HOW ADEQUATE IS THE PROGRAM OF RESEARCH ON BLINDNESS AND VISUAL DEFECTS?

Mr. Chairman, there is a growing movement in the 89th Congress to establish, within the National Institutes of Health system, a separate and independent agency to conduct research into the causes of blindness and lesser visual impairments.

We of the National Federation of the Blind add our voice to those of others in unqualified support of the National Eye Institute movement.

Statistics may be cited to indicate the seriousness of the visual defects problem in America

About 400,000 persons have 10 percent vision or less;

More than one million persons are unable to read regular newspaper print, even with the help of glasses;

Nearly 90 million persons have, to some degree, impaired eyesight; About 30,000 adults and children become blind each year, and, most important of all—

Eighty percent of all blindness is the result of diseases whose causes are not known to science!

Then there are the dollar cost statistics

The tax-paid expense of providing public aid to nearly 100,000 needy blind persons;

The special facilities, teachers, books, and materials needed in the education of more than 20,000 elementary and secondary school-attending blind children;

The centers and facilities providing adjustment help and services to the newly blind;

The vocational rehabilitation agencies, programs, and training facilities to provide occupational retraining and job placement help to the employable blind;

The tax-provided braille and recorded books for the blind, the buildings to house them, the personnel to distribute them!

But we, blind people, members of the National Federation of the Blind, do not rely upon prevalence of visual impairment statistics, nor upon the dollar costs that are incurred to reduce the disadvantages of blindness and the difficulties of blind people, in urging your approval and support of the establishment of a National Eye Institute.

We say, rather-

Although blindness, today, is not the disaster it once was;

Although tools and devices have been developed, although methods and techniques have been devised, which will permit a blind person to live a constructive, contributory life, today;

Still, if the causes of blindness can be determined by the concentrated efforts of skilled and qualified men, and experience in other areas is evidence that this is possible, perhaps even probable;

If blindness can be eradicated from our society, then the men should be found, and the researches financed to realize this goal-for, though blindness can be lived with successfully, today, it is not a condition that should be needlessly continued in America or in the world.

We recommend to this Committee, therefore, that you do all possible to secure congressional passage of the National Eye Institute proposal, that it may be speedily enacted into federal law.

WHAT ARE THE RELATIONSHIPS OF THE NATIONAL FEDERATION OF THE BLIND WITH GOVERNMENTAL AGENCIES?

Mr. Chairman, it is traditional in Congress, that when legislation is developed which will affect the welfare or interest of a particular class of citizens, to require in such legislation that members of the affected class be consulted in the administration of the programs to be established-consulted, not after the fact, not after administrative decisions have been reached, not after program policies and plans have been determined upon-but consulted as participants in the discussions which precede the decisions, as full and equal participants in the formulation of plans and policies.

Farmers, industrial workers, businessmen-the views of each group are sought and ascertained in compliance with statutory requirements, and each group, through its designated spokesman, participate as acknowledged experts in their

field, in federally-established programs involving their special concerns and interests.

However, Mr. Chairman, it was not until the adoption of the Economic Opportunity Act of 1964 that Congress recognized the importance and the necessity of applying and incorporating the principle of beneficiary consultation and participation in a federal social welfare program.

Mr. Chairman, by statutorily requiring that there must be "maximum feasible participation" of the poor in the programs created and established to assist and benefit the poor, Congress recognized that, just as farmers are experts on agricultural problems, just as working men and women are experts on the conditions of their employment, and just as businessmen are experts on matters of trade and commerce-so, too, are the physically impaired, the socially and economically disadvantaged, experts on the problems and perplexities which are peculiar to their special circumstances and conditions.

Of course, "consultation" has long been an accepted practice in the social welfare field, but such consultation has only extended to and included the specialists trained and educated in the fields of medicine, psychiatry, psychology, rehabilitation, social casework, and like specialties; consultation and participation in decision-making has not extended to and included intended beneficiaries of federal programs-the persons who have acquired their claim to expertness by living with the problems to be dealt with by the programs, by coping with the problems and solving them in their own lives.

Since the founding of the National Federation of the Blind in 1940, we, blind people, have contended that, as blind people, we possess an expertness on the circumstances of blindness and the conditions of blind people, that merited, that required our participation in the formulation of policies, plans, and programs intended for the sole purpose of serving and satisfying the special needs of blind people.

Sometimes we are consulted by federal administrative officials, but, usually, it comes at a point where we are invited to approve already-arrived-at decisions, to give our support to already-determined-upon plans and policies.

It is our hope, Mr. Chairman, that this Committee will give very serious consideration to the taking of such actions as are found necessary to extend the "maximum feasible participation" doctrine of the Poverty Program to the other federal programs created by Congress to resolve the difficulties and disadvantages of handicapped men and women. о

INVESTIGATION OF THE ADEQUACY OF FEDERAL AND OTHER
RESOURCES FOR EDUCATION AND TRAINING

OF THE HANDICAPPED

67-052

PART 3

HEARINGS HELD IN NEW YORK, N.Y.

DECEMBER 19 AND 20, 1966

Printed for the use of the Committee on Education and Labor
ADAM C. POWELL, Chairman

U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON: 1967

LOUISE MAXIENNE DARGANS, Chief Clerk
RUSSELL C. DERRICKSON, Staff Director

C. SUMNER STONE, Special Assistant to the Chairman
Dr. EUNICE S. MATTHEW, Education Chief

LEON ABRAMSON, Chief Counsel for Labor-Management

ODELL CLARK, Chief Investigator

TERESA CALABRESE, Administrative Assistant to the Chairman MICHAEL J. BERNSTEIN, Minority Counsel for Education and Labor CHARLES W. RADCLIFFE, Special Education Counsel for Minority

AD HOC SUBCOMMITTEE ON THE HANDICAPPED

HUGH L. CAREY, New York, Chairman

Dr. EDWIN W. MARTIN, Jr., Director
LORETTA B. BACKUS, Clerk