Cong. John E. Fogarty

Warwick Rhode Island
Rotary Club

June 28, 1966

J. ARTHUR TRUDEAU: PIONEER IN MENTAL RETARDATION

As members of a club which has actively concerned itself
with the problem of mental retardation in this State, I know
the name of J. Arthur Trudeau is well-known to all of you.

Tomorrow marks six months since the sudden death of this
great humanitarian. For me his passing meant the end of a
long personal friendship and the loss of a powerful and esteemed
colleague in the fight against mental retardation. For Rhode
Island and the Nation his death meant the passing of one of those
rare men who build upon personal tragedy a lifetime of service
and dedication to their fellows.

Tonight, on the eve of this solemn anniversary I hope we
may together recall some of the accomplishments of J. Arthur
Trudeau and also look briefly at some of the major Federal
programs in the field of mental retardation. Many of these
programs have their roots in Arthur's pioneering efforts to
arouse the public to the plight of the mentally retarded.

It was the birth of his own mentally retarded son in 1939
that set J. Arthur Trudeau on a lifelong crusade to bring

understanding and hope to the mentally retarded.
-2-

In 1939, mental retardation was no less of a national
problem than it is today. Yet virtually nothing was known
-about it, and there were few who were trying to learn.

Usually no distinction was made between mental deficiency and
mental illness.

In too many instances, the mentally retarded, especially
those who were dependent adults, were closeted away as the
secret shame of their families. Little mention was made of
them in the family circle, once the doctor had made his final
pronouncement that nothing could be done. The mentally retarded
child, if he had a kind family, could at best expect sympathy
and good maintenance care. But neither true understanding of
his problem nor scientific help to aid him to become a productive
member of society was available.

The less fortunate mentally retarded child or adult was
placed in a public institution and received much of the same
harsh treatment as was then often accorded the mentally ill.

By the middle 1930's studies of eugenics were interpreted to

prove the potential danger to society of mental retardates.

These studies caused more than half the states to adopt compulsory
sterilization laws designed to prevent retardation in succeeding

generations.
-3-

That those laws which still exist are seldom enforced is
a credit to our collective good sense. It is now widely believed
that sterilization is highly unlikely to appreciably reduce the
numbers of mentally retarded in future generations. Some
retardation is inherited, but other forms result from infectious
disease, brain injury, and social deprivation. Retardation
occurs in families at all social and economic levels and may not
be present at birth.

It was thus a hostile world J. Arthur Trudeau faced when he
began his long drive for understanding and help for his son and
for the other mentally retarded children of this country.

After trying in vain to find help for his son, J. Arthur
Trudeau helped found the Parent's Council for Retarded Children
in 1951. He was chairman of the Association's first fund drive
and served as the group's president from 1955 to 1957.

I vividly recall one evening in 1954 when I attended a
meeting of some parents of retarded children at Arthur's
invitation. Although at that time I had been active in the
field of health legislation for some time and was quite familiar
with most of our nation's great health problems, I must confess

I was very much in the dark about the scope and consequences of

mental retardation.
-4-

That meeting served to open my eyes to a problem that
we now know to be the number-one affliction among children.

Only mental illness, heart disease, arthritis, and cancer
have a higher prevalence in our total population, and these
tend to come late in life, while mental retardation comes
early.

Yet in 1954 not a single Federal dollar was being spent on
research in this field. Most facilities for long-term care of
the mentally retarded were pitifully sub-standard, and qualified
medical and technical personnel in the field, woefully scarce.
Welfare assistance for families with retarded children was
similarly inadequate.

Even those families who could well afford to sustain
expensive long-term medical care found the situation hopeless.
Mrs. Sargent Shriver, sister of President Kennedy, recalled in
a magazine article two years ago that two decades previously,
when her family sought help for her retarded sister Rosemary,
they found little but "cynical despair."

"Even 10 years ago,'' she reminded us, "not a single university
was focusing on mental retardation. Scientists cared little about
it, doctors regarded it as hopeless, the public confused it with

mental illness."
~5-

I left that meeting back in 1954 deeply shocked, yet at
the same time encouraged by the optimism of those brave parents
/ who refused to believe the doleful pronouncements that nothing
could be done.

I brought the story of that meeting back to Washington and
I soon found that very few people were aware of the scope and
depth of the problem of mental retardation. Once all the facts
were brought to light however, I am glad to say, Congress
responded in 1956 with the first Federal appropriation -- $750,000
-- for research in mental retardation. This is a relatively small
amount by today's standards, but certainly enough to start
things moving.

The confidence of those courageous parents I met ten years
ago has been magnificently borne out. Progress in meeting the
medical and social needs of the mentally retarded has been
gratifying indeed.

Yet a truecrusader is never satisfied until nothing less
than ultimate victory is attained. Despite the great strides
taken toward the conquest of mental retardation in the past
decade, J. Arthur Trudeau never relented in his efforts to, in
his words, “help my boy Kenny, number one; and to help other

kids, number two."
-6-

Arthur was elected a director for the northeast region
of the National Association for Retarded Children in 1957 and
the following year was named to the Advisory Commission for
Ladd School. In 1962 his unceasing work led to his nomination
for a leadership award of the Joseph P. Kennedy, Jr. Foundation.

Arthur paid a great honor to me in his work to incorporate
the John E. Fogarty Foundation for the mentally retarded. The
Foundation was an outgrowth of the work he began in 1962 as
chairman of occupational training at the Center which also,
thanks to the generosity and good will of the people of Rhode
Island, bears my name.

In April 1965, Governor Chafee appointed J. Arthur Trudeau
to a 12-member advisory council on mental retardation to study
the needs for comprehensive community programs in the State.
And, a year ago this month, Arthur was appointed to a three-year
term to the state Advisory Council on Mental Retardation, That
J. Arthur Trudeau did not live to complete this term is our
immeasurable loss.

Nor did he live to see the completion of the community center
for retarded children in Apponaug. When that center is completed,
it will serve as a fitting memorial to one who worked tirelessly

to raise funds for its construction.
-7-

Yet he would have been grateful in the further knowledge
that the State of Rhode Island has at last decided to lend its
support to the center.

The awareness that J. Arthur Trudeau helped to create in
the field of mental retardation spread beyond the borders of
this State. His pioneering efforts played a major role in
shaping the comprehensive Federal mental retardation “rogram
we have today.

I have been privileged to be one of the architects of this
Federal program which includes preventive services designed to
reduce the incidence of mental retardation. Maternity and Infant
Care projects provide health care to prospective mothers in high
risk populations. Nearly thirty such projects have been approved.
Grants also support screening programs for phenylketonuria (PKU)
and other metabolic disorders which lead to mental retardation.

As of September, 1965, thirty-two States had enacted laws concerning
PKU, most of them making screening of this disorder mandatory.

Other programs are administered through the States to increase
the health and welfare services available to the retarded. These
programs are helping to enlarge existing mental retardation
clinics by adding staff, increase the number of clinics, and begin
evaluations of children in institutions. State agencies, with

the help of Federal funds are extending screening programs, providing
~8-
treatment services for physically handicapped retarded youngsters,
increasing inservice training opportunities, and providing’
homemaker and other care services for the mentally retarded.

The mentally retarded receive a variety of services through
programs supported by the Vocational Rehabilitation Administration.
These services include diagnosis, physical restoration, counseling
and testing, and assistance in job placement and follow-up to
insure successful rehabilitation. The Vocational Rehabilitation
Act Amendments of 1965 will assist in the rehabilitation of
additional mentally retarded persons to productive lives.

Projects supported by the Public Health Service include new
techniques of providing services to the mentally retarded such
as new referral methods, new methods of care and management of
the retarded, and improved methods of care, treatment, and
rehabilitation. Major emphasis is being given to projects which
will result in the provision of the array of services needed for
comprehensive and continuing care.

The Elementary and Secondary Education Act of 1965 provides
the opportunity for school districts to develop creative educational
programs for the mentally retarded.

Training programs for professionals who work with the mentally
retarded are a part of many of the service programs. These include
professional preparation for research in the biological, medical

and behavioral sciences. Training grants help supply personnel
-9-
for the provision of health, social, and rehabilitative services
for the mentally retarded. Other grants help to train teachers
and other educational personnel in the special education techniques
necessary to the teaching of the mentally retarded. “Presently
close to 5,000 teachers are in training for teaching the mentally
retarded and other handicapped children.

The Social Security Amendments of 1965, which included Medicare
in its provisions, also vastly increased the Department of Health,
Education, and Welfare's program for training professional person-
nel’ who work with the mentally retarded. New authority included
in these amendments will make possible the training of a variety
of additional personnel through grants to institutions of higher
learning.

Approximately $34 million was devoted in fiscal year 1966 to
research supported by the Public Health Service related to mental
retardation. Grants from the Office of Education support research
and demonstration projects in the area of education and projects
related to the adaption of communications media to educational
problems of the mentally retarded. The Vocational Rehabilitation
Administration supports research projects that seek to coordinate

community resources for the mentally retarded.
- 10 -

Funds are awarded by the Department for construction of
three types of facilities for the mentally retarded. The |
Mental Retardation Facilities and Community Mental Health Centers
Construction Act of 1963 provides for the construction of research
centers to assist in the development of new knowledge for
‘preventing and combating mental retardation, university affiliated
facilities for the mentally retarded to provide for training of
physicians and other professional personnel, and community
facilities for the mentally retarded to provide diagnosis,
treatment, education, and training including sheltered workshops.

Amendments to this Construction Act passed last year added
funds for the initial staff and operation of these facilities,
extended and increased appropriations for research and demonstration
projects to improve education of retarded children, and authorized
increased annual sums through fiscal year 1969 for training
teachers of the retarded.

The Welfare Administration administers a public assistance
program to aid needy families to support retarded children who
are permanently and totally disabled.

In all, a total of 48 programs provide financial assistance
for service programs, research and demonstration projects,
training, construction, income maintenance, and other assistance

programs in the Department of Health, Education, and Welfare.
~11-

To coordinate these activities a Secretary's Committee on
Mental Retardation has been formed. Representatives serve on
this Committee from each unit of the Department that has a
mental retardation program. Mental retardation activities are
thus administered as a unified, whole program which has as its
objective combating mental retardation with every resource at
our disposal. The Committee also keeps in close touch with
groups outside the Federal Government concerned with mental
retardation programs.

The development of this wide array of service and assistance
programs on the Federal level was very gratifying for J. Arthur
Trudeau. Yet I know that deep inside he regretted that they
did not occur thirty years sooner so that his own son, who is
rightfully any father's chief concern, might have been helped.
Still I know he was deeply grateful knowing that, at last, many
children of succeeding generations might be spared the tragedy
of mental retardation.

He also knew that much work still remains to be done. Great
gaps still exist in our knowledge of mental retardation. For
example, Arthur's son Kenny is one of the 75 per cent of the
mentally retarded for whom no cause of their affliction is known.
More personnel need to be trained. Many more centers such as
the Trudeau Memorial Center, to which this club has given its

full support, must be established throughout the Nation.
-12-

I can promise that we in Congress will see that adequate
funds are made available, but under our Federal partnership
system the States must supply the initiative for employing these.
funds for useful purposes. I am sorry to say that many States
have been slow in taking advantage of the assistance available
to them.

It is here that service clubs such as Rotary render an
invaluable service. By creating public awareness, and through
your fund-raising activities to get the Trudeau Center built,
your club and others have shown that the people of this State
wanted and would support such a center. Such a demonstration
was undoubtedly a major factor in securing State interest and
assistance for the project.

I can only hope that the recent State action is only the
first of many activities which Rhode Island will undertake to
fight mental retardation. Rhode Island can develop a comprehensive .
program in this field that could serve as a model to other States.

Certainly J. Arthur Trudeau would be most pleased with this
recent turn of events. But restless pioneer that he was, he would
urge us on to new frontiers, to cut through new barriers of
ignorance and apathy until the goal he sought for twenty-six years
was finally achieved. No less than the final elimination of mental

retardation on all its fronts would have satisfied him -- no less

I am sure will satisfy us.