developmental Disabilities Act has spawned. The variety is demonstrated in council staffing arrangements the staff of councils vary from two staff members up to 35 in one State. They tend to average three staff members. The size of the councils themselves vary from 11 to 45 members. The priorities and objectives of the council are different. We have included an appendix A, excerpted from the "DD/TA Needs Assessment Report" (Hall, 1973), which will give you additional demographic information regarding councils.

We have had an opportunity to witness developing trends of accountability. I would like to highlight those for you.

First, there has been a significant trend toward accountability. This is evident in the councils' development of strategies and procedures for determining and documenting the needs of the developmentally disabled. The increased utilization of population and program surveys,

case registry and tracking systems and local needs assessment efforts highlight the growing movement toward reliable models of accountability.

Second, there is a trend toward evaluation. Increasingly, councils are developing improved systems for grants review, project evaluation, and, most recently, methods for determining council effectiveness and impact evaluation.

Third, councils are placing a greater emphasis on a thorough examination of legal and human rights issues. Councils are now focusing on the legal issues inherent in case registry and client tracking systems with an eye toward protecting the rights of confidentiality for the individuals registered. Councils are also studying existing laws and regulations which place a statutory responsibility on agencies such as vocational rehabilitation and social services, to provide services to eligible developmentally disabled individuals who have been underserved in the past. This process enables the council to identify and suggest additional legislation needed to fill gaps of service delivery. For instance, new education laws that improve services to the developmentally disabled patients could be characterized as gap-filling legislation.

Fourth, there is a trend toward the development of regional or minicouncils within States for the purpose of getting closer to the grassroots of service delivery. These regional councils are designed to determine regional and local needs and priorities, to coordinate needed services, and to monitor and evaluate these services.

Fifth, there is a trend toward increased use of media and public information services, not only to disseminate information to and about the developmentally disabled, but also to use two-way systems to gain feedback information from individuals about needs and priorities.

Sixth, the councils' activities reinforce the trend toward community placement and other alternatives to institutionalization. Numerous councils are actively engaged in examining and developing community program models in group home living, early education, day care, sheltered workshops and protective services.

Seventh, there is a trend toward careful development of alternative resources for funding programs for the developmentally disabled. This includes pump priming of private funds as well as analyses and monitoring of State appropriations and Federal programs such as SSI, vocational rehabilitation and revenue sharing. Developmentaldisabilities councils have been responsible for special State allocations, and for tapping into the local-Federal revenue-sharing dollars for developmental disabilities services.

There are other trends that could be enumerated, but perhaps a few words about councils and council staff would suffice. Increasingly, the councils' activities are marked by a cross-categorical and ecumenical spirit. In our interactions with councils, rarely have we heard categorical concerns or rivalries voiced. Instead, we have been impressed that the Developmental Disabilities Act has generated a movement, a group of competent energetic individuals who are making dogged progress toward achieving quality, comprehensive, and coordinated services for our country's developmentally disabled. [Appendix A, referred to, follows:]

APPENDIX A-EXCERPT FROM "DD/TA NEEDS ASSESSMENT REPORT" (FALL 1973)

During the needs assessment meeting with representatives from the DD Councils, the DD/TA personnel had three major objectives. They undertook (1) to collect information on the characteristics of the Council, (2) to determine what "needs" technical assistance might aid the Councils in meeting, and (3) to develop the memorandum of agreement describing the services and cutcomes desired. The next three sections of this document depict the results of these activities in some detail.

The first section describes some of the operational characteristics of the Councils. This information was gathered through a questionnaire developed by the staff. (Appendix A). Usable questionnaires were collected from 42 of the 51 Councils with which the DD/TA has had interacton. The information generally is used to familiarize consultants with the operation of the Council.

In the second section a summary of the needs of the Councils and the responses by DD/TA is presented.

The third and final section covers a summary of DD/TA services. Six different service areas are described.

Description

CHARACTERISTICS OF 42 OF 51 COUNCILS

Based on questionnaires collected from 42 of 51 Planning and Advisory Councils during the DD/TA needs assessment, it became apparent that the state and territorial councils differ widely in their needs for meeting operational objectives. These differences are reflected in the economic situation of the council, its geography, its number of members, type of state agencies and affiliation and relationships with executive and legislative branches of state government. The characteristics of the councils, depicted by council representatives, demonstrate that councils vary not only in structure but also in methods of operation.

In general, councils have either been created by executive order or, in a few cases, by State legislation. Membership on the council is based on appointment by the Governor, usually in terms ranging from one to three years. In many states the Governor accepts recommendations from either the council or the State agency before making appointments, and in three states the councils have been given the power to make their own appointments without approval of the Governor. (Figure 1).

While the majority of the councils have existed since 1971, one of the councils was created as late as 1973 (Figure 2). Twenty percent of the councils indicated they had previously served as mental retardation councils. Councils range in size from 11 to 46 members, with the average membership being 25. (Figure 3).