Ask the Scholar
Document scope · 1 page
Scholar
Ask about this object, its catalog metadata, its source description, or the page inventory.
For page-specific OCR and visual context, open one of the page chats.
Scholar Source Context
Document identity
localId
377744824
label
CST [Committee on Science and Technology] - Committee Statements [1976] [1]
core
doc
dtoType
document
citationUrl
pageCount
1
Source metadata
id
377744824
contentType
document
title
CST [Committee on Science and Technology] - Committee Statements [1976] [1]
citationUrl
collections
Lex Frieden Collection: Records on Disability Rights
Government Records
imageCount
1
hasImages
yes
source
import
hasTranscription
no
Source extras
naId
377744824
levelOfDescription
fileUnit
recordType
description
ocrSource
nara-archive
Single page context
seq
1
pageIndex
0
type
document
mediaId
3b0dcd7506c92d64
ocrText
Originally Processed With FOIA(s):
FOIA Number:
S
S
FOIA
MARKER
This is not a textual record. This is used as an
administrative marker by the George Bush Presidential
Library Staff.
Record Group/Collection: Donated Historical Materials
Collection/Office of Origin: Frieden, Lex, Collection
Series:
Government Records
Subseries:
Government-created Organizations
OA/ID Number:
52007
Folder ID Number:
52007-002
Folder Title:
CST [Committee on Science and Technology] - Committee Statements [1976] [1]
Stack:
Row:
Section:
Shelf:
Position:
G
5
2
1
7
September 21, 1976
The Honorable Olin E. Teague
Chairman
Committee on Science & Technology
United States House of Representatives
Washington, D. C. 20515
Dear Congressman Teague:
The attached report is submitted by Rehab Group, Inc. in response to your
invitation contained in your letter of August 12, 1976 to provide written
comments on testimony to be given before the Committee on September 23, 1976.
It is my understanding that this testimony is to deal with the Panel on
Research Programs to Aid the Handicapped. The major remarks contained in
this report deal with certain aspects of research and development, namely,
application.
Since Rehab Group, Inc. is owned by the handicapped and has been built on a
philosophy of employing and training handicapped individuals we are very
pleased for this Committee to have such a fine consultant panel. The
Committee should share our strong dedication to every effort made to improve
the life of the handicapped. Our remarks in this testimony are based on
our own individual experiences as handicapped individuals, as well as our
group experience in maintaining a successful competitive corporation owned
by the handicapped.
On behalf of the 150 employees of Rehab Group, Inc. I would like to thank
you for this opportunity to present these comments for the consideration
of the Committee.
Sincerely,
John D. Collins III
Special Assistant
for Handicapped Services
JDC/spp
Enclosure
Rehab Group Inc 3110 Columbia Pike Arlington Virginia 22204 Telephone (703) 521-7800
Statement Of
John D. Collins III
Special Assistant
For Handicapped Services
Rehab Group, Inc.
3110 Columbia Pike
Arlington, Virginia 22204
Before The
House Committee on Science and Technology
September 23, 1976
This printed testimony is submitted by Rehab Group, Inc. to the
House Committee on Science and Technology as support to oral testimony
delivered to the Committee on September 23, 1976.
REHAB GROUP, INC. - An Overview
Rehab Group, Inc., is a handicapped-owned corporation dedicated to
providing services to and developing products for the handicapped. In
order to achieve this major corporate objective, Rehab is organized
around several operating groups, each dealing with a special aspect of
services and products. Currently, these groups include computer and
information sciences, research, education and training for the handicapped,
transportation, electronics, and international operations.
The basic operational philosophy behind Rehab is to develop a corporate
capability which is competitive and profitable. From this base of un-
subsidized support, the handicapped are employed and trained when necessary
to perform needed services in order to maintain the competitiveness and
technical reputation of the corporation. This philosophy has proven
quite successful in creating a solid corporate capability of services and
products. This makes it possible for Rehab to provide employment and career
advancement opportunities for the handicapped in the new technologies at
competitive salaries. Rehab currently has 150 employees, over 40% being
severely handicapped.
Formed in 1972 and concentrating its initial effort in the information
sciences, Rehab has successfully performed on all of more than 40 (as of
31 March 1976) contracts and has current annual sales of $2.2 million.
Rehab has successfully performed contracts for government agencies, private
profit and non-profit corporation, and state and local governments. The
largest operating group continues the inital focus on computer-based
information systems, data base management systems, data entry (remote and
batch), micrographics (including microfilming), systems design, computer
programming, and facilities management.
Rehab has developed an internal capability for designing, developing
and implementing education and training programs, including self-instructional
multi-media curriculum packages that meet individual client needs. Evaluation
studies and program review techniques are conducted using objective measures
of performance. Studies have been performed in both "hard" and "soft" areas
ranging from the evaluation of computer capabilities to the analytical
appraisal of the definition of "severe handicap".
Rehab also contracts for consulting and technical advisory services
to governments, hospitals and public agencies in designing barrier-free
facilities, operating transportation systems for the handicapped, developing
educational programs to meet career expectations and the in-service training
of personnel. Rehab is engaged in research and development activities
including inexpensive wheelchair lifts, alternative public transportation
for the handicapped, remote training capabilities and new means of individual
independence.
Rehab utilizes the handicapped in the above acitivites, employs and
trains (when necessary) these individuals in related skill areas. Through
its continuing relationship with a fully accredited, college-affiliated
Life Experience Center, Rehab Group, Inc. provides an opportunity for
employee career advancement by granting college credit for relevent and
evaluated work experiences. This includes working with an individual from
the GED level to post-graduate studies.
Rehab utilizes an objective based, systematic Curriculum Development
Model in the design, production and evaluation of validated learning programs.
Procedures, materials, personnel, and facilities are utilized SO as to
produce the most cost-effective learning program. Self-instructional,
multi-media learning materials, with audio/video and computer feedback,
have been produced in performing evaluations. Computer-based information
systems may be used, for example, to establish data bases for subsequent
statistical manipulation. Rehab's evaluation technology focuses on the
objectively measurable aspects of the areas under examination, whether the
evaluation is formative or summative.
Rehab has developed a working knowledge of the most cost effective
means of providing employment services to the handicapped. Special
accommodations have been developed for employing homebound data entry
specialists and computer programmers using a variety of remote computer
terminals, both visual and hard copy. Rehab has provided technical
assistance on barrier-free housing for the handicapped, including the use
of computer based inquiry systems for coordinating human service needs.
Through its staff resources of handicapped, new areas of research are
being identified and explored for possible solution.
This Panel should aim to give handicapped individuals across
the country part of the great advantages I have been fortunate to
receive. Many people share the credit for my current success and
we all must be aware of the great need to further apply the benefits
of current technologies SO that more people can enjoy the success I
have realized.
The Everest & Jennings wheelchair I am sitting in has a newly
developed power unit on it. The "Insta-Gaiter" has been developed
by Mr. John Wierb in Mentor, Ohio. The chain driven wheels have a
very sensitive proportional control powered by a 24 volt gel battery.
These small wide wheels are a quickly replaceable power unit that
should become a rapid favorite among the million wheelchair users
in this country because of its convenience improvements.
Having a motorized wheelchair is a new experience for me, after
eleven years of being pushed in a manual chair. The more barrier
free the environment is around me, the more I realize mobility. This
personal example of research utilization means everything to me.
My personal transportation is a Volkswagen van with a patented
lowered mid section floor. The HP Bus Corporation of America has made
it convenient and safe for wheelchair bound passengers to remain active.
Lowering the floor enables me to ride up the short ramp in my powered
wheelchair to the tiedowns.
Combining the Insta-Gaiter and HP Bus makes me a much more mobile
person than I have evern been. I want to use these new inventions to
show others with disabilities just how much is possible with the
benefits of science. I can not use my legs, but I can go places.
The basis research has been done to alleviate many potential man-made
barriers that two few planners concern themselves with. Much can be done
to technologically allow ready access to the mainstream if man-made
barriers will. Technological innovations compensate for some losses as
mechanical devices provide many aids to daily living. Such as the Voice
Data Entry Terminal System (VDETS 1000 series) computer data processing
capability for even the most severely physically handicapped technician.
This is just one of many field applications of research for potential
employment.
The more mechanical compensations available to supercede functional
limitations and the more other abilities are able to diminish problems
caused by those certain functional limitations, then handicapped individuals
will consider themselves less disabled. Improving life for anyone handi-
capped is a realistic goal of research and development in every laboratory
and testing facility. The end product of all these developments should be
easing the problems of some disabled or even many disabled individuals.
Devices should have minor adjustments in basic items SO many can use
the product, thereby spreading application to many users instead of
customizing for one specific problem. Orthopedic developments have brought
about very useful prosthesis adaptable to many needs, instead of it being
necessary to experiment with many appliances in an attempt to relieve an
individuals own difficulties.
It is not within the scope of this report to pass judgment on vocational
rehabilitation guidelines but it must be said that the government is often
the only source of payment an individual might solicit to help pay for the
expensive appliances that definitely make the handicapped individual
able to seek an equal opportunity to access.
The Congress should be commended for spotlighting the great strides
possible with modern technology. Just now development from the Manned
Space projects research are becoming products that rehabilitation centers
and private industry have found ready markets. There are thousands of
handicapped individuals who will benefit from the work of this Panel
on research to aid the handicapped.
I would like to address my report to three major concerns that I
personally feel are crucial. They are divided into three areas for
this report. My first topic is accessibility, the second is the
handicapped-owned corporation and the third topic is the status of
handicapped individuals.
The panel on research programs to aid the handicapped has the
opportunity to do great service to a very large minority - the
handicapped. This panel of experts has the charge to direct research
and development projects to the greatest needs of the handicapped
Americans just as science has the basic research done. Now the
Science and Technology panel of consultants has the material from
which to select the most beneficial.
Please make every effort to increase the value of your report to
the Congress. Give the Committee on Science and Technology the best
possible guidance for their consideration. Helping the handicapped
individual lead the fullest, most normal life is not quite the same
as sending mankind to the moon but it sure comes close from where I
sit. Just think about how much is technically feasible in the NASA
program and then look at the hospital supply equipment in current use.
Transportation in terms of research aids for the
handicapped should include all forms of mobility. For a disability
to preclude one from average mobility a handicap exists. Most people
are unaware of the subtle barriers that man keeps putting up by not
following the American National Standards Institute (ANSI) standards
for a barrier free environment. The updating of these statutes this
year should be a key focus of this section of your report on research
as transportation mobility would not be such a misunderstood issue if
people could get around in spite of mobility impairments.
The ANSI work is very comprehensive except in its application.
This panel should demand that common sense provide the means to enforce
implementation of these standards for a barrier free environment. The
universal enforcement of these quality standards upon new construction
and renovations would magnify greatly the opportunity handicapped
individuals would have for access. Better enforcement of a barrier free
environment would make for amazing improvements in every facet of rehabilita-
tion. Opening the environment will make a high impact on utilization as
wheelchairs would be much more likely to be motorized and many work
situations would open to people able to get into buildings.
Transportation or mobility should be broken into several categories
for discussion of research needs. These are ambulation, barriers, and
paratransit. The freer movement every disability has within the environ-
ment the more assistance technology can be. People should be able to use
science to an advantage to make up for the extra problems of having a
disability.
The Federal Government is receiving much more value than it
asks for in the dollars of taxpayers invest in Regional Research and
Training Centers. These programs are the training ground of the very
people who assure benefit from the application of the R&T centers research.
These monies should be increased to train more than the few there are now.
Every R&T center has some valuable work needing to be expanded. What
has been proven and tested needs to be applied in large training programs
in more than a few isolated spots call for in current plans. There are
many good projects to break out of the laboratory or the pilot phase
and widely distributed as if rehabilitation were the new space
technology explosion of American ingenuity. Maybe just maybe
it will be happening because we today are here searching for real
solutions to aid many handicapped individuals.
So many fine research projects have been funded and nurtured by
the Rehabilitation Services Administration that now need the market
place to know about. The best way to do this would be to produce the
training packages in modular form for fast development across the
country. RSA should be commended and challenged to continued to
succeed.
Independent Lifestyles, Inc. in Houston, Texas has some of the
best medical models ever developed. These should become multimedia
training packages SO the disabled and their service providers every-
where would learn the ways for handicapped individuals to live in a
variety of settings going to school or work and taking advantage of
all of the available technology. Proof of these major successes by
handicapped individuals themselves should be enough to set off many
training programs to apply and provide the same services. This may
not seem to be a research program but ILS is because of its techno-
logical foundation.
The entire spectrum of employment for the handicapped person is
changing much, much faster than the rest of the job market. This is
because of the many dedicated people, several of them disabled themselves,
such as Tom Schworles in Chicago and Surinder Dhillon in Washington,
who make jobs in the technologies feasible. Computers and Micro-
imagery are rapidly becoming more and more important in today's
world. The market for data processing and microfilming products
has barely been scratched. This is an area that the R&T centers
should begin concentrating on in their training programs. Many
interfaces have been developed that now need to be applied across
the country. The combination of computer retrieval potentials
of microfilmed documents is an employment area that is opening
in the present and will growth tremendously in the near future.
Cost effectiveness and marketability of products are the two
major concerns every enterprise must be take into account. For
the many thousands having physical and mental handicaps, the
usual demographic studies leave very little to go on mainly
because of the architectural and attitudinal barriers. The more
technology becomes available for the mainstreaming of handicapped
individuals the more likely their participation in the opportunities
of America will increase. Employment is an important area for
research and development monies and contracts because everything
becomes more possible when there is equal opportunity to access.
Combining the small projects at many R&T centers with the national
scope as brought out by this Panel will be a very important element
of this panels report. Ways to apply the training based upon research
performed by rehabilitation researchers is the priority of this panel.
Handicapped individuals are often their own best advocates. The
disabled should know better than anyone the nearest solutions to
provide individual mobility, barrier removal, training and aids for
daily living. The solutions to these problems are feasible with the
necessary financial and managerial programs evidenced in other
rehabilitation and corporate programs.
Handicapped entrepreneurs should be given incentives to develop
markets for products and services within the R&T center system. There
are many private enterprises that would assist in the development of
new services and products if the monies where provided to assist
them.
This brings me to my second topic which concerns the handicapped-
owned corporation. A private, profit-making corporation, owned by
the handicapped has problems in obtaining financial assistance. There
is no vehicle in the minority business program designed to provide
aid to these corporations.
The Wagner-O'Day Act has shown to be successful in providing
assistance to non-profit handicapped individuals. This concept should
be expanded to include providing support for profit-making corporations.
This type of program would provide the handicapped entrepreneur with
the financial and managerial assistance required for the handicapped-
owned corporations realize substantial corporate growth. I am not
suggesting special treatment because of a handicapping condition,
just equal treatment. Bank loans and lines of credit for the handicapped
are extremely difficult to obtain, even with a "track record".
Profit-making handicapped ventures should be provided with
competitive business set-aside procurements between handicapped-owned
corporations to further provide a competitive environment for these
corporations. This type of competition would be on a contract award
basis, versus the grant type award, and would instill greater confidence
and corporation cability for all those handicapped corporations actively
interested in developing an on-going business venture. The handicapped
entrepreneur has a great need to experience individual growth and
productivity. Programs designated to provide for this goal would
do much to assist the handicapped population. The handicapped-owned
corporation for which I am employed, Rehab Group, Inc. has proven that
it can do exceptionally high quality work while employing the handicapped
in technical areas.
There are many research and development projects funded through
Rehabilitation Services Administration for "non-profit" corporations.
We recommend that monies for R&D type procurements also be made available
through RSA for private profit-making corporations. These funds would again
be awarded on a competitive basis, calling for corporate performance
and accountability. Handicapped individuals and corporations are not
afraid to compete. In fact, handicapped individuals are highly motivated
to produce in the "real" world.
My third topic concerns improving the status of the handicapped
individual. In a world which places great emphasis on individual
achievement, there is a great need to provide an opportunity for the
handicapped population to achieve and realize personal well-being.
It is important that the labeling process of the handicapped be
eliminated. This labeling only acts as a deterrent to the progress of
the handicapped individual. The general public should be educated to
the needs of the handicapped and enlightened as to the multitude of
services and abilities of the handicapped.
A National Data Base of information on the handicapped would
greatly aid in the understanding of the handicapped population and
their abilities and needs. Through his data base, the general public,
as well as employers, can realize means of mainstreaming the
handicapped population into all aspects of our society.
The number of handicapped individuals is a matter of public
record, with the number varying according to one's interpretation of
handicap. But, regardless of the final count, there are an increasing
number of unmet needs that must get legislative attention as well as
further research and development. Housing, transportation, employment,
training, health care, and barrier free design are all problems that
this panel should address determine means of solving them. I would
encourage the Science and Technology Committee to provide a forum
for private, handicapped-owned corporations to participate in their
resolution. Speaking for the handicapped, I must say that simple,
realistic and operational solutions are far more desirable than
laboratory development technical that may or may not work.
For example, it is feasible for a contractor to building housing
to accommodate the handicapped. Yet, based on my fellow friends and
employees experience, full time maintenance and health care must be
available in order to live independently. What funds are available
to assist in providing this care? How can resources other than an
individuals' own finances be pooled to help pay for group care? We
feel that there are simple solutions to these problems through the
corporate involvement of the individuals, their employers, the housing
units and the VR agency.
Research and development are the disabled individuals catalyst.
Through the resources of technology many barriers are overcome. Many
environmental improvements are direct results of the rehabilitation
counselors awareness of technological possibilities. Capable counselors
go far towards rehabilitating any and every disabled person. Much needs
to be done to assist these tasks in terms of additional services and
combining of fiscal resources to assist individuals to best overcome the
problems of being handicapped.
Being out of the mainstream is a real problem for the disabled. Upon
returning to society, there are SO many barriers placed up unknowingly.
Besides architectural barriers there are many attitudinal barriers, reactions
to physical handicaps, all of which combine to impede moral life-styles.
There must be compensations, understanding and concessions for opportunity
to overcome these barriers or else one has difficulty being happy.
More concern is now being shown towards correcting the severe
disabilities of millions of Americans than ever before. Research dollars
are rapidly expanding the potential help to meet the special neets of many
handicapped individuals. Technology is placing many people back into the
mainstream and as wheelchairs and other orthopedic devices and special aids
become more known in the environment, more accommodations will be made for
them. All this concern appearing lately is demonstrating more awareness
to handicaps, recognition that will make wider acceptance and accessibility
more positively reinforcing. Handicapped individuals should benefit greatly
from the application of all this research and development. All of the factors
of an environment need consideration in terms of accessibility to maximize
an individual's potential, especially a severely disabled person.
NAD
NATIONAL ASSOCIATION OF THE DEAF
301-587.1788
814 THAYER AVENUE
silver SPRING, MARYLAND 20910
FREDERICK C. SCHREIBER
Executive Secretary
My name is Frederick Schreiber. I am the executive secretary of the National
Association of the Deaf. The NAD is one of the oldest consumer organizations in
the U.S., having been founded in 1880. It is also the largest united group of deaf
people in the country. I appreciate very much the opportunity to appear before this
distinguished committee this morning. I wish to note that in keeping with what I
believe to be my role here, I have directed my efforts strictly to the point of
view of the consumer. I also would like to make it clear that while much of what I
have to say relates to all hearing-impaired people, my experience is with people who
are prevocationally deaf, that is: People who lost or never had usable hearing
before the age of 19. In this respect and in order to be sure what I have to say is
meaningful, I am taking the liberty of defining what I am talking about. First is
the term, "deaf." There is no official definition of what constitutes deafness. As
I am using it, it means the inability to hear and understand speech, with or without
amplification. Hearing-impaired, on the other hand, refers to people who have some
usable degree of hearing, again with or without amplification.
In defining deafness, those persons whose loss occurred before the age of 19
are called prevocationally deafened. All others have no specific label. Within
that group, children whose hearing loss occurred prior to the acquisition of
language, that is, before the age of two, are labelled prelingually deafened.
Those who lost their hearing later on are termed postlingually deafened. Pre-
lingually deafened children usually have little or no intelligible speech and on
the average a much poorer command of English than the postlingually deafened child.
- 2 -
For further clarification, there are various causes of hearing loss. The
first is called conductive and is a function of the middle ear. Conductive
problems may be aleviated by modern surgery and as such are of no concern here.
Another cause is genetic - congenital deafness. While I am familiar with
some of the work in this area, I am not an expert. It is my hope that someone will
be asked to testify in this field.
The third area is sensory-neurological or irreversible deafness. This is the
kind of loss that afflicts the members of my organization and it is to this area
that I am focusing my attention. I wish to note, however, one important point
relative to the people with impaired hearing who do benefit from amplification.
This is to stress that the hearing aid does not, as many people believe, do for the
ear what prescriptive glasses do for the eyes. Hearing aids help, but in most
cases cannot restore one's hearing to normal.
The most recent data is that 13.4 million people suffer from some degree of
hearing loss. This is 6.5 people per thousand, making it the largest single
chronic disability in the country. Of the 13.4 million, 6.5 million have a
significant bilateral loss and 1.5 million are deaf, with 410,000 prevocationally
deafened.
With such a large number of people afflicted with what can only be described
as a catastrophic handicap, one wonders why nothing is done in the area of
prevention. I belong to the generation which uses slogans, such as, "an ounce of
prevention is worth a pound of cure." I believe in this case it is especially
appropriate and am at a loss to understand why so little is being done here. We
know, but have not done enough research to determine the significance or value of
the fact, that a statistically significant number of children are born deaf at
certain times of the year. We need to explore this further with an eye to
- 3 - -
decreasing, if not eliminating, the number of children who are found to be deaf
at birth. We know, too, that many of our senior citizens suffer from progressive
hearing losses as they age. We also know that others do not. But we do not
know why some do while others don't. If we could do more intensive research in
this area, it is conceivable that a considerable number of people could be spared
the social and economic deprivation associated with hearing loss, not to mention
the tremendous drain on family finances.
For those of us whose deafness cannot be prevented, the greatest need and
potential source of assistance lies in the area of early identification and
intervention. I wish to stress the "and intervention" because it would not be
enough to merely identify the child. Our current research is in agreement that
the most crippling aspect to deafness is not the hearing loss itself, but the
barriers it provides in communication and the acquisition of language. It is also
universally accepted that the years from 0-6 are the years in which each child is
a "language-learning machine." Educators, psychologists and speech pathologists,
everyone in the field of deafness agree that the sooner the deaf child is identified
and given help, the better his chances of achieving language and normal living,
including an adequate education, social maturity and all that goes with it. The
current systems of early identification are such that 60% of hearing-impaired
infants can be identified during the first two weeks of birth and 80% during the
first six months of life. What is needed is a program enforced by law which will
identify either conclusively or as a high-risk infant, every child that leaves the
hospital. We not only need a program that will insure that every newborn infant
has it's hearing tested before it leaves the nursery, but also that there be a
standardized method for recalling the child for testing to confirm or dismiss the
initial findings. We need a system to provide early training for the hearing-
- 4 -
impaired child and his parents not at the age of 3 or 5, but immediately. It
is conservatively estimated that such a program would diminish by half the traumatic
and crippling effects of deafness.
As I continue, I note that the technology for the foregoing and for the other
needs I wish to discuss exist. In some cases it is a matter of economics. We have
not convinced the medical authorities or the government that the cost of testing a
thousand children to find the 5 or 6 who are hearing-impaired is worth it. But we
test for PKU and we routinely provide silver nitrate to the eyes of all newborn
infants where the benefits are no larger than that for the deaf. If one could fully
appreciate the difference early identification and intervention makes, there would
be no doubt that whatever the cost -- and it would not be much would be worth it.
The foregoing items are in the area of prevention. It is our contention that
adoption of such programs would greatly alleviate the problems we face today and
compared with what it costs to educate and train the prelingually deafened child
now, it would result in a savings to the government.
In the area of more practical applications of technology, we have some
interesting issues. The state of the art in communications today is such that we
have set up communication channels as far away as the moon and even Mars. But we
have not yet found a means by which we can bypass the ear and impinge verbal
communication directly into the brain. This approach is sometimes referred to as
a "cortical" hearing aid. Some research has been done on this in England and I am
aware that a little has also been done at the Callier Speech and Hearing Center in
Dallas, Texas. I do not know of any ongoing research. But as far as I know, there
is little or no evidence to show that sensory-neural losses are the result of
damage to the brain. In most cases, if a sensible way were found to bypass the ear
and the mechanisms that carry sound from the ear to the brain, 90% or more of the
- 5 -
deaf people would be able to hear and understand the spoken word. Pragmatically
speaking, this is the ideal solution. However, if this could not be achieved,
there are other technologically feasible activities that could provide relief for
deaf people.
The next most effective technological advance would be in the refinement of
speech recognition devices that would convert the spoken word into print. We
currently have a machine which will print single word commands selected from a
limited vocabulary. What we need is the exact opposite of the equipment now
available for the blind. Current technology includes optical scanners which can
read and convert all kinds of printed material into the spoken word. It is critical
that for the deaf there be perfected a machine which would convert the spoken word
to print. Ideally such technology should also be capable of miniaturization. The
National Aeronautics and Space Administration had great potential for this to the
extent that any machine so developed to convert speech to print could be adapted
for public use, a smaller one for use in the home and a still smaller portable unit
that could be used for interpersonal communication.
Speaking more generally, there is a great need to develop equipment which
would complement audible indicia. This would include but not be limited to, public
address systems as used in airports; bus and train terminals; intercom or other
vocal channels such as inflight announcements on planes, buses, and trains;
emergency warnings, including fire alarms, a visible equivalent of Conelrad for
civil defense, equipment which would alert and protect motorists in the vicinity
of emergency vehicles, fire engines, ambulances and the like. It should be noted
that modern auto manufacturing techniques are directed at making cars as soundproof
as possible so that all drivers, not just the deaf ones, could benefit from a more
visible means of locating emergency vehicles.
Among the possible solutions are sound-activated traffic lights which could
- 6 -
be set to stop traffic in all directions when triggered by the siren or other
mechanism on the emergency vehicle. Alternatively, a smaller light on the dash-
board of a car would do. In both cases, the main problem is developing a device
that would respond only to selected signals, and not other noises. Sound switches
are not new. There may be a need to develop highly selective apparatus that would
react to very specific and unique sounds and to provide emergency vehicles with
the proper transmitting devices. While this could be costly - how much are the
lives of all the people who are dying today for the lack of this equipment worth?
Not just deaf people. Deaf people are among the safest drivers in the world. Since
we are aware of our inability to hear inside a car or out, we are generally more
alert to the possible presence of emergency vehicles. I would wager that most
people who collide with these vehicles are people who can hear.
Going still further, we come to the area of telecommunications. As noted
earlier, the crippling aspect of deafness lies in its effect on interpersonal and
social communication. I believe members of this committee are aware of the
efforts of the Public Broadcasting Service and the deaf community to secure from
the Federal Communications Commission a ruling reserving Line 21 on the TV screen
for hidden captions for the deaf. For more than two years PBS has been experimenting
with encoders and decoders that will make this possible.* While we do have the
technology to provide this service now, the TV people - the Networks, the National
Association of Broadcasters and the TV manufacturers are opposed to allocating
Line 21 to the deaf. One of the reasons being given is that the technology behind
the decoders is "unacceptable." I am no engineer. I don't know how good or bad
the technology on this device is. I do know that it works and I guess that is all
I care about. After living more than 40 years in a muffled world in which I can
only get bits and pieces of what is going on in the world around me, I am willing
* Captioning Project Evaluation, Dr. Donald Torr.
- 7 -
to accept anything that will let me out of the silent prison I am in. If more
technology is needed, then it should be provided. The 10 or so million people who
will benefit from hidden captions demand it. Anything that could do so much for
so many people surely would be worth whatever it might cost.
We need, too, to develop the captioning technology to the point where such
captioning could be applicable to "live" television broadcasts including news
shows. The inability to get the news is one of the greater frustrations facing
deaf people. Recent developments in the FCC on requiring television stations to
provide visible as well as audible emergency warnings is one small step in the right
direction. But developing a means for instant captioning would be better still.
Objections raised by the television networks focus on the probable cost of the
encoding and decoding equipment. Possibly improved technology could lower the cost.
More likely, however, the cost is related to production and until there are a
sufficient number of captioned programs, sales of decoders will be slow.
One way to decrease the cost, in addition to improved technology, might be for
Federal assistance in purchasing large numbers of the decoders.
In the same area of telecommunications are the devices known as TTYs. These
are generally teletype machines which have been converted so that with the aid of
a special coupler they transmit messages over telephone wires. The coupler acting
to convert the typed letter to an electrical impulse on one end and on the
receiving end it actuates the same key to produce the original letter. Currently
most TTYs are obsolete machines which have been discarded and donated for the use
of deaf people by the Western Union and Bell Telephone systems. While the machines
themselves are often free, the coupler and attendant costs run up to at least $250
or more. Some machines can go as high as $1000, and this for obsolete equipment at
that. There are newer adaptations of such a device and I have taken the liberty of
bringing one here with me today. This little piece of equipment costs $650. While
- 8 -
it is undoubtedly an ingenious device, if you sneeze or blink your eyes you can
lose part of the message. This is but one of several new devices of a similar
nature, all of which cost over $500 each. We need to develop a machine that will
be durable, portable, and provide hard copy for not more than $200.
A hard copy machine is needed for those of us who have language problems. For many
deaf people language is not easily acquired and it takes time both to digest the
message received and to compose a reply. Without a printed message to refer to, the
average deaf person is at a distinct disadvantage. Please note the cost of such a
device is in addition to normal telephone charges. In fact, I err in calling the
telephone charges "normal." This is because it takes at least three or four times
as long to type a given message as it does to deliver it verbally. The telephone
is an integral part of society. If for any reason telephonic service were disrupted
nationwide, our economy would come to an abrupt and crashing halt. Yet in this,
the 200th anniversary of the founding of the United States, less than 1% of the deaf
people have these devices. There is a great need not only to develop the technology
to the point where the devices can be sold at a price everyone can afford, but also
to develop the concept that every government agency that is now serving American
citizens by phone should also have one of these TTYs. Every Congressman who has a
duty to represent all of the people in his district should have one as well. So
should hospitals, police stations, fire houses and the like. They belong, too, in
State Legislatures, and other places as well.
In related areas and possibly in conjunction with current achievements which
provide for the conversion of the printed word into speech, there is a need to
adapt this technique to telephone communications in the sense that such a device
could be the telephonic link between the person who is deaf and has a TTY and all
other people who can hear but lack TTYs. For example, doctors, dentists, stores
- 9 -
that accept telephone orders, friends, anyone that a deaf person might want or need
to contact who has normal hearing but might not have enough need for a TTY. Using
such equipment, if it were available, the deaf person could call for an appointment
with a doctor or even order a pizza from the corner pizza parlor.
Finally, while I am not too confident on the needs of the hearing impaired,
as previously stated, I do know that hearing aids do not fully compensate for
hearing loss. There is a need to improve both the quality - or more precisely,
the effectiveness, of hearing aids and in such a way as to lower the cost. Auditory
support is generally recommended for all children who have any degree of residual
hearing. At the present time, the parents of a normal deaf child can expect to
spend several thousand dollars for a hearing aid and its maintenance. During a
normal year, an active child will grow out of 2 sets of personally fitted ear molds,
ruin countless fine wire cords while at play and perhaps lose 2-3 receivers on the
playground, at a field trip or in the backyard. Batteries must constantly be checked
and replaced to insure top efficiency and comfort. A dying battery makes the aid
annoying and useless. The entire unit ($500) may be damaged in a fall on the stomach.
Therefore more hearing aids occupy drawers than ears at an age where the child needs
to learn about auditory stimulation.
The development of a less expensive aid would also bring the device into the
reach of older people who might benefit but cannot afford the hearing aid on their
fixed income. I am told that hearing aids are not covered by Medicaid. Nor are
they as effective as they could be. At present time reports say they are only 50%
effective for school age children. So that aids not only need to be made more
economical but much more effective as well.
I have neglected to mention research in the area of speech and speech
synthesis. Partly this is due to the feeling of the deaf person that the areas
already mentioned are those in which we are most involved. But I should note that
- 10 -
the area of speech also needs attention. I have attached hereto a paper reflecting
the current state of the art. Of special interest is the speech synthesizer.
Research on this is pretty well advanced. However, we need a greatly expanded
effort to provide for individuals a means by which they can synthesize the spoken
word to overcome the inherent difficulties imposed by deafness.
Similarly, considerably more effort should be extended to research on
visually-oriented systems. Ours is an auditory world. As such we have imposed
auditory values on everyone. We have little consideration for values that are
different from that of the majority. But there is much to be said for developing
ways to meet the needs of the individual as opposed to trying to make the individ-
ual fit the molds of "normalacy." That's often the case of forcing a square peg
in a round hole. I can at least assure you, Mr. Chairman -- some of us are square!
The Nervous System. Donald B. Tower, Editor-in-Chief. Vol. 3: Human
Communication and Its Disorders. Raven Press. New York, 1975.
Speech-Processing Aids for Communication
Handicaps: Some Research Problems
J. M. Pickett
During the past 25 years, research on speech,
synthesis (artificial speech) for use by the
combined with new electronic techniques, has
speech-handicapped and in book-reading sys-
produced a technology of speech processing
tems for the blind. We discuss each of these
that enables us to analyze and synthesize speech
below.
automatically. As these capabilities developed,
so did research to apply them in the allèviation
SPEECH-PROCESSING AIDS
of speech communication handicaps. Major
TO SPEECH RECEPTION
research questions have been: Can we develop
speech-processing devices that will provide
Visual and tactile transforms of speech have
good speech communication for the deaf and
been studied as aids for the deaf since the 1920s
hard-of-hearing? Can we build electronic aids
when the advent of electronics made possible
to improve the teaching and correcting of
the instantaneous frequency-analysis of speech
speech? Can effective artificial speech be pro-
sounds. Currently, the prototype aids employ
vided for book-reading systems for the blind
frequency analysis, zero-crossing analysis, and
and for persons who cannot speak intelligibly?
digital processing of speech. The analyzed in-
A more recent possibility is to provide systems
formation is presented to the user by a sensory
for control by voice, to satisfy manual and Ibco-
display. Tactile displays have the advantage
motor needs of the motor-handicapped.
that they can be worn under clothing and would
We discuss certain issues in this field from a
not require the user's visual attention, an im-
critical point of view. First, we briefly character-
portant point if an aid is to be used on deaf in-
ize the major types of communication problems
fants. Visual displays have the advantage that
that need to be alleviated through speech-
visual stimulation is better understood than
processing and cite some of the devices cur-
tactile; furthermore, visual speech patterns can
rently under development or test. We do not
easily be portrayed for training purposes by
discuss analogue signal amplification (hearing
sketches, photos, or overlays. A third kind of
aids) these are covered in the preceding chapter
presentation is through hearing but with the
of this volume (but see certain gray-area studies,
sound patterns transformed in some manner
refs. 1 and 2). We do not describe all research
deemed to improve perception by a hearing-
activities; these have been covered in recent
impaired person. This approach, which we call
reviews (3-6) and in published proceedings of
auditory recoding, has the advantage that speech
conferences (7-11). After characterizing the
is normally received by ear and, with conserva-
various speech-processing schemes, we point
tive transforms, the method might minimize the
out certain general problems for the field that
problems of learning to perceive speech in
are inherent in the nature of speech and sensory
terms of totally new sensory patterns.
systems, and we speculate about the optimal
Current aid designs employ one of four differ-
solutions.
ent approaches to the speech-reception problem.
The communication goals to be met by
speech-processing aids are: (a) speech reception
Spectral Method
for hearing-impaired persons, (b) speech feed-
back for hearing-impaired and speech-handi-
A set of filters or other spectrum-analyzing
capped persons, (c) control by voice for the
circuitry continuously derives data about the
motor-handicapped, and (d) effective speech
amplitude-frequency patterns of the sound
299
300
SPEECH PROCESSING AIDS
received. These patterns are presented on an
the size factor of the vocal passages, and a simi-
array of visual or tactile stimulators. Examples
lar ratio exists approximately between women
of systems using the spectral method are the
and men. Hearing-impaired persons often have
Bell Labs Visible Speech Translator (12,13)
better hearing in the mid-frequency range than
and the Tactile Vocoder (14-18).
in high-frequency range, and better low-fre-
quency hearing than mid-frequency; they often
Feature Method
report that men are easier to understand than
women and women than children. A study of
A processed version of the spectral informa-
hearing aid characteristics found male speakers
tion is presented, attempting to emphasize those
to be much more intelligible than females (23).
sound features that correspond to important
Electronic systems are now available that
articulatory features of speech, such as stop,
provide adjustable frequency-division in real
fricative, nasal/nonnasal. and voiced/unvoiced.
time.' The amount of frequency division that
These features are difficult or impossible to
should be used may depend greatly on individual
identify by watching the visible articulatory
hearing characteristics. A recent study of
movements of speech (lip- or speechreading).
moderate amounts of frequency division showed
Examples of feature-displaying systems are
improved word-reception for only a few of the
the visual Upton Eyeglass Speechreader
listeners and for only a limited number of experi-
(19,20) and a tactile system tested by Miller
mental conditions (24).
et al. (21).
Transposition to the low frequencies of a
limited high-frequency region (above 4,000
Lip-linked Method (Cued Speech)
Hz) is a second type of auditory recoding. Tests
of this method showed improvements in frica-
This method presents code symbols for
tive consonant reception (25,26).
speech-sound groups that require lipreading for
Radical auditory recoding has not generally
resolution within the group. For example, for
been proved advantageous (27,28).
one symbol a consonant group is [sh, Γ, 1] and
a vowel group is [ee, oh, ah]; this symbol thus
SPEECH FEEDBACK AIDS
defines nine consonant-vowel combinations
[shee, shoh, shah, ree, roh, rah, lee, loh, lah].
Feedback of speech is important in the acqui-
among which the lipreader can distinguish. A
sition and maintenance of speech skills. Effec-
group does not represent a sound-pattern code
tive feedback might enable a deaf infant to
that can function without any other sensory in-
develop speech and, for persons deafened later
put as can the displayed patterns of the spectral
in life, it could serve to maintain the quality of
method and feature method. Because each
speech. The above speech reception aids may
symbol represents a consonant-vowel combi-
also function in monitoring one's own speech
nation, the rate of symbol-presentation is lower,
but many of the above systems were conceived
on the average, than for the feature method. but
especially as wearable speech-reception aids.
the number of symbols is greater (8 versus 5
In addition, special speech-teaching or cor-
or 6). There is one lip-linked system, Cornett's
recting aids have been developed. The speech-
Automatic Cuer (22), now being tested.
analysis principles are the same as for reception
aids. Both spectral and feature methods have
Auditory Recoding Method
been used. The displays are visual except for
Automatic frequency division is one method
one tactile voice-pitch display (29). Teaching
aids can use sensors that are held on the throat
of auditory recoding that attempts to take ad-
to monitor the glottal action of voiced sounds
vantage of the ability of the auditory system to
and the lack of it for unvoiced sounds (30,31).
normalize the frequency patterns of speech. as
Similarly, the nasal/nonnasal feature can be
is done when perceiving the speech of small
children versus women versus men. The fre-
quency patterns of women are approximately
20% lower than those of children because of
Varispeech Systems, Lexicon, Inc., Waltham,
Mass.
SPEECH PROCESSING AIDS
301
sensed by an accelerometer placed on the side
strain their own vocabularies to keep within
of the nose.
what the recognizer had been taught. Also, the
Examples of speech feedback aids are the
number of correspondents would have to be
spectrum analyzer LUCIA and set of pitch,
limited and their versions of the vocabulary
nasality, and S-indicators (32), the voice pitch
would have to be known to the recognizer.
trainer FLORIDA (33), and a TV-based system
(34). One system under test provides several of
THE PROBLEM OF THE SPEECH CODE
the above indications (separately) for computer-
controlled training-programs (30).
Thus far, the success of visual and tactile
speech aids and of radical auditory recoding
SPEECH-RECOGNIZING CONTROL
has been rather limited. Perhaps this is be-
SYSTEMS FOR THE
cause most of the experiments have not em-
MOTOR-HANDICAPPED
ployed efficient training that extended over a
period of years (17). On the other hand, one can
Speech-recognizing machines have been de
argue that, to be widely adopted, speech-
signed that perform adequately for constrained
processing aids should not require such ex-
communication, particularly if only a few talkers
tensive training. Ideally, they should work well
are involved, only a small vocabulary is needed,
without undue learning effort. To develop such
and if the words to be recognized are spoken
optimal aids, we must consider certain basic
separately (35,36). This development provides
aspects of the problem that are inherent in the
the potential for voice-control systems for
nature of speech communication and sensory
handicapped persons who can speak but other-
perception. These problems concern the speech
wise cannot move very usefully. The user can
code and perceptual organization.
speak letters or words to be typed by a type-
The nature of the speech code is a major diffi-
writer. The system could dial the telephone or
culty. Consider that the slow progress with
move a wheel-chair. A prototype has been de-
speech aids stands in marked contrast to that of
veloped (37).
the useful Optacon tactile print-reader for the
blind (40). There has been much more effort
SPEECH SYNTHESIZERS FOR THE
on speech aids than on the Optacon project. I
HANDICAPPED
think this discrepancy in speed of development
is due to the highly encoded nature of speech.
Speech synthesis from a phonetic symbol
Unlike printed letters, the code of speech is not
input (synthesis by rule) has been under re-
alphabetic. Each unit of speech is encoded in
search and development since the late 1940s as
terms of the identity of adjacent units and in
a means of studying the basic nature of speech
terms of the stress-intonation patterns of the
communication and for application to book-
language. Thus, the perfect decoding of any
reading for the blind (38). Speech synthesis may
stream of speech must be a very complex
also prove to be an aid for the speech-handi-
process. Intensive research is being carried out
capped. Some initial test-uses of a computer-
on this problem and progress is being made
controlled synthesizer for neurologically mute
(35,36).
persons are under study (39).
Persons with profound deafness of early
SOME SPECULATIONS ON THE
onset often fail to acquire speech that is in-
PERCEPTUAL PROBLEMS
telligible to a normal listener. However, speech
training of these persons may develop fairly
Speech behavior probably evolved bio-
stable articulatory patterns recognizable by a
logically together with auditory mechanisms
speech recognition machine. This, together with
that became specialized for speech perception.
a synthesizer, would provide communication
Recent findings in anthropological phonetics
with normal-hearing talkers. Much would
suggest that socially effective vocal anatomy is
depend on both how many recognizable utter-
responsible for the evolution of human speech
ances the deaf user could produce and the de-
(41,42). In addition, there is evidence that the
gree to which his correspondents could con-
auditory system possesses innate sound-pattern
302
SPEECH PROCESSING AIDS
detectors specific to human speech features
to receive speech to a useful degree by feeling
(43). Human hearing may be highly specialized
the speaker's lips, jaw, and larynx (Tadoma
for speech perception (44,45). Similarly, the
method) (45). Here, as in lipreading, the articula-
patterns of speech may have been functionally
tory information is directly available. Are there
selected in evolution to match auditory capaci-
other tactile patterns that would have constancy
ties. Hearing and speech together form a highly
properties corresponding to articulatory con-
robust system of coded communication capable
stancies?
of almost infinite flexibility of reference and
The salient perceptual characteristics of
meaning attributable, I think, to specialized
touch are not very well understood. Active
evolution.
touch on an object normally functions together
Visual and tactile aids may encounter serious
with movements of the hands (49). Even
interfacing problems caused by biological
passively received touch usually involves move-
incompatability with the speech system. Indeed,
ment of the stimulating object across, or taps to
vision and manual touch themselves have prob-
and from, the skin. Vibration is passively
ably evolved their most salient perceptual
sensible by touch but rarely used functionally.
features to function optimally for behavioral
Human touch probably evolved primarily to
demands that are not at all related to the spoken
function as part of kinesthesis. There are also
language system. This is not to say that visual
kinesthetic aspects to speech (50); it would
and tactile speech aids cannot alleviate speech
thus seem that an optimal tactile speech aid
communication problems: however, I think we
should employ kinesthetic stimuli. The Tadoma
should view the field with a healthy respect for
method apparently is substantially kinesthetic.
the nature of man and his language mechanisms
The tactile vocoders thus far tested have em-
instead of assuming that man possesses a
ployed only passive vibrational displays.
sensory-learning system with unlimited ca-
Auditory speech processing aids, such as
pacities.
frequency dividers and transposers, should be
Human sensory systems appear to be naturally
designed to provide auditory patterns that are
designed to perceive object-constancy in the
articulatorily possible to take advantage of the
external world despite changing stimulus pat-
articulatory constancies that we presume to
terns (47-49). What are the object-constancies
operate in the hearing-system for speech.
of speech? I believe they are the articulatory
patterns. If this is true, a speech aid should try
FURTHER DEVELOPMENT
to present stimulus patterns that are interpretable
AND RESEARCH
on a constancy principle. Examples already
exist in two useful natural aid systems, visual
The usefulness to handicapped persons of
lipreading and the tactile Tadoma method,
voice control and speech synthesis depends on
which sense articulatory patterns rather
the trade-offs between convenience, cost, and
directly.
speech-processing technology. These can now
Visual information about some aspects of
be determined through field-testing programs
speech articulation is available on the face of a
in which prototypes or simulations are used
speaker. This enables lipreading (speechreading)
(38).
to contribute to speech reception by hearing-
2)
Research for speech-processing aids to re-
impaired and normal-hearing persons in noisy
ception and speech production can also benefit
situations. However, there are important articu-
from field testing but, because of the problems
lations of the tongue, velum, and glottis that are
inherent in transforms of speech as noted above,
not visible; this imposes severe limits on lip-
results may often be only a little encouraging
reading. On the acoustic side, the patterns of
and progress may be slow.
speech have no simple relations to the articula-
3) Basic research on tactile stimulation and
tory patterns. Nevertheless, for truly effective
perception is needed. Communication by the
aids we may need to decode from acoustic to
Tadoma method should be studied. Visual codes
articulatory terms (44,45).
should be developed that employ highly salient
These considerations also apply to tactile
visual features for the indication of speech
aids. Deaf-blind "listeners" are sometimes able
features.
SPEECH PROCESSING AIDS
303
Training procedures must be optimized, giv-
19. Pickett, J. M. et al. (1975): Research with the
ing special attention to the feedback conditions
Upton eyeglass speechreader. In: Proc. Stock-
for speech training and correction (51).
holm Speech Communication Seminar, 1974,
Vol. 4, edited by G. Fant. Royal Institute of
Technology, Stockholm. (In press.)
REFERENCES
20. Goldberg, A. J. (1972): A visual feature indicator
1. Pascoe, D. P. et al. (1974): Hearing aid design and
for the severely hard of hearing. IEEE Trans.
Audio Electroac., AU-20:16-22.
evaluation for a presbycusic patient. J. Acoust.
Soc. Am. (Abstr.). 55:461.
21. Miller, J. M. et al. (1975): Preliminary research
2. Villchur, E. (1973): Signal processing to improve
with a three-channel vibrotactile speech-reception
speech intelligibility in perceptive deafness.
aid for the deaf. In: Proc. Stockholm Speech
J. Acoust. Soc. Am., 53:1646-1657.
Communication Seminar, 1974, Vol. 4. edited by
3. Levitt, H. (1973): Speech-processing aids for the
G. Fant. Royal Institute of Technology, Stock-
deaf: An overview. IEEE Trans. Audio Elec-
holm. (In press.)
troac., AU-21:269-273.
22. Cornett, R. O.: Automatic Cuer Project. Cued
4. Pickett, J. M. (1971): Speech science research
Speech Program, Gallaudet College, Washing-
ton. D.C.
and speech communication for the deaf. In:
23. Medical Research Council, Great Britain (1947):
Speech for the Deaf Child: Knowledge and Use,
edited by L. E. Conner. A. G. Bell Association,
Hearing Aids and Audiometers. Her Majesty's
Washington, D.C.
Stationery Office, London, Special Report Series
261.
5. Kirman, J. H. (1973): Tactile communication of
24. Mazor. H. et al. Moderate frequency transpo-
speech: A review and analysis. Psychol. Bull.,
80:54-74.
sition for the moderately hearing-impaired. Report
No. 8. Communication Sciences Laboratory,
6. Nickerson, R. A. (1975): Speech-Training and
Doctoral Program in Speech Sciences, Graduate
Speech Reception Aids for the Deaf. Report
Center, City University of New York, New York.
2980, Bolt Beranek and Newman, Cambridge,
25. Foust, K., and Gengel, R. (1973): Speech dis-
Mass.
crimination by sensorineural hearing-impaired
7. Levitt, H., and Nye, P. W. (Eds.) (1971): Sensory
persons using a transposer hearing aid. Scand.
Training Aids for the Hearing Impaired. National
Audiol., 2:161-170.
Academy of Engineering. Washington, D.C.
26. Johansson, B. (1966): The use of the transposer
8. Stark, R. E. (Ed.) (1974): Sensory Capabilities
of Hearing-Impaired Children, University Park
for the management of the deaf child. Int. Audiol.,
5:362-371.
Press, Baltimore.
9. Fant, G. (Ed.) (1972): Proceedings of Symposium
27. Piminov. L. (1968): Technical and physiological
on Speech Communication Ability and Profound
problems in the application of synthetic speech
Deafness, Stockholm, 1970, A. G. Bell Associa-
to aural rehabilitation. Am. Ann. Deaf, 113:275-
tion, Washington, D.C.
282.
10. Fant, G. (Ed.) (1975): Speech and hearing defects
28. Ling, D. (1969): Speech discrimination by pro-
and aids. In: Proc. Stockholm Speech Communi-
foundly deaf children using linear and coding
cation Seminar, 1974, Vol. 4. Royal Institute of
amplifiers. IEEE Trans., AU-17:298-303.
Technology, Stockholm. (In press.)
29. Willemain, T. R., and Lee, F. F. (1972): Tactile
11. Pickett, J. M. (Ed.) (1968): Proceedings of
pitch displays for the deaf. IEEE Trans. Audio
Conference on Speech-Analyzing Aids for the
Electroac., AU-20:9-16.
Deaf, Am. Ann. Deaf, 113:116-330.
30. Nickerson, R. A., and Stevens, K. N. (1973):
12. Potter, R. K. et al. (1947): Visible Speech. Van
Teaching speech to the deaf: Can a computer
Nostrand, New York.
help. IEEE Trans. Audio Electroac., AU-21:445-
13. House, A. H. et al. (1968): Perception of visual
455.
transforms of speech stimuli: Learning simple
31. Fourcin, A., and Abberton, E. (1974): The Laryn-
syllables. Am. Ann. Deaf. 113:215-221.
gograph and the Voiscope in Speech Therapy.
14. Pickett, J. M. (1963): Tactual communication of
Phonetics Dept., University College, London.
speech sounds to the deaf: Comparison with
lipreading. J. Speech Hear. Dis., 28:315-330.
32. AB Specialinstrument, POB 270 66 S-102 51,
Stockholm, Sweden.
15. Pickett, J. M., and Pickett. B. H. (1963): Com-
munication of speech sounds by a tactual vocoder.
33. Saber Foundation, P.O. Box 1055, Cocoa Beach,
J. Speech Hear. Res., 6:207-222.
Florida.
16. Kirman, J. H. (1974): Tactile perception of
34. Center for Communications Research, 50 W.
computer-derived formant patterns from voiced
Main St., Rochester. New York 14614.
speech. J. Acoust. Soc. Am., 55:163-169.
35. Hill, D. R. (1972): An abbreviated guide to plan-
17. Engelmann, S., and Rosov, R. (1975): Tactual
ning for speech interaction with machines: The
hearing experiment with deaf and hearing sub-
state of the art. Int. J. Man-Machine Studies,
jects. Exceptional Children. 41:243-253.
4:373-410.
18. Goldstein, Moise (1974): Personal communi-
36. Newell, et al. (1973): Speech Understanding
cation.
Systems. Elsevier, New York.
304
SPEECH PROCESSING AIDS
37. Glenn, J., Scope, Inc., Reston. Virginia.
grams hard to read? Am. Ann. Deaf. 113:127-
38. Nye, P., Haskins Laboratories. New Haven,
133.
Connecticut. Jonathan Allen. Research Labora-
45. Liberman. A. et al. (1967): Perception of the
tory of Electronics, Massachusetts Institute of
speech code. Psychol. Rev., 74:431-461.
Technology, Cambridge, Massachusetts.
46. Alcorn. S. (1945): Development of the Tadoma
39. Eulenberg. J., Computer Science Dept., Michigan
method for the deaf-blind. J. Exceptional Chil-
State University, East Lansing, Michigan.
dren, 11:117-119.
40. Telesensory Systems. Inc., Palo Alto. California.
47. Gibson, J. J. (1966): The Senses Considered as
41. Lieberman, P. (1975): On the Origins of Lan-
Perceptual Systems. Houghton Mifflin. Boston.
guage. Macmillan, Riverside. N.J.
48. Gibson, J. J. (1963): The useful dimensions of
42. Lieberman, P. (1974): On the evolution of lan-
sensitivity. Am. Psychologist, 18:1-15.
guage: A unified view. Cognition. 2:59-94.
49. Gibson, J. J. (1962): Observations on active
43. Eimas, P., and Morse. P. (1974): Infant speech
touch. Psychol. Rev., 69:477-491.
perception. In: Language Perceptives-Acqui-
50. Bishop. M. et al. (1972): Orosensory perception
sition, Retardation and Intervention, edited by
in the deaf. Volta Rev., 74:289-298.
R. L. Schiefelbusch and L. L. Lloyd, section I.
51. Risberg, A. (1969): A critical review of work on
University Park, Baltimore.
speech-analyzing hearing aids. IEEE Trans.
44. Liberman, A. et al. (1968): Why are spectro-
Electroac., AU-17:290-297.
SCIENTIFIC EXHIBIT: ASHA CONVENTION. 1975. BOOTH M
THE PROGRAMMING FOR AUDIOLOGIC HABILITATION
HENRY TOBIN
Department of Audiology and Speech
Gallaudet College, Washington, D.C. 20002
exhibit presents a machine learning program-
channel as the testing or training material or on a
approach to Audiologic Habilitation. The Unit
separate channel. If we are going to use different
developed to provide systematic opportunities
items for each trial, we need to assign each item to
look and listen, listen alone, or look alone
its appropriate class and number category if we are
ctivities with user feedback features. As inputs the
interested in the type of confusions that are made.
can accept all forms of tape recorded presenta-
including language master and video-tape. For
In presentation of materials we follow a pre-test,
output the user can select a headset, TV monitor,
training, and post-test format. In the pre-test condi-
speaker, vibrator, induction coil or various com-
tion a light will come on only if the correct item is
nations of these devices to achieve the desired
selected. The same feedback arrangement is used
egree of redundancy and the specific goals of the
for the post-test condition. Several feedback
aining program.
arrangements can be used for training. For training
we can start with 100% feedback where the appropri-
features of the unit include a response panel
ate button lights up no matter which item is selected.
oviding up to eight alternatives (the orange
uttons), an accumulating percent correct indicator,
Another approach we find useful in training is the
counter, confidence rating selectors (the two
second best guess approach. Many times an indivi-
ellow buttons), its associated four-celled decision
dual is close to the right word if it isn't this, it must
atrix used for determining and modifying listener
be that. We can program this kind of listening ex-
sponse criterion, and a 64-cell confusion matrix for
perience in the following way: the word is said, the
splaying error patterns.
listener selects the wrong response; the word is said
again, the listener gets the item right or wrong, if he
of the major problems of audiologic habilitation
gets it right the light comes on, if he gets it wrong, no
the manner in which we present signals for the
light comes on, in either case the signal can be
aining of hearing impaired persons. We want the
presented a third time with the correct response
earing impaired individual to utilize the information
shown. We find this a useful way to determine
speech, as well as non-speech signals, to the
which items sound alike to the listener.
reatest extent possible. We are particularly con-
about his ability to extract linguistic informa-
The items that are confused are displayed on the 8 by
from his degraded speech input. To most
8 matrix on the side panel. A clinician or teacher
fectively do this the hearing impaired individual
using this information should be able to modity the
systematic listening opportunities that clearly
audiologic habilitation program to meet the evident
ganize language according to its basic structure.
needs of the listener.
addition the listener needs immediate feedback
information about his decoding capabilities and
The step or trial counter helps the listener to know
ogress. It is our experience that the hearing im-
where he is in the program.
listener wants to monitor his own progress
determine how well he can or cannot do himself.
The % correct indicator. although interesting to the
user, is often a misleading value. Because of the
develop a program to be used through the re-
strong psychologic element invoived in responding,
device a clinician or teacher must first select
we have found it useful to monitor this aspect of re-
class of materials that will be opposed. For ex-
sponse. To do this we ask the listener to rate his
we might want to work on stress, length of
confidence in his response. He is asked to do this be-
terance, wave envelope patterns, intoriation,
fore he selects his item answer. A plus indicates
of articulation, place of articulation or non-
confidence, a minus indicates lack of confidence.
guistic sounds. We now must decide on how
Using a response-to-response contingency we are
any items should be opposed on any one trial. We
able to generate the signal detection four-celled
work with as many as eight items in opposition
matrix showing HIT, MISS, FALSE ALARM and
few as two in a minimal pair condition. Each of
CORRECT REJECTION. With a short period of in-
choices must be associated with a different tone
struction the listener can be taught to use the in-
the response unit will know how to identify each
formation in the four cells to help him modify his
A special keyboard with eight slightly differ-
criterion to one that is more appropriate.
tones is employed for this purpose. This is all
Programmed learning should quantitatively and
in the preparation of the tape recorded
qualitatively improve what we are doing in audio-
aterial. The tone can be placed on the same
logic habilitation.
From HUMAN COMMUNICATION AND ITS DISORDERS - AN OVERVIEW
Published by National Institute of Neurological Diseases and Stroke, 1969
TABLE 2-23. Distribution by sub-category of research on
human communication and its disorders: 1965 data from
Science Information Exchange.
OTHER
DEPT. HEW
FEDERAL
NINDS
OTHER NIH
OTHER HEW
ARMED FORCES
VETERANS ADM.
OTHER AGENCIES
NON-FEDERAL
TOTAL
Hearing and Hearing
Impairment
Basic
39
4
I
18
0
8
2
72
Audiological
30 3 I 3 10 0 3 50
Otolaryngology
26 8 2 1 5 0 11 53
Vestibular
13 o 0 12 s 3 4 37
Rehabilitation
0
0
3
0
7
0.
0
10
-
Total
108
15
7
34
27
11
20
222
Deaf and Their
Management
Skills & Ability
2 4 8 0 0 0 0 14
Training & Social
Interaction
0 I 16 0 0 I 0 18
—
Total
2 5 24 0 0 1 0 32
Central Communicative
Processes
Basic
9 11 5 4 0 2 3 34
Nature of Disorders 4 6 6 o 9 0 5 30
Management of
Disorders
5 1 4 0 4 0 1 15
Total
18 18 15 4 13 2 9 79
Language
Nature of Lang.
0 8 0 0 1 16 1 26
Communicative
Features
0 5 I 2 0 1 1 10
Total
0 13 1 2 1 17 2 36
Speech
Basic
13
8
1
9
1
4
0
36
Speech Disorders
10
18
4
0
3
0
2
37
-
Total
23 26 5 9 4 4 2 73
Communicative
Processes
General Speech
and Hearing
3 4 6 0 0 0 1 14
Media
0 0 2 0 0 2 0 4
Interpersonal
Aspects
0 4 1 0 3 3 0 11
-
-
Total
3
8
9
0
3
5
1
29
Grand Total
154
85
61
49
48
40
300
137
437
34
471
From HUMAN COMMUNICATION AND ITS DISORDERS - AN OVERVIEW
Published by National Institute of Neurological Diseases and Stroke, 1969
TABLE 2-10. Estimates of annual direct costs to the
Nation for the education, management and compensation
of the hearing impaired.
Approximate
Cost
Public Residential Schools for Deaf
$55,092,000
Private Residential Schools for Deaf
3,883,000
Special Day Programs for Deaf
and Hard of Hearing
24,190,000
Special Services in Regular Schools
20,000,000
Preparation of Special Teachers
2,700,000
Captioned Films for the Deaf
2,800,000
Vocational Rehabilitation
28,000,000
Preparation of Rehabilitationists
1.200,000
Compensation for Military Disability
45,000,000
Audiological Services for Veterans
1,780,000
Community Hearing and Speech Centers
3,600,000
Speech and Hearing Clinics
6,000,000
Private Medical Care
80,000,000
Hearing Aids and Their Maintenance
132,000,000
Industrial Claims and Hearing Conservation
4,200,000
$410,445,000
21
AMERICAN FOUNDATION FOR THE BLIND, INC.
1660 L STREET, N.W.
WASHINGTON, D.C. 20036
TEL: 202 467-5996
aB
STATEMENT OF IRVIN P. SCHLOSS, DIRECTOR, GOVERNMENTAL RELATIONS OFFICE,
AMERICAN FOUNDATION FOR THE BLIND, TO THE COMMITTEE ON SCIENCE AND
TECHNOLOGY, U.S. HOUSE OF REPRESENTATIVES, ON RESEARCH PROGRAMS TO AID
THE BLIND AND SEVERELY VISUALLY IMPAIRED
September 23, 1976
Mr. Chairman and members of the Committee, I appreciate this opportunity to
discuss research programs to aid the blind and severely visually impaired as
part of your broader study of research programs to aid the handicapped.
In discussing these programs with you today, I am representing three na-
tional organizations in the field of services to blind and severely visually
impaired individuals. They are the American Association of Workers for the
Blind, the national membership organization of professional workers serving
blind persons; American Foundation for the Blind, the national voluntary re-
search and consultant agency in services to blind persons of all ages; and
Blinded Veterans Association, the congressionally chartered membership organi-
zation of the nation's warblinded.
All three of these national organizations are grateful to the Committee
for undertaking this study. It has the promise of focusing the attention of
the scientific, engineering, and technological community on the special prob-
lems of the various components of the handicapped population; of establishing
a coordinated national policy for dealing with these problems; of establishing
central data banks for storage and dissemination of information for the use of
FIELD OFFICES
1660 L Street, N.W., Washington, D.C. 20036
15 WEST 16TH STREET, NEW YORK, N.Y. 10011/TEL.: (212) 924-0420/CABLE ADDRESS: FOUNDATION, NEW YORK
100 Peachtree Street, Atlanta, Georgia 30303
821 Market Street, San Francisco, California 94103
1860 Lincoln Street, Denver, Colorado 80203
127 North Dearborn Street, Chicago, Illinois 60602
2.
researchers, clinicians, and handicapped individuals; of facilitating the
application of scientific and technological developments to the special needs
of the handicapped; and of assuring Federal financial assistance in research,
development, evaluation, manufacture, distribution, and purchase of ameliora-
tive aids and devices when the beneficiary population is so small or the de-
vice so costly as to make development and manufacture by the private sector,
whether nonprofit or commercial, infeasible without government financial
assistance.
THE SEVERELY VISUALLY IMPAIRED POPULATION
Blindness and severe visual impairment are conditions whose handicapping
effects vary with the individual, depending on the degree of remaining useful
sight; the person's ability to use residual sight effectively and efficiently
in the performance of various tasks; the presence of other impairments, such
as loss of hearing or loss of tactual sensitivity; and age. It is estimated
that 90 percent of all information is received by humans through sight. With
loss of sight, humans must rely principally on the sense of hearing followed
by the sense of touch.
The aging process inevitably results in loss of hearing in the high fre-
quency range--the range useful for orientation and mobility for blind persons.
Younger individuals blinded in explosions, such as servicemen blinded in
combat or civilians subjected to bombing or shelling, invariably lose high
frequency hearing from nerve damage as well. Noise pollution in modern urban
centers is accelerating hearing impairment at an earlier age in persons who
may later suffer serious vision loss, as well as in younger blind persons who
would otherwise not incur the same degree of hearing loss until later in
life.
3.
The principal problems resulting from blindness are loss of mobility,
ability to read print, employability, and ability to perform other daily
living activities.
The National Society for the Prevention of Blindness (NSPB) estimates
that there are some 484,000 persons in the United States who are legally
blind. The definition of blindness used in arriving at this estimate is
the same as that used in Section 216(i) (1) of the Social Security Act; i.e.,
central visual acuity of 20/200 or less in the better eye with correcting
glasses, or a contraction in the field of vision to 20 degrees or less in
the better eye if central visual acuity is better than 20/200. The prevalence
rate of legal blindness is 2.25 per 1,000 of population.
The NSPB also estimates that 75 percent of the legally blind population is
40 years of age and older. It also estimates that some 45,000 Americans be-
come legally blind each year and that 75 percent of this number is 40 and
older.
Based on its 1971 household interviews, the National Center for Health
Statistics of the U.S. Public Health Service estimates that there are some
1,306,000 noninstitutionalized individuals in the United States who have severe
visual impairment. The definition of severe visual impairment used in reaching
this estimate was inability to read ordinary newspaper print with the aid of
correcting glasses. The prevalence rate is 6.5 per 1,000.
The National Center estimates that 121,000 of these individuals are under
age 45 (prevalence rate .8 per 1,000), that 276,000 are between the ages of
45 and 65 (prevalence rate 6.6 per 1,000), and that 909,000 are 65 and older
(prevalence rate of 47 per 1,000).
Based on a 1969 survey of 816,000 nursing home patients, the National Center
4.
for Health Statistics found that 36,086 were blind. We have no authoritative
estimates of the number of blind or severely visually impaired individuals in
other types of institutional settings, such as homes for the aged.
The leading causes of blindness in the United States--senile cataracts,
diabetic retinopathy, glaucoma, and macular degeneration--are conditions
which principally affect people over 40. In addition, blindness is sometimes
caused by cardiovascular diseases, such as arteriosclerosis, hypertension, and
stroke, as well as other conditions which frequently accompany the aging process.
Since the prevalence of blindness in the United States in the light of current
scientific knowledge is a function of population growth, we can expect that the
number of older blind persons will increase as the number of older persons in
the population increases.
Of the total estimated population of severely visually impaired persons,
503,000 are male while 803,000 are female. For the age group under 45, approxi-
mately 69,000 are male, and 51,000 are female. For those 45-64, it is estimated
that 119,000 are male, and 157,000 are female. For the group 65 and older,
314,000 are male while 595,000 are female.
In 1971, according to the National Center for Health Statistics, 581,000
severely visually impaired individuals had less than $3,000 annual family income.
Of this number, 427,000 were 65 and older.
This same 1971 survey revealed the following prevalence rates per 1,000 of
population for severe visual impairment on a regional basis--South, 68.2;
Northeast, 39.1; North Central, 38.7; and West, 32.7.
For additional data on the severely visually impaired and individuals with
other impairments, I would refer the Committee, staff, and consultants to
Prevalence of Selected Impairments, United States, 1971, a publication of the
National Center for Health Statistics in the 10-99 series.
5.
Another source of current information on the economic status of severely visu-
ally impaired persons is the Social Security Administration (SSA), which admin-
isters the program of supplemental security income for the aged, blind, and dis-
abled (SSI). According to the SSA, 9% of the approximately 2,280,000 individuals
on the SSI aged rolls, or 205,200 are severely visually impaired, including legal
blindness. The SSA does not presently know how many of this number are legally
blind. We would estimate 82,000. All persons on the SSI aged rolls must be 65
or older to qualify.
Approximately 75,000 legally blind persons of all ages are on the SSI blind
rolls. The median age is 59.
The SSA estimates that 4.7% of the approximately 2,000,000 individuals on the
SSI disabled rolls, or 94,000 persons, are severely visually impaired. The SSA
does not presently know how many of these individuals are legally blind or how
many have other serious disabilities in addition to severe visual impairment.
We would estimate that about 37,600 of the estimated 94,000 severely visually
impaired individuals on the SSI disabled rolls are legally blind. The SSI dis-
abled rolls cover persons of all ages. The median age is 55.
Thus, there are approximately 374,200 severely visually impaired individuals
in financial need serious enough to be eligible for SSI payments. Of that
number, it is likely that approximately 194,600 are legally blind.
No one knows the exact number of totally blind individuals in the United
States. Authorities associated with rehabilitation centers for the blind and
other agencies providing direct services to blind persons estimate that be-
tween 12% and 18% of the legally blind population have no useful vision. There-
fore, we can assume that a maximum of 90,000 persons in the United States are
totally blind or have only light perception without light projection. The rest
have varying degrees of residual sight, which may be useful to them in the
performance of various tasks, especially if the usefulness is enhanced by
optical aids, training in various techniques, and other aids and devices.
6.
EXISTING PFSEARCH PROGRAMS
The major source of financing for biomedical research into the causes, cures,
and prevention of blindness and vision disorders is the National Eye Institute
of the National Institutes of Health, created by Congressional action
through the Public Health Service Act. Research activity by investigators
in a variety of settings continues to go forward; and hopefully, means
will eventually be found to prevent, or substantially retard the progress
of, the major blinding eye diseases.
In addition, the Veterans Administration has an active across-the-board
medical research component, which is substantially smaller in scope and fi-
nancing than that of the National Institutes of Health. The VA's medical
research activity also encompasses prosthetics research; and over the years
since World War II, VA prosthetics research has helped to finance research
and development of various mobility and reading devices for the blind.
To a substantially smaller extent, several national voluntary organiza-
tions finance biomedical research on blinding eye diseases.
Since the middle 1950s, a major source of financing for research and
demonstration projects to enhance the employability of handicapped individuals,
including the blind, has been the Rehabilitation Services Administration and
its predecessor agencies in the Department of Health, Education, and Welfare.
Under the authority of the Rehabilitation Act of 1973 and the predecessor
Vocational Rehabilitation Act, this agency finances research and development
activities to improve rehabilitation techniques as well as to develop devices.
Although the principal focus of this effort is improvement in vocational re-
habilitation and enhancement of employability of individuals with all types
of handicapping conditions, the results of improvement in techniques and de-
velopment of devices frequently have application for handicapped children
and adults not in the normal employable age range.
7.
In addition, the Rehabilitation Services Administration supports the
operation of several rehabilitation engineering centers for various types
of handicapping conditions. There are two which concern themselves with
research, development, and evaluation of devices for the blind and visually
handicapped. They are the Smith Kettlewell Institute of Vision Services at
the University of the Pacific in San Francisco and a center jointly operated
by Harvard and the Massachusetts Institute of Technology.
Since the late 1960s, when it was established by Congressional action, the
Bureau for the Education of the Handicapped in the Office of Education has
financed research and development projects to improve the education of handi-
capped children, including the blind and visually handicapped. Under the
authority of the Education of the Handicapped Act, this agency has financed
projects designed to improve educational methods as well as to develop special
aids and devices to facilitate education of all types of handicapped children.
Devices developed as a result of this activity frequently are useful for
handicapped adults as well.
The Division for the Blind and Physically Handicapped of the Library of
Congress, which administers the program for producing and lending books in
braille and recorded form for the use of blind persons and physically handi-
capped individuals who cannot handle regular printed material, also is in-
volved in research and development activity. The principal source of library
books and magazines in useable form for the blind, the Division's research
and development effort has been primarily focused on improvement of record-
ings and playback equipment to meet the special needs of its clientele.
LOW VISION SERVICES
During the past 20 years, the development of various types of optical lense
8.
systems has made it possible for many legally blind individuals to make use
of residual vision for varying amounts of reading and performance of other
tasks. As a result of low vision aids, some legally blind adults, who had
been educated in schools for the blind as braille readers, are able to read
printed matter extensively.
Typically, better than two out of three patients have been benefitted by
low vision clinics, and this has been accomplished by using readily available
and modestly priced aids. Low vision optical lenses include spectacles, con-
tact lenses, telescopic lenses, microscopic lenses, clip-on lenses, jewelers'
loupes, hand-held magnifiers, stand magnifiers, and hand-held telescopes.
Low vision service is not commonly offered by private practitioners since
most of them have not been trained to recognize and treat low vision as a
special problem. From the standpoint of the private practitioner, proper
low vision service requires an investment in special equipment and additional
office space. It is also financially less attractive than routine eye care
because of the extensive time required for adequate vision evaluation. There-
fore, the most effective delivery system for proper low vision service has been
through low vision clinics or centers operated by hospitals, universities, or
private nonprofit community agencies for the blind.
There are currently 43 cities which have facilities offering comprehensive
low vision services. However, most of these clinics are open only one day a
week; and only 15 metropolitan areas have facilities offering low vision ser-
vice on a regular and continuous basis. Therefore, there is need to provide
financial assistance to assure more continuous service in existing low vision
clinics and to establish new ones if this vital service is to be made readily
available to individuals who can benefit from it.
9.
Low vision service has as its objective the attainment of optimum visual
efficiency in legally blind and severely visually impaired individuals. It
is estimated that more than 80 percent of the legally blind population has
some residual vision. These individuals have generally been ignored or ne-
glected insofar as being provided services which would allow them to function
more efficiently with their residual vision.
In addition to optical lense systems, closed circuit television devices
have been helpful in enabling individuals wih residual useful sight to read.
Reading and Communication Aids
Since the development of optical lense systems and closed circuit tele-
vision just described is relatively recent, and since their availability is
relatively limited, most blind and severely visually impaired persons must
rely on traditional means of reading--braille and sound recordings. As a
result, the amount of printed material readily available to blind and severely
visually impaired persons in braille or recorded form is limited, even with
the aid of organized volunteer effort.
With regard to braille, automated braille production using computers could
substantially increase the quantity of press braille books and periodicals.
I understand that it is technologically feasible to use compositor tapes
commonly used in the printing industry in conjunction with automated computer-
ized braille to produce a substantially wider range of braille publications.
However, since most blind people lose their sight in middle age and later life,
there is a relatively small consumer population who will read braille exten-
sively. Some estimates of the number of braille users are as low as 7% of
the legally blind population.
Most-blind and severely visually impaired persons prefer to do extensive
10.
reading with the use of sound recordings. These have evolved from the long-
playing record at 33-1/3 rpm in use in the Library of Congress Books for the
Blind program between 1933 and the post-World War II years through micro-
grooved pressed records and embossed records at 8-1/3 rpm. In addition,
open reel tapes and currently cassette tapes recorded at 15/16-inch per
second are increasingly being used both in the Library of Congress and volun-
teer programs. Of course, these still require prerecording by a sighted
reader.
I understand that it is technologically feasible to use compositor tapes
in conjunction with a computer to produce a synthetic speech output. Although
a wider range of recorded books could certainly be made available in this
manner, I am not prepared to discuss its economic feasibility in contrast to
the present method of using sighted readers to record master tapes for repro-
duction on pressed records and cassette tapes.
Over the years since World War I, efforts have been made to develop a
practical reading machine for blind persons. Most of these have scanned a
printed page and converted the signal to an audible output, usually requiring
the blind person to learn a code. As a result, reading this way has required
considerable training for limited attainment of reading speed. Thus, devices
of this type have had a very limited appeal for users.
The Optacon, developed and manufactured by Telesensory Systems, Inc., of
Palo Alto, Calif., is a new device which scans printed letters and enlarges
them for tactile reading. I understand that, with training, some blind persons
have achieved reading speeds of 70 words per minute. Although most blind per-
sons will probably not find the Optacon suitable for extensive reading, many
11.
will undoubtedly find it extremely useful for limited reading in education
programs and on the job. I am told that Telesensory Systems is currently
experimenting with a synthetic speech output for the Optacon.
Telesensory Systems also manufactures and sells a talking calculator.
This electronic calculating machine, similar to those used in school and
work situations by sighted persons, has a synthetic speech output which makes
the machine usable by blind persons.
Probably the most promising reading machine on the horizon for blind per-
sons is the Kurzweil Reading Machine. Developed by the Kurzweil Computer
Corporation of Cambridge, Mass., this device is capable of scanning a printed
page and converting print to audible synthetic speech. I understand that it
can read most type styles and that its minicomputer stores an extensive vocabu-
lary. Among the technological improvements which made its development feasible
were miniaturization of computers and substantial reduction in the cost of
manufacturing computer chips.
The Kurzweil Reading Machine is currently being tested and evaluated. When
it is perfected, it would appear to be the ultimate answer to the need of blind
persons to have ready access to the printed word.
Another new development designed to provide blind persons access to the
printed word is the Radio Reading Service.
There are currently about 70 of these Radio Reading Services in the country.
They are operated by state agencies or private nonprofit agencies and have
arranged with FM radio stations in their areas to broadcast their programs.
The broadcasts are carried on one of the FM station's subcarrier bands
and require a pretuned receiver in the home of the blind person using the
12.
service. Most of the FM stations working with Radio Reading Services are
noncommercial educational stations. WETA broadcasting programs of The
Washington Ear is an example in this metropolitan area.
Programming usually consists of reading by volunteers of selected news-
paper stories and editorials, supermarket and department store ads, as well
as books and magazines not already available in recorded form through the
Library of Congress program. Radio Reading Services fill a serious informa-
tion gap, including daily shopping news and in-depth newspaper articles,
for blind persons in their areas.
For communicating with sighted persons in writing, the typewriter is the
ideal device. According to Donald J. Wonderling, Ed.D., efforts to perfect
the typewriter in Britain during the 19th century were motivated by the de-
sire to provide blind persons with a writing aid. I am submitting for the
files of the Committee a copy of the 1972 Blindness Annual, published by the
American Association of Workers for the Blind, which carries Dr. Wonderling's
article beginning on page 203.
Because of its great value throughout life, blind children are taught
typing in school programs at an earlier age than is the case with their
sighted peers. Blind adults in rehabilitation programs are also usually
taught typing as well as braille and the use of contemporary recording
equipment.
With regard to recording equipment, the development of the standard cassette
recorder and pocket-size versions has been of particular value to blind persons,
making it possible for them to read prerecorded material while in transit as
well as to dictate notes. Techniques have been developed to record chapter
headings or other audible signals at a faster speed, so that a blind person
13.
can locate specific passages more rapidly while playing the tape in fast
forward or rewind position.
Another development in connection with tape recordings is the use of com-
pressed speech. Several types of speech compressors have been developed,
and they make more rapid reading of recorded material possible without
distortion.
MOBILITY AIDS
As we have previously indicated, loss of mobility is one of the major
handicapping effects of blindness. This will vary with the amount of residual
useful sight and the individual's ability to use it efficiently.
There are currently three major ways for a blind person to achieve
mobility--use of a sighted guide, use of a dog guide, and use of a cane.
The latter two techniques for achieving mobility require specific detailed
training by a competent professional.
The Seeing Eye, the first and one of the foremost dog guide schools in the
United States, requires one month of intensive residential training of the
blind person with his dog guide under professional supervision. Studies fi-
nanced by the Seeing Eye indicated that only a very small percentage of blind
persons were suitable candidates for using a dog guide. Because dog guides
move at a very rapid pace, age and attendant infirmities make the bulk of the
blind population unsuitable candidates for dog guide use without serious risk
to the person's health. Similarly, reputable dog guide schools will not
accept trainees younger than 16 or 18 because of the degree of emotional
maturity and responsibility required to properly care for a dog guide.
Even the use of a sighted human guide requires knowledge of some basic mo-
bility techniques, in order to make the experience a pleasant one for the
guide and a safe one for the blind person.
14.
For many years, the cane has been the principal mobility device used by
blind persons with techniques evolved by the blind individual himself on the
basis of personal experience. However, during World War II, then Lt. Richard E.
Hoover, a member of the staff at the Army's Valley Forge General Hospital,
Phoenixville, Pa., where newly-blinded soldiers and airmen were sent, developed
a new technique for use of the cane. This involved use of a long, lightweight
metal cane in a specific way while walking in order to assure the blind person
maximum safety. The Hoover long cane technique combined with specific instruc-
tion in orientation and the use of auditory and olfactory cues, as well as
tactile information relayed by the cane itself, revolutionized independent
cane travel by blind persons.
Refinements in techniques, the cane itself, and instruction methods at Veterans
Administration rehabilitation centers for blinded veterans since 1948 have re-
sulted in wider acceptance of these methods in rehabilitation programs serving
nonveteran blind persons. In addition, professional preparation of the mobility
therapist who teaches the blind person has been institutionalized in a number
of universities at the master's degree level and in others at the bachelor's
degree level. The use of the traditional, short, white wooden cane and haphazard
learning of mobility techniques by the blind person himself are things
of the past for blind children in some education programs and for blind adults
accepted for some vocational rehabilitation programs. Serious gaps still re-
main in the universal availability of quality mobility training.
H.R. 5546, the Health Professions Educational Assistance Act of 1976, which
was sent to the White House this week, will authorize the professional training
of mobility therapists for the blind as allied health personnel under the Public
Health Service Act. Other university training programs for mobility therapists
15.
are being financed by the Rehabilitation Services Administration and the
Office of Education.
We believe that the only way to assure universal availability of mobility
therapy services for blind persons of all ages is through a comprehensive na-
tional health insurance program. We hope that the Congress will include these
services in any action it takes on national health insurance or expanded medi-
care programs in the coming years. By so doing, it will recognize rehabilita-
tion to restore a blind patient to maximum functional independence as part of
the health services continuum just as it was for blinded servicemen in Army
hospitals during World War II and in VA facilities since then.
At the end of World War II and in several of the years following, the Signal
Corps worked on a guidance device to aid blind people in mobility. This device
emitted a beam of light which detected and notified the user of obstacles by
means of an auditory signal or vibration in the handle. The pitch and speed
of the audible signal and the frequency of the vibration indicated the distance
from the obstacle.
Since then, more sophisticated electronic guidance devices have been de-
veloped, using laser beams, ultrasonic beams, and other forms of light or sound
waves. The basic principle is the same as that of the original Signal Corps
device--obstacle detection and translation of the message into auditory or
vibratory signals, or both. Some devices project beams up, down, and straight
ahead to detect head level obstacles and step downs, as well as those in front
of the user. Vibratory output devices are particularly useful to deaf-blind
persons.
In most instances, these guidance devices are regarded as environmental sensors
to supplement a properly used cane as the primary mobility device. In all cases,
16.
the blind person must be trained in their use and in the proper interpretation
of the messages received by a professional orientation and mobility therapist,
himself trained to know the capacity and limitations of the device and to
teach the blind user how to interpret messages.
I am submitting for the use of the Committee a copy of the December 1975
issue of The New Outlook for the Blind, which contains an article beginning
on page 433 describing various types of electronic mobility devices and en-
vironmental sensors.
OTHER AIDS AND DEVICES
Various aids and devices are available from a variety of sources to assist
blind and severely visually impaired persons to accomplish a number of ordinary
tasks without sight. These include braille watches and alarm clocks, pressure
cooker gauges and electric frying pan dials modified for touch reading, braille
playing cards and other games adapted for touch reading, micrometers and calipers
similarly adapted, braille slide rules, linear measuring devices, and the like.
I am submitting for the files of the Committee a copy of the latest aids and
appliances catalogue of the American Foundation for the Blind, which sells many
of these aids on a mail order basis at our headquarters in New York City. I am
also submitting a copy of the Foundation's International Catalog, which lists
aids and devices available from sources in other countries. The present Inter-
national Catalog will shortly be superseded by a revised edition.
Science for the Blind, Bala-Cynwyd, Pa., is an organization interested in
facilitating science education for blind students, science information for
blind scientists, and the distribution of special devices useful to blind
scientists. These devices include light probes, meter readers and liquid-
level measurement aids. I am submitting a copy of this organization's catalog
17.
for the files of the Committee.
SIGHT SIMULATION
In recent years, there has been some research effort to develop sight simu-
lation devices. Some of these use a camera device which traces the outline of
the image on the user's back. There have been newspaper accounts of research
involving electrode implants in the sight center of the brain. I am not aware
of any pronounced progress in this area of research.
Some scientists believe that electronic stimulation of the sight center of
the brain, coupled with a camera mechanism, will ultimately be possible. It
is likely that more basic research in neurophysiology and the physiology of
seeing will be needed before this can be successfully accomplished.
SPECIAL NEEDS
An obvious special need is for the development of a binaural hearing aid
which can give blind persons with hearing impairment directional hearing for
mobility purposes. I am told that such a device is technologically feasible.
Since many blinded veterans also have varying degrees of impaired hearing,
the Veterans Administration should be asked to take the leadership in develop-
ing such a device. The three blind rehabilitation centers at VA hospitals are
ideal settings for testing and evaluating this kind of hearing aid from the
standpoint of patients and qualified professional staff in orientation and
mobility, audiology, and other appropriate disciplines.
Another obvious need is the development of a lightweight, collapsible cane
which will remain rigid when in use, will not develop wobbles with repeated
use, and will telescope or fold for insertion in a pocket after the user reaches
his destination.
There is also need for an adequately financed and staffed central facility
18.
to develop aids and devices on a custom basis to meet special needs.
One of the special needs is development of a device which will enable blind
diabetics to make essential tests of their urine for glucose levels independ-
ently and accurately. I understand that the Smith Kettlewell Institute at
the University of the Pacific is working on the development of such a device.
We hope that it will be successful in this endeavor.
As a prerequisite to development of central data banks for storage and dis-
semination of information about research developments, there is need to develop
a glossary-thesaurus of terms used in the blindness and visual impairment system.
The American Association of Workers for the Blind, American Foundation for the
Blind, and Association for the Education of the Visually Handicapped are jointly
planning this project and exploring possible sources of financing.
STATE-OF-THE-ART REPORTS
Although some of the publications we have submitted are by no means state-
of-the-art reports, we believe they will be helpful in giving the Committee,
staff, and consultants some idea of developments in technological aids useful
for the blind and severely visually impaired. In addition, we would recommend
that the Committee obtain the following publications not readily available to
us from the National Academy of Sciences:
Selected Research, Development and Organizational Needs to Aid the
Visually Impaired, National Academy of Engineering, Washington,
D.C., May 1973;
Sensory Aids for the Blind, Publication No. 1691, National Academy of
Sciences, Washington, D.C., 1968;
Sensory Aids for the Handicapped: A Plan for Effective Action, prepared
by the Subcommittee on Sensory Aids, Committee on the Interplay of
Engineering with Biology and Medicine, National Academy of Engineering,
December 1971;
An Assessment of Industrial Activity in the Field of Biomedical Engineering,
report of the Task Group on Industrial Activity of the Committee on
19.
the Interplay of Engineering with Biology and Medicine. National
Academy of Engineering, Washington, D. C., 1971;
Proceedings of the Conference on Evaluation of Mobility Aids for the
Blind, P. W. Nye (Ed), National Academy of Engineering, Washington,
D.C., 1971.
The report of a conference held at Woods Hole Institute in Massachusetts
in the summer of 1975 is not yet available. We will try to obtain a copy
for the Committee as soon as it is.
LEGISLATIVE RECOMMENDATIONS
One of the major problems of researchers is obtaining adequate financing.
We believe that better utilization of the contract mechanism for directed
research and development would be helpful. This may require amendments
to appropriate legislation.
There is also need for better coordination of technological research and
development for the handicapped. Public Law 94-282, National Science and
Technology Policy, Organization, and Priorities Act of 1976, provides the
logical mechanism for accomplishing this. We would recommend amendments to
specifically delineate the role of the Office of Science and Technology
Policy in the Executive Office of the President with regard to the needs of
the handicapped. Similarly, participation by handicapped consumers and
professionals working with them in the work of the Intergovernmental Science,
Engineering, and Technology Advisory Panel, the President's Committee on
Science and Technology, and the Federal Coordinating Council for Science,
Engineering, and Technology would assure that proper attention is given to
the special needs of handicapped persons.
A serious shortcoming in the development of technological aids and devices
is the absence of venture capital to finance the production of sufficient
20.
quantities of devices for adequate testing and evaluation as well as for
their subsequent manufacture. This is frequently the case because of the
small potential market for many devices, the possible high cost of their
manufacture, or a combination of both. We would recommend establishment
of a Federal agency similar to the Small Business Administration devoted
exclusively to the financing of devices for the handicapped through guaran-
teed loans and direct low interest loans.
CONCLUSION
In conclusion, we would like once again to express our appreciation to
the Committee for undertaking this study of research and development needs
in the special area of technological aids to improve the functioning of handi-
capped individuals. We believe that the scope of the study justifies its
continuation during the next Congress in order to assure adequate time for
a comprehensive evaluation of needs and implementation of recommendations.
We would like to emphasize the importance in any research and development
effort to assist handicapped persons of involving the handicapped themselves
as well as professionals who work with them, so that research activity can
be focused on genuine and significant needs. In addition, we would like to
stress the importance of developing devices which supplement and complement
the existing capacities of the human beings for whom the devices are being
developed. Devices which duplicate or obscure innate human capacity are
wasteful and will not be used.
The frontiers of scientific and technological knowledge are continually
being extended. The Committee study should materially assist the handicapped
by focusing on the possibility of utilizing new developments to meet their
special needs.
TESTIMONY SUBMITTED TO
THE COMMITTEE ON SCIENCE AND TECHNOLOGY
OF THE UNITED STATES HOUSE OF REPRESENTATIVES
by Mr. André Dessertine
Director General of INTER-ACCENT
16, rue Hamelin, Faris
Allow me to say first of all that it is a great honor and a privilege
for me to testify before your Committee at the invitation of your Chairman,
Mr. Olin Teague. I should like to take this opportunity to extend to the
Congress and the people of the United States of America the greetings of the
handicapped in France and Europe who have so often sought in the achievements
of your country the means to convince their respective governments of the need
to take certain appropriate measures.
*
*
*
My testimony is the result of collective reflection that was consider-
ably extended last March during an international congress held at Cannes,
when we had the pleasure of welcoming to our French Riviera outstanding Ameri-
can experts and leading specialists who had come from over thirty different
countries to demonstrate, and I think for the first time, the importance that
should be given to psychological and socio-economic factors in the field of
rehabilitation.
In introducing this report, allow me to recall that any physical handi-
cap (motor, sensory, or visceral) always leads to a lessening of independence:
impairment or impossibility to move freely, to perform certain activities of
daily life alone, to carry out various vital functions without someone else's
help. The process of rehabilitation designed to correct this handicap is
therefore aimed at enabling the individual to regain his independence and some
measure of autonomy. Its object is to overcome certain obstacles, which we
must first define, and this study should enable us to identify the main ele-
ments of sound rehabilitation.
A - Obstacles to be overcome
The objective assessment of disability does not suffice to define the
final objectives of a rehabilitation process. Daily experience shows that a
- 2 -
number of factors, which may be grouped under three headings, have to be
taken into account: those related to the handicapped person, those related
to the physical environment into which he will have to reintegrate himself,
and those related to the psychosociological and economic aspects of his en-
vironment.
1) Factors related to the handicapped person
The first of these factors is the handicap itself, which may be per-
ceived objectively: paralysis of a given limb, amputation of a leg or an arm,
total or partial blindness, functional disorder of a vital organ. This most
obvious and specific aspect has led to the classification and categorization
of the handicapped and handicaps. But that does not mean that such a classi-
fication is sufficient for the understanding of the handicapped himself; for
it must be remembered in this connection that the personality structure of the
handicapped is no different from that of an able-bodied person and that the
disability must be considered only as one of the causes of a possible inadapta-
tion. The disability alone does not lead to or define inadaptation, which may
have many other causes.
The correct evaluation of the handicap must therefore take into account
a number of factors other than those limited to the medical description of
the disability:
- nature of the handicap:
consolidated or in evolution, apparent or
concealed;
- origin of the handicap:
acquired or congenital disability, accident
or illness;
- moment at which the
disability occurred:
when the handicapped person was a child or
an adult;
- details of the handicapped: age, sex, personality prior to the occur-
rence of the handicap, socio-cultural level, etc.
In addition, when assistive devices are required, it will be necessary to seek
the conditions that would enable the lived experience of the assistive device
to be integrated into the lived experience of the handicap.
2) Factors related to the physical aspects of the environment
It is commonplace to state that the physical environment is usually in-
adapted to the needs of the handicapped. The most obvious inadaptation results
- 3 -
from what have been called architectural barriers, that is to say, the obsta-
cles in the man-made environment that persons with impaired mobility have to
meet. It is easy to show how impossible it is for the handicapped to move
about in the street, to find housing where they can carry out the activities
of daily life alone, to enter public buildings to fulfil the most usual ad-
ministrative formalities, and to use public transport. These are all obsta-
cles to effective reintegration whatever efforts may have been made to ensure
efficient functional rehabilitation. The same difficulties will be found with
going back to work, and aggravated further by the inadaptation of jobs or by
the possible inadaptation of machines whose utilization is narrowly limited
in terms of the gestures or type of perception required.
3) Factors related to the socio-economic and psychosociological aspects
of the environment
Here again, a number of factors will be instrumental in aggravating in-
adaptation or, conversely, in facilitating reintegration: the role of the
family, the extent of acceptability of the handicapped by his social group,
the general conditions of his immediate environment, the economic and techni-
cal stage of development of his country of origin. In this connection, two
problems seem to me of particular importance: the problem of the distinction
to be drawn between the developed and the developing countries and the problem
of how the threshold of acceptability of the handicapped within each group
could be raised. In fact, the psychological barriers existing between the
handicapped and his possibility of social integration and of finding work are
more serious than the technical barriers that are sometimes no more than a
pretext and are often carefully nurtured.
It would be possible to dwell at length on each of the points just men-
tioned and to illustrate them by concrete examples. Our main purpose, how-
ever, is to insist on the risks of over-simplification that would conceal the
complexity of the facts involved. All those concerned in the process of re-
habilitation have or may one day have experiences that illustrate this com-
plexity, such as for instance the case mentioned recently in a French working
group concerning the satisfactory professional reintegration of a totally
blind person and the failure of all attempts to find work for a practically
blind person although his handicap was not of a very serious nature. From
this point, we can now try to define the means to use in the general process
of rehabilitation.
- 4 -
B - The means of rehabilitation
1) For the physically handicapped the starting-point of the process of rehabili-
tation remains functional rehabilitation. It is to be noted in this connection
that the clinical aspects of the handicap have given a medical connotation to
the process of rehabilitation, which should be deplored if it excluded all the
others. It would be absurd to question the role of the medical specialist re-
garding functional rehabilitation, but the equation "handicap = disease" must
be as firmly avoided as the equation "handicapped = inadapted." Rehabilitation
should neither be given a purely medical aspect or as purely psychiatric
aspect. It is important that this be know, and the risk mentioned above is far
from being avoided at present in our society. I should like to recall in this
connection that the United Nations Secretariat refused to include the problems
of accessibility of persons with reduced mobility in the recommendations sub-
mitted to the Stockholm Conference on the Environment, claiming that the problems
of the handicapped were health problems. Similarly, in France, questions re-
lated to the handicapped, when mentioned in the general press, are broached by
journalists specialized in health problems. I think that this is a mistake
that prevents reintegration problems from being raised in terms of the general
structure of society and from being given their true dimension. Of course,
this problem is not related to the initial phase of rehabilitation, and due
tribute should be paid to the medical specialists who have been the pioneers
of rehabilitation on both sides of the Atlantic. But the concern of the doctor
responsible for a functional rehabilitation service must from the very start
be to adopt a global approach towards all problems whose solution conditions
the success of reintegration: this means taking into account psychological
problems, calling upon psychotherapists, and making an effort to associate
the handicapped person himself with his treatment, taking into account social
problems and calling upon the personnel of social services and making an
effort to associate the family of the handicapped with the rehabilitation pro-
cess. The re-education measures used by physiotherapists and the possible
search for technical means to substitute for the destroyed functions should
be pursued with the same concern to find a global solution finally accepted
and integrated into his life by the handicapped with the participation of his
family. The intervention of experts regarding assistive devices should take
into account the real needs of the handicapped and the means offered by modern
technology.
- 5 -
The institutionalization of the rehabilitation process should therefore
be based on the creation of a multidisciplinary team surrounding the handi-
capped, who should be considered not as an object of medical care but as an
individual with his own personality, his specific needs, and the links that
tie him to the social group to which he belongs. The setting-up of a so di-
versified and at the same time so well-knit a team is certainly only possible
in specialized and well-structured centers. In our opinion this excludes
the dispersal of such teams at the level of medical structures that are more
or less polyvalent and generally under-equipped. The existence of multi-
disciplinary teams implies also a marked improvement in the standard of train-
ing whether in the university or in the course of professional activity.
The importance of the personality of the handicapped and of his links
with his family environment should lead to an investigation on the usefulness
of ambulatory treatments that avoid prolonged hospitalization and enable the
family environment better to play its role, which is considered as essential
in rehabilitation.
A number of countries have already made considerable efforts in the
above-mentioned fields. But a great deal remains to be done regarding assis-
tive devices. Besides experimental research, prostheses and ortheses remain
disconcertingly primitive. At the time when your Committee is undertaking
a study of the means of enabling the handicapped to benefit from the results
of progress accomplished in research, it is necessary to carry out a critical
review of the situation in the field of assistive devices.
It is evident, first of all, that current practice takes very little
account of the needs of the handicapped as they are felt by the handicapped
himself. The first problem will therefore be to ascertain the needs of
the users, the way in which the assistive devices are actually used, the ele-
ments that determine in the mind of the user the adequation of the assistive
device to his needs as he sees them.
Secondly, regarding technology, it may be seen that most prostheses
and orthoses remain cumbersome. At the Cannes congress, Dr. Zotovic rightly
emphasized that for over a hundredyears prostheses and ortheses have practi-
cally not changed, that they are often out of harmony with fundamental physio-
logical and biomechanical needs, that they are inaesthetic, heavy, rigid, en-
cumbering, and cause wear and tear to the clothes of the users, against which
there is no protection. It should unfortunately be added that very often
- 6 -
prostheses and ortheses do not stand up to intensive and prolonged use,
a situation that is aggravated by the lack of efficient maintenance ser-
vices.
It is quite certain that the situation would be totally different if
the prosthetist or orthesist, integrated into the rehabilitation team,
could also depend on a technology whose progress followed that of science
and techniques. I do not believe that the present structures of the assist-
ive devices industry allow for this goal to be reached despite the unceasing
and useful efforts undertaken, in particular in your country, and I refer
here especially to the new techniques of evaluation that are being imple-
mented for the development of prosthetics and orthotics techniques.
It should also be emphasized that the gap between the assistive devices
and the needs of the users would not be overcome solely by more sophisticated
methods derived from the various technological discoveries. Highly perfected
devices may very well not be tolerated by those whom they are meant to help,
due to excessively complicated functioning or to a design failing to take
into account the mechanical aspect of the function for, in the final analysis,
the really important point is to ensure full acceptance of the device by the
handicapped and its integration into his physical make-up.
2) The second phase of the rehabilitation process is essentially social
and professional. For even if the expected results have been achieved in the
field of functional re-education and assistive devices, the handicapped still
has to succeed in his reintegration into society. At presentthe best means of
this reintegration remains professional reintegration. Unfortunately, however,
such reintegration will be hampered by technical obstacles and attitudes of
rejection.
We have already mentioned the technical obstacles, but it is important
to recall at this stage that technological progress may greatly contribute to
overcoming them. We all know that a sound economic approach in this field of
the adaptation of working posts and machines can lead to solutions to problems
that seem insoluble. The scientific analysis of working attitudes, of move-
ments, of forces to be put into action, and of the risks faced, may lead to
all necessary modifications.
- 7 -
The adaptation of facilities and internal arrangements such as that of
access is no more difficult in the place of work than in other parts of the
environment, provided that there is a real will to ensure the reintegration
that everyone claims to wish. For it is very easy to disguise the more or
less conscious refusal to accept the different person, namely the handicapped
person, by advancing arguments that may seem in perfectly good faith. One of
these arguments is security. It may be argued that a given activity could be
dangerous for the handicapped himself or for those around him. There is much
to be said against that. Another argument on which I would like to dwell
further is the economic aspect-the allegedly overhigh cost of rehabilitation.
A number of studies, in particular in the United States, have shown the fallacy
of this argument in many cases. But the importance of the financial and economic
problems involved must not be underestimated, and the cost of rehabilitation
should not constitute or even appear to constitute an unbearable burden for the
collectivity. An economic analysis is therefore indispensable in all cases,
an analysis based not an a mere cost analysis but on a cost/benefit analysis
in which all the consequences, for the individual and for the group, of the
action contemplated should be taken into account.
However, in spite of all technical successes, in spite of greater economic
rigour, nothing will really have been achieved if we do not manage to convince
society as a whole that the handicapped are human beings like other human beings
and that their interests are also those of their fellow citizens. It was quite
appropriate solemly to recall that the handicapped held rights, but it would
be even more important to make people understand that the handicapped simply
hold the same rights as all others-because they too are people like other
people. They need to find housing, to move about, to work, to earn a decent
income to keep themselves and their families. At that stage there would be
no need to adopt a Declaration of the Rights of Handicapped Persons, and this
is what I personally hope for. But to reach that point, we need to consider
how to provide information on the problems of the handicapped that would neither
give the impression that there was an unbridgeable gap between the handicapped
and the non-handicapped nor give the impression that the former were in a posi-
tion of inferiority that could only arouse pity.
I believe that the following conclusions may be drawn from this statement
for the establishment of research and action programs:
- 8 -
1) The handicap cannot be isolated from the person who suffers from it and
a major effort should be made to find a better approach to the psychological
implications of the handicap.
2) The handicapped person must be associated more actively with his re-
habilitation process and find in his immediate circle all the experts who con-
tribute to the process of rehabilitation. The technological effort should not
be considered as an end in itself, but be placed at the disposal of the handi-
capped to improve the quality of his life.
3) True international cooperation should be established. This implies, in
our opinion, after the adoption of a common technology, the elaboration of
appropriate evaluation criteria. In view of the differences existing in the
sociological, climatic, cultural, and religious factors, evaluation programs
should be first drawn up on the national level. Effective publicity concern-
ing the results of such evaluation programs would enable an analysis of the
real needs of the handicapped in the field of assistive devices to be made.
Such action should lead to the definition of international standards, the
rationalization of production, and consequently a reduction in production costs.
4) The handicapped must be considered, first and foremost, as the human
being he is, with or without his disability. Such an attitude, if it were
really adopted, would enable a new approach to be made to his problems, whose
apparently specific character often tends to overcloud the fact that they may
concern all others. Are there any amongst us, whether handicapped or not,
who would not gain from a better knowledge of the conditions in which a recog-
nized factor of inadaptation may or may not push an individual into inadapta-
tion? Are there any amongst us who would not prefer to live in a man-made
environment that would be more accessible and therefore less tiring or to
use more convenient means of transport? Such an approach, if pursued to its
conclusion, would certainly enable us to see more clearly how research on the
problems of the handicapped could be of benefit to mankind as a whole.
*
*
The WVF has done me the honor of entrusting me with responsibility for
a stimulation center, INTER-ACCENT, whose headquarters are in Paris at 16, rue
- 9 -
Hamelin, Paris 75116. It is hoped that this center will contribute, insofar
as its means allow, to the implementation of the programs as defined above.
It will place itself at the disposal of the Congress of the United States of
America and be ready to support it in the great undertaking that the Congress
intends to pursue with the prestigious assistance of American technology.
*
*
*
Mr. Chairman,
Ladies and Gentlemen,
Thank you for your attention. If there are any questions you would like
to put to me or any points on which you would like further clarification, I am
at your disposal.
PRESENTATION OF E. H. GOLEMBIESKI, DIRECTOR
NATIONAL VETERANS AFFAIRS AND REHABILITATION COMMISSION
THE AMERICAN LEGION
TO THE WORKSHOP "PANEL ON RESEARCH PROGRAMS TO AID THE
HANDICAPPED" OF THE COMMITTEE ON SCIENCE AND TECHNOLOGY,
UNITED STATES HOUSE OF REPRESENTATIVES
SEPTEMBER 23, 1976
In behalf of The American Legion, we express appreciation for
the opportunity to appear before this Panel to present to the Committee and
the Congress our thoughts on the future direction of Federal research related
to solution of the problems of the handicapped.
Quoting from the VA Bulletin of Prosthetics Research (BPR 10-24
Fall 1975) - If anything has been close to the spectacular in recent history,
it has been in the design of electronic systems. Electronic circuitry for
control units has reached a degree of miniaturization, reliability, and
economy that commands serious consideration by even the most conservative
prosthesis/orthosis designers. And it has only just begun.
A new
electronics technology has been emerging over the past few years that has
more potential than anything that has preceded it, and it may indeed, provide
the breakthrough that we have awaited for so long. Its basis lies in the tiny
microelectronic chips that contain thousands and even tens of thousands of
components. These inexpensive chips can be programmed to perform
extremely complicated functions of communication and command and control,
as most of us have witnessed in the hand calculators everywhere. With the
companion technology that is producing these tiny, effective, and reliable
- 2 -
environmental sensors, the tools that many of us in research and design
have dreamed of are, perhaps, here at last. Microprocessors constructed
from these tiny chips require very low amounts of energy and can be so
configured in volume and weight that they can be incorporated into a
prosthesis or orthosis in almost any nook or cranny of space available.
Their possible uses for technological extensions of faulted human functions
are rather mind-boggling, for these tiny electronic systems have large
memory capacities and can process information at rates of millions of
bits per second. Electronic jumpers for the neural gaps in injured spinal
cords may seem a bit far out as of now; we don't even know the detailed
neural requirements for what is to be replaced - and microsurgery has not
kept pace with microelectronics, But if large data handling capacity is
needed in small spaces with very little energy required, the technological
base is here and now.
As you know, the Rehabilitation Act of 1973 (Public Law 93-112),
as amended by the Rehabilitation Act of 1974 (Public Law 93-516), established
the Architectural and Transportation Barriers Compliance Board. One
of the major charges given the Board was to investigate and examine
alternative approaches to the barriers confronting handicapped individuals,
particularly with respect to residential and institutional housing. In considering
the housing needs of handicapped individuals, the Board was instructed to
determine what measures are being taken, especially by public and other
- 3 -
nonprofit agencies and groups having an interest in and capacity to deal
with such problems.
In context of the foregoing, The American Legion has consistently
supported the appropriation of sufficient funds for the conduct of the
Veterans Administration's medical research program and for a prosthetic
research program for the development and testing of prosthetic, orthopedic
and sensory aids to improve the care and rehabilitation of the disabled.
Also, The American Legion has endorsed the National Policy for
a Barrier - Free Environment as follows -
"In the United States today it is estimated that one out of ten
persons has limited mobility due to a temporary or a permanent physical
handicap. Improved medical techniques and an expanding population of
older persons is increasing this number every year. Yet the physical
environment of our nation's communities continues to be designed to
accommodate the able-bodied, thereby increasing the isolation and dependence
of disabled persons. To break this pattern requires an act of national
commitment.
"Therefore, it should be the policy of The American Legion to
recognize the inherent right of all citizens to the full development of their
economic, social and personal potential, regardless of their physical
disability, through the free use of the man-made environment.
"The adoption and implementation of this policy requires the
- 4 -
mobilization of the resources of the private and public sectors to integrate
handicapped people into the communities."
Your letter of instruction on the Research Programs to Aid the
Handicapped asked us to identify research and development projects and
to specifically address the questions associated with your letter. I regret
advising that we are neither staffed nor equipped nor do we have access to
the vast volume of reference and ongoing research and development to
address the questions posed. We do have several areas of concern to
The American Legion and we suggest them for your consideration . -
1) An increase in research and development in the area of lighter
materials, as well as in improvement of fitting techniques. In its annual
report for Fiscal Year 1975, the Veterans Administration lists for all
veterans an average age of 51. 2 for the service-connected group, and 67. 8
for the nonservice-connected For World War I veterans these ages, by
group, are 80.9 and 81. 4. The World War II veteran ages are 57. 1 and
61.2 respectively. It is evident that many amputees in these groups are
afflicted with problems of the aging - thus it would be less demanding of
their vitality if lighter materials were developed and fitting of new or
replacement prostheses improved.
2) Research and development in the area of detecting incipient
peripheral vascular disease. Early detection followed by medication and
therapy, would, we believe, avoid many amputations.
3) Research and development in medical and social management
of the elderly. We refer to that group who become debilitated from aging.
- 5 -
Methods of management of the elderly should be developed that would
encourage independence. An approach suggested is new concepts in
architecture, furnishings, self-help and communication devices for all
in extended care facilities and in the home. In this area, we refer your
attention to the Architectural and Transportation Barriers Compliance
Board report on housing needs of handicapped individuals.
4) More attention should be given to the problems of spinal
cord injured patients. This should include enhancing their mobility and
manipulative capability to permit employment and participation in
recreational activities.
5) As rehabilitation technology becomes more complex, there
is developing an increased need for rehabilitation engineers to be associated
directly with the professional medical services of the Veterans Administra-
tion, both on the wards of the hospitals and in the homes of patients. Early
attention should be given to establishing a training program for rehabilitation
engineers.
Thank you for the opportunity to present the views of The American
Legion in these areas.
Frederick C. Schreiber
National Assn. of the Deaf
Not included in my prepared statement are certain items which we believe
could provide substantial benefits to the hearing impaired community.
Foremost among them is in the area of mental health. The effects of deafness
place a severe strain upon people so afflicted but there are few people
trained to deal with the mental stresses created by hearing loss. Regular
mental health programs are of little value because of the communication barrier
which is a bar to treatment. Another problem is in the area of funding. What
is needed is federal funding that would cross state lines and provide
permanent facilities for mental health programs, not not as has been done in the
past, soft money which when phased out results in the programs being
discontinued because of the conflicting jurisdictional requirements that
seem to prevent bringing the patient and the program together. Federal
CIRCUMENT
'facilities would prevent this and insure that trained personnel would be
available to assist the people who need them. We need trained personnel,
but without facilities to provide treatment and to overcome the jurisdictional
problems, training alone will not accomplish much. I should note here that
the 13.4 million figure I have quoted for the hearing impaired is for the
non-institutionalized population. No one knows how many deaf people are
in our institutions, -hospitalized as retarded or mentally ill. We are
aware that a good number in such institutions do not even belong there.
But we do not know how many there are or even where they all are because of
the lack of a Federal program that could seek them out and provide treatment
if that is needed. But we definitely need a Federally supported program or
programs in mental health.
The figures used in this report come from the Deaf Population in the
United States, a Rehabilitation Service Administration supported project
2
undertaken by the National Association of the Deaf in 1971. These figures
represent the first attempt to describe the size and characteristica of the
deaf population in the United States since the Census Bureau gave up the
effort in 1930. For over 40 years we have had to depend on guesstimates
on numbers and characteristics. While we are better off today, there are
many questions still unanswered. What is the size of the institutionalized
population is only one of them. Employment trends is another. Training
opportunities and the effectiveness of training available is a third. We
ought to have a mechanism that would provide for annual surveys of these and
other questions related to deafness, and in this way, maintain a register
that could supplement the Census or assist the Census Bureau in developing
ways in which the deaf population could be accurately enumerated. It is
obvious, of course, that the number of people to be trained in special
education, rehabilitation, social services, etc. depends on the size of the
population to be served. If we don't know the size, we cannot plan with
any degree of accuracy what needs to be done.
While on this subject, I think that some thought should be given to
the rehabilitation process itself. At present time, the more gifted disabled
educational
person can get five or more years of training at the post-secondary, level.
The Congress, in its wisdom, has provided by law not only for this training,
but also for the specialized institutions as Gallaudet College, the National
Technical Institute for the Deaf, and others. The availability of these
educational opportunities has made the deaf American the envy of his peers
throughout the world. We are very proud of this. But we must note that we
do not provide as much for the less gifted deaf individual. It seems to us
we should extend the "equal opportunity" fiat to those whose needs are
3 -
accountile
greatest by extending the period of training for those that need it. In
the original Vocational Rehabilitation Act of 1973 that President Nixon
vatoed, there was a provision for centers for low-achieving deaf people.
The current law does not contain this provision. We have a few centers
today that receive some Federal support. These centers do a fantastic job,
but without provisions for long-term client training, their ability to meet
the needs of their clients is limited. Most deaf people can be rehabilitated
if the staff is there and they have time enough to do a proper job.
We also have specific legislative suggestions: One of them is to
establish within the RSA or even higher up in the Department of Health,
Education and Welfare, the Deafness and Communicative Disorders Office, by law.
This office should have the same status as the Office for the Blind in HEW.
Currently, this Deafness and Communicative Disorders Office exists
administratively and Commissioner Adams and his Executive Staff have been
very supportive of the Office. Because it is an administrative office, it
is subject to all the budgetary constraints of being but one small cog in
a very very large machine. The DCDO is the only office in the entire
Federal structure to deal exclusively with the hearing impaired. We have a
draft of what we have been calling a "Model Federal Plan" for this office.
It is only in draft form, but it spells out how the deaf community sees its
needs and how we think those needs might best be met. We know that what
we have so far is far from perfect, but we believe it is a starting point
that would bring services for the deaf at least to a level comparable to
that now available to the blind.
I wish to note that we think that the blind, too, have unmet needs.
ir them
That what is available now is not fully adequate either.
Earlier I mentioned the telecommunications devices, particularly the
ITY. One of the potential uses of these devices that I have not mentioned
JS the development of the equipment for use as terminals in the area of
computers. One of the more important applications would be in the area of
computer-assisted instruction at all educational levels. But especially
in the area of adult or continuing education. One of the greater deprivations
deaf people face is their unability to plug in to what is readily available
to people who have one commonality - the ability to hear. We have a very
good Continuing Education Program coming out of Gallaudet College. This
program does seek to provide assistance for Continuing Education on a
nation wide basis. It cannot, however, provide for the single deaf person
in a given community. Or for one or two people in Washington who wish to
on Thes hand,
take a course in journalism. Comuter-assisted programs, using the dual-
function TTY, could serve practically every one who wants to share in the
abundance that our country has to offer.
There are many more areas I would like to touch on. But in closing,
the one that seems of great significiance and which I believe all handicapped
people will agree with, is the need to establish consumer review panels
to assist the various governmental agencies so in determine mas which proposals
research
should have priority. Last night I read a clipping referring to a device
being called the "Tickler". According to the article, the device enables
a hearing impaired child to identify sounds, perhaps even understand some
words. It is worn around the waist so that one "hears" with one's stomach.
I am sure that being able to identify sounds helps even if it does not create
the ability to understand speech. But I also know that the Ear Institute
WILLIAM
in California under the direction of Dr. House has accomplished the same
@ 5 -
results with cochlea implants. I could not help but think that what the
Ear Institute is doing seems much more promising. I also wondered if we
would not have been further advanced if we had taken the money used to
develop the "Tickler" and used it instead to accelerate research in the
cochlea implants. In other words, we are concerned that our research
dollars are not being invested as wisely as they could be. The same NINDS
report I quoted regarding the dollar cost of deafness notes that research in
1965 for projects in hearing and hearing impairment included a total of 202
Federally funded projects but only 10 in NINDS were in the area of rehabilitation.
Of research in deafness and the management of deafness there were a grand
total of 32 programs of which NIH, including NINDS, funded only 7. What
I am trying to say is that all of us who are handicapped - not just the
deaf, but the other disabilities as well - feel that consumer review of
research and even training proposals would provide the kind of input that
would direct funding into areas that would be most productive and meaningful
to the people whose condition the proposal is intended to help.
A CONCEPT DRAFT
MODEL FEDERAL PLAN
FOR THE
OFFICE OF DEAFNESS AND COMMUNICATIVE DISORDERS
I. Structure and Basic Responsibilities of the RSA Office of Deafness and
Communicative Disorders.
A. Organizational Position within RSA.
Directly responsible to the Commissioner
1. Justification:
(a) Broad role needed in RSA and in other Federal Bureaus.
(b) ODCD cuts across all areas of RSA preventing categorization
in only one RSA division.
(c) Effectiveness of ODCD dependent on being able to clear and
consult on all RSA deafness, speech and hearing programs.
(d) Effective relationships with regional offices dependent on
access to complete information and on direct support of the
Commissioner's Office.
B. Clearance and Consultative Roles
1. New and continuation applications for training grants involving
primarily, or substantiably, the areas of deafness speech and
hearing must receive input from ODCD before decisions are made
by others. Similarly ODCD should have an on-going consultative
function along with the training grant project officers.
2. New and continuation applications for research or demonstration
grants must receive input by ODCD before decisions are made by
other officers. ODCD should maintain consultative relationship
with R&D project officers on all deafness, speech and hearing
grants.
3. ODCD should have consultative responsibilities in RSA Office of
Blindness and Visually Impaired on all programs in that Office
involving Deaf-Blind programs.
C. Through RSA Commissioner, relates to other programs in Office of Human
Development.
1. Justification:
Assistant Secretary for Human Development supports this concept
over the alternative of establishing separate ODCDs in other
OHD programs.
2 -
2. Involvement in other OHD programs will strengthen the potential
and the delivery of services to deaf citizens.
3. Input and coordination on deafness, speech and hearing is needed
by the Office for Handicapped Individuals, the 1976 White House
Conference Committee, Developmental Disabilities, the Head Start
Program of the Office of Child Development and the Administration
on Aging.
D. By being directly responsible to the RSA Commissioner, relationships
with other Federal Programs are enhanced. Joint planning, coordination,
stimulation and assistance on deafness, speech and hearing is needed in:
1. Office of Civil Rights
2. Civil Service Commission Programs for the Handicapped
3. Department of Labor Affirmative Action Programs
4. President's Committee on Employment of the Handicapped
5. Office of Education, Bureau of Education for the Handicapped
6. NIH and NIMH
7. St. Elizabeth's Hospital Mental Health Program on Deafness
E. Maximum utilization of the RSA Advisory Committee on Deafness.
Through the direct participation of the ODCD and its proximity to the
Commissioner's Office better utilization of the Advisory Committee will
occur.
F. ODCD needs to maintain formal liaison relationships with Deafness Hearing
and Speech organizations. Rehabilitation services for deaf, hard-of-
hearing and speech impaired clients are directly affected by the
following organizations:
1. PRWAD
2. NAD
3. ASHA
4. NAHSA
5. RID
6. CSAVR Committee on Deafness
7. CEASD
8. CAID
9. NRA Deafness Committee
10. IAPD
11. AGB
G. Deafness Hearing and Speech Workshops.
0DCD will in the area of short-term training:
1. Assess Needs
2. Establish Priorities
3. Seek RSA Funding Commitments
4. Plan
5. Conduct
6. Evaluate
7. Review Drafts of Proceedings
8. Arrange for publication
H. ODCD will conduct Public Relations Work in Deafness, Speech and
Hearing Areas within HEW, other Federal Departments, in the private
sector, and in the international community.
II. RSA Deafness, Speech and Hearing Programs.
ODCD will directly relate to and consult with all programs in its areas of
responsibility.
A. V.R. Training Programs
1. R.T. 17 NYU
2. U. of Arizona
3. U. of Tennessee
4. Northern Illinois University
5. Oregon College of Education
6. Gallaudet College
B. Special Programs in Deafness, Hearing and Speech
1. CSUN Leadership Training Program in the Area of the Deaf
2. CSUN Leadership Training Program on Deaf/Blindness
3. NAD Communicative Skills Program
4. National Interpreter Training Consortium
5. Western Maryland College Social Work Training Program
C. V.R. Supported Audiology and Speech Pathology Training Programs.
D. Post-Secondary Education Liaisons
1. NTID
2. Gallaudet College
3. St. Paul Technical Vocational Institute
4. Seattle Community College
5. Delgado Jr. College
6. California State University at Northridge
7. 30 other Jr. College Programs funded through Vocational Education
Funds earmarked for the handicapped
E. Evaluation and Personal Adjustment Training Centers
1. Crossroads Rehabilitation Center
2. Goodwill Industries
3. Opportunity School (Columbia, S.C.)
4. Cave Spring, Georgia Rehabilitation Center
5. Others
III. ODCD - Regional Office Relationships
A. The ODCD shall maintain direct working relationship with one full
time ODCD designated position in each regional office.
1. Specific responsibilities of ODCD regional officer
a. Extend Central Office's programs on deafness, speech and hearing
to the States
b. Serve as consultant to other RSA regional office professionals
c. Assist Central ODCD in developing and maintaining relevance
to the field
d. Providing closer monitoring of federally funded RSA programs
in deafness, speech and hearing
e. Working with State V.R. agency administrators to maintain
adequate focus on deafness, hearing and speech programs needs.
B. ODCD Regional Officer - State Coordinator of the Deaf Liaison Relationship
1. Deafness Orientation and in-service training programs for State
Coordinators and RCDs
2. Informational and clearing house services on deafness, hearing and
speech
3. Receiving State V.R. Program input on deafness, speech and hearing
utilization problems with federally authorized programs
4. Receiving State inputs for federal law expansion and modification
and in the development of regulations for implementation of programs
5 P
C. Maintain liaison with other regional HEW-Labor Programs in deafness,
or useful to programs serving deaf people.
D. Develop and maintain contact with consumer groups.
1. Hard-of-hearing adult groups affiliated with Hearing and Speech
Centers
2. State Association of the Deaf Offices in Region
3. Lost Chords Clubs
IV. Staff Needs
A. Director - GS-15
1. Adm. Assistant - GS-11
2. Clerk-Typist - GS-4
3. Professional Interpreter - GS-9
4. Program Development Specialist - GS-12
(For Liaison with other Federal programs)
B. Hearing, Speech and Language Assistant Director - GS-14
1. Secretary - GS-6
C. Deafness Training Program Assistant Director - GS-14
1. Secretary - GS-6
D. *Materials Development Specialist - GS-10
E. *Deafness, Hearing and Speech Information Officer - GS-10
1. Clerk-Typist - GS-4
F. Full-Time Regional Consultant in each Region
*1/2 time with B and 1/2 time with C.
Advisory Committee
RSA Commissioner
on Deafness
-
Office of Deafness and Communicative Disorders
Director - - GS-15
Administrative Assistant - GS-11
Interpreter-Typist - GS-9
Clerk-Typist - GS-4
Information Officer - GS-10
Hard-of-Hearing
Deaf and Severely
Regional RSA
Speech and Language
Hearing Impaired
Offices
Impaired Branch
Branch
Assistant Director - GS-14
Assistant Director - GS-15-
Full-Time Deafness
Clerk-Typist - GS-6
Clerk-Typist - GS-6
Offices in each
*Program Development
*Program Development
Regional Office
Specialist - GS-12 (1/2 time)
Specialist - GS-12 (1/2 time)
Materials Development
Materials Development
Specialist - GS-10 (1/2 time)
Specialist - GS-10 (1/2 time)
*Liaison with other Federal Programs.
THIIIII
THE
NATIONAL
DIRLISMI
NIRA
THE NATIONAL INSTITUTE FOR REHABILITATION ENGINEERING
POMPTON LAKES, NEW JERSEY 07442
Telephone 201 / 838-2500
Testimony By: Dr. Donald Selwyn
***
Donald SELWYN, E.E., PH.D.
EXECUTIVE/TECHNICAL DIRECTOR
Date:
Thursday - Sept. 23, 1976
A.D. Zampella, M.D.
MEDICAL DIRECTOR
Place:
THE HOUSE COMMITTEE ON
BERTHOLD E. Schwarz, M.D.
ASS'T MEDICAL DIRECTOR
SCIENCE & TECHNOLOGY
LAWRENCE DUNKEL, PH.D.
Rep. Olin E. Teague, Chmn.
DIRECTOR PSYChOLOGICAL, COUNSELING,
TESTING AND placement SERVICES
HARRY Panjwani, M.D.
Rm 2318 Rayburn Building
DIRECTOR - PSYCHIATRIC SERVICES
Washington, D.C.
ROBERT FONDILLER, PH.D., P.E.
DIRECTOR - HUMAN ENGINEERING
Topic:
RESEARCH PROGRAMS TO AID THE
specialists AND CONSULTANTS IN
MANY DISCIPLINES NAMES AVAILABLE
HANDICAPPED - REHABILITATION
ON WRITTEN REQUEST TO N.I.R.E.
ENGINEERING PROGRAMS
HONORABLE CHAIRMAN
COMMITTEE MEMBERS
PARTICIPANTS
...
and OBSERVERS 8
I am grateful for the privilege of being here today, and will
endeavor to make availabe to you pertinent data and recommendations
which have developed from tens years of continuous and full-time
clinical research in the field of APPLIED REHABILITATION ENGINEERING.
When THE NATIONAL INSTITUTE FOR REHABILITATION ENGINEERING
(hereinafter: NIRE) was founded about ten years ago, it was
established for the specific purpose of: "USING TODAY'S TECHNOLOGY
TO HELP TODAY'S SEVERELY AND MULTIPLY HANDICAPPED".
The NIRE, not a government agency, but a tax-exempt voluntary
(IRS 501(c)3) organization, was founded by interested physicians,
engineers and others for the express purpose of using devices and
training to restore personal, financial and vocational independence
to severely and multiply handicapped people who could NOT be relieved
of their handicaps medically, surgically or with therapy.
The Institute was to be - and is - a "place of last resort".
A secondary facility for those handicapped still unable to perform
tasks they want or need to perform, after completing every possible
type of treatment, surgery or therapy.
When NIRE opened its doors about ten years ago, its staff and
myself were the only people to use the term: " REHABILITATION
ENGINEERING" Others doing engineering-type work with or for
the handicapped called themselves "Bio-Medical Engineers". Of
course they mostly worked in and with hospitals and were concerned
with devices implanted, or used as lab instruments, etc. - which
really was and still is: "Bio-Medical Engineering". In those
early years, we - at the NIRE- were the only ones using engineering
NOT for medical rehabilitation, but for non-hospitalized handicapped
(cont'd. on back)
YOUR TAX DEDUCTIBLE CONTRIBUTIONS HELP CHILDREN AND ADULTS WITH ARTHRITIS BIRTH DEFECTS BLINDNESS BRAIN DAMAGE CEREBRAL PALSY
CORD INJURIES CYSTIC FIBROSIS HEARING IMPAIRMENTS MULTIPLE HANDICAPS MULTIPLE SCLEROSIS MUSCULAR DYSTROPHY.. PARKINSON'S DISEASE
POLIO RESPIRATORY DISORDERS SPEECH IMPEDIMENT STROKE VISUAL IMPAIRMENTS.
- BIO-ENGINEERING RESEARCH LABORA TORIES AT AFFILIA TED HOSPITALS -
- 2 -
who needed SOCIAL AND VOCATIONAL REHABILITATION. To clearly indicate
this difference, we adopted and have since used the term: "REHABILITATION
ENGINEERING". However, others began using this term until, about
6 years ago, it was chosen and used for a government-funded program
to establish "Rehabilitation Engineering Centers" throughout the U.S.
It is said that imitation is flattery. While our name and
nomenclature was imitated, our work was not: The new centers were:
each assigned a "core area" to specialize in, in association with
universities and, mostly, with university-affiliated hospitals.
These centers were not at all similar to this Institute in form,
purpose, goals, organization, or technical capabilities.
This Institute, always inadequately funded, did discuss with
HEW officials the possibility of obtaining designation as, and funding
for being one of the rehabilitation engineering centers Howver, our
operation did NOT at all fit in with the government program so that,
if thi S was to be accomplished, we would have had to affiliate
with teaching hospitals, medical and engineering colleges - and we
would need to adopt and pursue a specified "core area" of work.
Our Board of Trustees carefully considered these proposals, and
finally turned them down because, were we to meet these requirements,
we would become unable to provide an individual and comprehensive
service to a severely or multiply handicapped person. We would be
limited to only those capabilities within our "core area". And,
we were (and still are) the only organization in the U.S. which
can and regularly does provide a total goal-oriented service to
severely handicapped individuals. And, the gov't officials were
adamant in their stand that they could NOT fund or support this
Institute, or any other organization for the type of program we
then and still do operate
As a consequence of these occurrences and policies, the
gov't funded REHABILITATION ENGINEERING CENTERS are well funded,
with full-time staff members (small to moderate size staffing - not
massive) and affiliated with or located in a teaching hospital
setting
In contrast, this Institute is funded, not by the government
but by donations from the public and by fees charged clients (on a
sliding scale related to means). The NIRE has, as fact but not thru
choice or design, an annual budget of about $ 100,000.
The NIRE has been about this size, as to income, for all of
its existence. There is a smallfull-time staff (never more than 5)
and a very large regular, professionally qualified (unpaid-volunteer)
part-time staff. The Institute does clinical research only. That isvuco
it does no research not for a particular client (individual), butb dtiw
it does any and all research necessary to help that person become [s9]
functional no matter how much time , effort and moneywitansev
may require. Between 250 and 350 individual clients have been
served each year since 1968 in this way.
The obvious result of this kind of operation is twofold:
1. The client at hand is almost invariably helped. HIS LIFE IS
CHANGED. He, having been unsuccessfully helped at other
facilities before coming to the NIRE, is helped and happy.
- 3 -
2. The Solution(s) to that client's problem(s) become permanent
knowledge to NIRE's staff. Also, records are permanently in
the files, available for access the next time we encounter
similar problems with another client.
A. If a FREQUENTLY ENCOUNTERED DISABILITY, personnel from other
facilities should know about NIRE's solutions, and be able
themselves, to learn the techniques.
NIRE's board will not allow its developments, which require
not only hardware, but also professional diagnostic, fitting
and training services, to be sold and distributed commercially.
Therefore, the only way such services can become available
on a local basis, nationally, is for personnel from non-
profit and governmental organizations to attend classes
or to intern at NIRE, to learn the techniques. Presumably,
salaried personnel who lack the (sales) profit motive, and
who have the training, will be conservative, honest and
effective in applying devices and training to their patients
or clients.
BUT, FUNDS ARE NOT AVAILABLE for them to take time off, to
travel to NIRE, or to pay NIRE tuition for its costs in giving
the training, and in partially amortizing the research it had
done.
An Example is: The NIRE electronic speech clarier which
not only amplifies, but which clarifies
speech of people with cerebral palsy,
Parkinson's Disease, vocal cord paralysis
or injury, Huntington's diease, MS, ALS,
stroke, and other disorders resulting in
dysarthria. (slurred speech)
Perfected and made practical in 1972,
the device has bean and still is frequently
dispensed at NIRE. But no practitioners
from non-profit or gov't hospitals have
arranged to obtain the specialized technical
training needed for this work. (Each unit
must be built specially, programmed for the
particular user's voice characteristics).
Hearing aid companies, and dealers, want
very much to sell these devices
but
NIRE's board does NOT want them abusing the
public with these devices (unnecessary sales,
excessively high prices, etc) as with hearing
aids. So, for the past 4 years, and in the
future, patients MUST come to NIRE in New Jersey.
Perhaps - possibly with some partial gov't support, professional
personnel from non-profit agencies might learn the technology.
It cannot be learned from reports or books, and clinical
experience with different types of handicaps, with the devices,
is an absolute necessity.
- 4 -
B. If An UNUSUAL DISABILITY is encountered, the NIRE will
do research to nelp the one patient. The patient or client
will be charged, on a sliding scale basis for clinical service
time, and for materials, but NOT FOR THE RESEARCH.
A solution, or multiple solutions, are found for that
person's problem (s)
and the data is forever in NIRE's
files.
Because of the infrequent occurrence of this disability,
it would be wasteful of time and money for the staff members
of other facilities to be taught the procedures.
It would be sufficient for the service or technique to be
REPORTED so that rehabilitation workers who might encounter
a similarly disabled person at a later date would know they
could refer the person to NIRE.
Unfortunately, there are so many different publications,
and most institutional libraries are understaffed with
unreliable indexing and cross-indexing, that MOST OF THE
TIME, professionals do NOT know, 2 years later, where to
send a patient with a problem of this sort.
THERE IS A SOLUTION
and we recommend government
implementation, as follows:
Establish, in a central location (midwest) a
NATIONAL REHABILITATION REFERRAL COMPUTER SERVICE
that can be accessed by telephone terminal, by mail,
by telegram, or by mailgram.
Encourage every rehabilitation facility to send in data
detailing a problem estimating its relative frequency of
occurrence - and the solution(s developed, giving the
description of the patient's condition and abilities
both BEFORE and AFTER the process or program.
Staff at the computer would PROGRAM this in, with "key"
words to get access, and with all types of cross-indexing, by
name of disease, name of symptom syndrome, descriptive
list of symptoms and/or disabilities
...
names of researchers,
etc.
Output to a query would be a list, withonly brief summary data,
of facilities which have dealt with, or which claim to be able
to deal with that problem orproblem complex.
On this basis, there would always be complete andup-to-date
information about places suitable or possibly suitable for
referral.
- 5 -
HOW CAN REHABILITATION ENGINEERING HELP THE HANDICAPPED?
Very few people have a clear conception of what rehabilitation
engineering is, and how it can help then handicapped. This is because
work with hardware must be governed by the same economic and natural
laws, regardless of whether it is for commercial purposes or for the
handicapped.
For unavoidable technical reasons, there are and always will be
three or four categories, as follows:
1. CLINICAL WORK THAT MUST. BE DONE IN A HOSPITAL:
a. Instruments and lab equipment (Bio-Medical Engineering)
b. IMPLANTED ORGAN SUBSTITUTES OR AIDS
such as artery substitute tubing, drain tubing for
hydrocephalic children, etc
PASSIVE IMPLANTS.
cardiac and phrenic (breathing), and bladder
pacemakers or stimulators active electronic devices
for involuntary function stimulation often automatic.
hard implants required to take mechanical stress, either
passive or semi-passive/active
such as bone sunstitute
material, and artificial bone joints.
artifical tendons and their sheaths, which are
active, moving parts with very tight mechanical tolerances.
.....
electronic sensing, control and stimulating devices
for myoelectric control of limbs and braces, or for stimulat-
ion under conscious voluntary control of paralyzed limbs
which are isolated from the brain by a damaged nerve or
spinal cord
these are called neural bypasses.
mechanical heart valve substitutes
....
and
powered heart-substitute pumps.
implanted plastic lenses, inserted inside the eye to
replace the lens removed when a cataract is taken out.
and many more. All require surgery, and must be used in a
hospital.
C. Typically, researchers at the hosptal develop BOTH the
devices and the methods for using them. If the methods prove
successful, then more of the devices are needed; if they are
all the same, they are NOT made at that facility: Private
businesses make and sell the device. The h ospital researchers
either go on seeking improved designs, or go to other projects.
IF the devices cannot be mass-produced, and if every one
must be custom made, then the researchers try to find a way
to provide written specifications so they can be custom
ordered from a manufacturer. But if this is impractical
- 6 -
then the personnel at the non-profit facility may have to
custom-make every item themselves. This can occur for any of
3 or more reasons:
(1) The demand is too low to justify investment by a manufacturer.
(2) Every device is so different, tooling cannot be used and they
must be made by hand.
(3) The device must be fabircated in the presence of the end-user
and trials and fittings are necessary during the manufacturing
process.
Reason (3) is common in the fields of artificial limbs, braces,
low vision glasses, corsets and orthopedic shoes.
It is my belief, based on many years' experience, that any
product that is made, distributed or sold commercially should
either have limited profit, or - - if it does not then payments
(royalties) should be made to the government, to recompense the
government for thecost of development, if the original research
was funded by the government.
This would prevent the gov't from having financed and licensed
firms to exploit the handicapped, and to exploit programssuch
as Medicaid and Medicare.
But. I believe in the free-enterprise system, and feel that
a dual system is best one which funds R & D in some areas,
and which allows royalty-free commercialization with excess
profits limitations; which permits royalty free use by non-profit
organizations; and which encourages firms which do not want the
excess-profits limitations to fundtheir own R & D without
gov't subsidy.
2 COMMERCIAL ENGINEERING, PRODUCTION AND DISTRIBUTION:
This is feasible where:
a. There is enough demand for the service and/or product
to justify business investment.
b. Where the product is the same for everyone, and mass-producible.
C. Where there is no need for professional services, for safe
or effective ritting, if sold retail to the user. Or, where
professional fitting is necssary, then sales to the consumer
directly, must be avoided or forbidden. Sales should be
only for delivery to clinics, hospitals, etc.... where
proper professional service can be given.
d. All devices intenaddfor the handicapped, but not for non-
handicapped, should be required byfederal law to make:
FULL DISCLOSURE about dangers, contra-indications,
etc. - just as is presently required on data about
drugs, for doctors and patients.
- 7 -
Even the new MEDICAL DEVICES law is inadequate to
the extent that it applies ONLY to "Medical Devices"
which does NOT include many of the devices advertised
in handicapped consumer magazines, for direct sale by
mail, such as PARAPLEGIA NEWS, etc.
I am passing around a few issues of this and other
such publications
so the Committee Members can
look at the illustrated ads, and at the classifieds.
Perhaps 2 of the most dangerous devices are the
"wheelchair vans" advertised for "self-loading entry
and exit"
...
and sold with controls so a buyer can
drive it from his wheelchair.
AT NIRE we evaluate and train, and get licensed, with
medical approval, any person wanting such a van BEFORE
he 1S allowed to order tne van. We deal ONLY in person
with no sales by mail.
We have encountere many, many people who have ordered such
vans, paying $ 11,000 to $ 16,000. for the equipped van,
only to find tney cannot get in because of too low a roof
for their height; or they cannot drive it at all due to
insufficent reach or strength; or
----
WORSE YET
they can drive it but NOT with adequate control for safety.
Chairs advertised for direct sale to people who need a
rising seat to get up from a sitting position are another
serious problem. The ads do NOT state that users MUST be
able to lock their knees, that they must have adequate
sense of balance
and must have enough movement and
strength in the legs not only to stand, but to shift the
balance to avoid failing during certain phases of the
transition. Many people have been hurt some very
seriously, this way.
Only an occupational therapist, renabilitation engineer, or
trainea and experienceu professional can adjust the equipment,
add friction material to the seat of the chair, or to the
heels of the shoes, or to both, or brace the patient, and
train the patient to use such a aevice safely.
Federal law shoula require that such devices either be
tried first, before being ordered, in the presence of
qualified professionals familiar with the device; or
if ordered by mail by the handicapped person, delivery
should be made ONLY to the clinic to be sure the patient
can use it safely as is, or adapted, and with training.
e. Magazines for Handicapped Consumers, whether for profit or
non-profit, often Decome dependent upon paid agvertisements.
Even if owned, or published by handıcapped people, the economic
need for the publication to survive and for the staff to receive
their salaries are so great that the publishers often develop
the habit of soliciting and accepting every paid ad they can get.
- 8 -
Many, 11 not most, of these ads make silly claims that are
misleading and untrue. How many handicapped buy: "Freedom Vans"
to gain their "freedom" from severe paralysis?
Because the publishers of these handicapped consumer magazine
often do not use any restraint, it is necessary to have legislation
specfically forbidding emotion-evoking terms such as "Freedom Van"
and specifically requiring :
1. Listed contra-indications
2. Recommendations for a personal evaluaion,
or else offering a money-back return option
3. Disciosure of operating or maintenance costs.
4. Lists of disabilities for which NOT suited, useful
or safe.
5. Accurate descriptive listing of features and
specifications so that a reader can compare,
accurately, the construction, operating and
technical differences from one brand to another
of similar products.
No publisher of a handicapped consumer mazgine wants to be the first,
or the only one to limit or restrict advertsing, or to set and
enforce standards To be first means loss of advertising. So, they
all use anything. If the law imposed the same standards on every
such publisher, then they would NOT be afraid to enforce the
standards, and none would lose by doing so. The handicapped would
benefit.
I urge that a law be drafted, on a national basis, which would
require that a publisher wno carries ads selling special products
to the handıcapped, do either of the following:
A. Accept ONLY institutional ads, mentioning a product
and soliciting the reader to write for information, but
including no claims for the product.
or
B. Making full disclosures in the ad, as mentioned above.
Postal or other regulations should require that materials sent
thru the mail to a handicapped person meet similar standards of
avoiding emotion-evoking names, false or exaggerated claims, etc.
and of giving complete, factual specífications which can be
compared with those of other similar products.
f. LICENSING IS NOT ANSWER
hearing aid licensing laws in
the various states have NOT helped the consumer at all. They
nelp dealers by limiting the profession to make for Iewer
competing dealers.
Testing one's competence, as licensing does Ior nearing
aid dealers, does not ever guarantee honesty, slow careful
work, concern for the patient. We very rarely learn of a
licensed person having had his license taken away because of
exploitive sales practices, dishonesty, poor service, over-
charging, etc.
- 9 -
The only effective way to prevent exploitation of
handicapped people is to provide RECOURSE AFTER THE ACT.
We recommend legislation which would be national, and which would
provide thefollowing two remedies:
(1) AT NO COST TO THE HANDICAPPED PERSON, a county or state
CONSUMER AFFAIRS OFFICE would have the power to go into
any court having jurisdition, to file a civil suit,
seeking any or all of these results:
a. Restraining Order barring further sales
pending outcome, where there is flagrant fraud,
or people are endangered.
b. Sue for return of patients money, or Medicaid's
money (or any third-party's), plus costs and
compensatory damages.
C. Sue for return of money paid, plus both
compensatory AND punitive damages.
d. A jury trial would be given if asked by the
defendant. There would be no news releases before
the trial was over - the defendant would be presumed
innocent unless and until found guilty, with all
rules of evidence applying.
e. In cases of outright fraud, the Consumer Affairs
Office would have the power to refer to the prosecutor
for criminal prosecution
either before (without )
or after a civil action.
I. If exonerated, the vendor, etc. would NOT have been
hurt by bad publicity
and his costs for his
defense would have to be paid by a fund set for
this purpose. ALL COSTS, including his lawyer's
fees
not the summons and filing fee costs
which courts normally allow.
(2) AT THE CONSUMER'S EXPENSE, initially, if he chose, he could
himself file a civil suit against the xadax vendorwhich, if
successful, would bring him refunds, compensatory and punitive
damages. If not successful, he would have to pay the defendant's
costs - all costs, not token costs. Publicity would be forbidden
before a guilty verdict, and after the verdict, if NOT guilty.
3. NON-HOSPITAL, COMPREHENSIVE REHABILITATION ENGINEERING FACILITY
(this refers to the N I.R.E. in Pompton Lakes, N.J. - or similar org.)
There are gaps in REHABILITATION ENGINEERING which cannot be filled
either by the "centers" that are supported by the government, nor by
other gov't or private non-profit medical-type facilities, nor by
commercial manufacturers or sales firms
These gaps have been successfully filled for the past 10 years
by the National Institute for Rehabilitation Engineering. There is
need for expansion 0 f these services, in terms of patient load per
year, and in terms of providing services in distant areas withut the
patients or clients having to go to New Jersey.
- 10 -
a. A patient is permanently handicapped and unable to
perform certain specified functions unaided, which he
must be able to perform, to work - or to care for himself;
or which he wants to be able to perform, for his own
pleasure or satisfaction
or for that of his family.
The patient is NOT in great pain, and has a long life
expectancy.
Economically, he can be independent if helped - and, if not,
he will be supported by the taxpayers, at home, on welfare,
or in an institution, on welfare.
How can he be helped?
The first step is a human-factors enginnering (performance
ability) evaluation by persons trained and experienced in this
who have special additional training, to perform SCREENING TESTS
related to speech, hearing, vision, memory, ability to read,
ability to remember and recall, and ability to use symbols
(letters, words, numbers, etc).
The "evaluator" must have training in and knowledge of
BOTH the physical job-performance requirements of various
jobs and occupations
and also the mental skills, training
and levels of judgement required.
The "evaluation" must be done at NIRE, with visits to
the client's residence and his school or place of employment.
The evaluation takes a team of perhaps 3 staff members,
2 to 4 days. A lot of notes are taken, as are photos, and
sometimes movies. A report is written on the findings,
conclusions and recommendations.
Next, the client is fitted with some equipment on loan,
and is trained to use it. Usually, the devices are not standard
commercially available products
and usually they are specially
designed so that not one, but many are selectively useable,
without interfering with one another.
For a total quadriplegic, the equipment which gives real
independence typically breaks down this way:
30% commercially bought items, used as bought.
50% Specially Modified or Adapted commercial products.
(not merely those made for sale to the handicapped
but often regular products made for the public, but
specially adapted by NIRE)
20% Specially made items, made completely to special order
for the one client, by NIRE. Reason: something not otherwise
available or cnvertible from any purchased item.
Or because much better results, or much lower cost can
be obtained by making it.
- 11 -
This type of breakdown usually yields the maximal
results for the client, at the most reasonable cost.
Mass-produced items (30%) are lowest in cost, and easiest
to maintain and service. Adapted commercial products (50%) a re
slightly more costly, but less costly than custom made items.
Parts and service are also more readily available
And the custom-made items give PERFORMANCE when it
can not otherwise be obtained which is the purpose of the
entire program!
b. What is the NIRE? It fails between the commercial firm, and
a hospital - and fills these gaps.
The NIRE staff know industrial processes and operate
very efficiently in making one-of-a-kind items. You can
compare NIRE, so far as this capability is concerned,
to a
" engineering Job shop" in industry
and
" a manufacturing job shop" in industry.
This means, quick reaction capability at low cost, in the design
and construction of a new type of aid for a client.
The Dept of Defense is well acquainted with Jobs Shops - one
in New Jersey being " Bogue Electric Mfg. Co,".
NIRE IS non-proiit so, with the equipment, skills and
abilities of the job shop, and with the desire to serve and
help handicapped people, a great deal is accomplished on an
individual basis, for individual clients. And at low cost.
C. Staffing at NIRE is most unusual in several ways:
(1) Physicians and other expensive staff members are all
regular part-time; never full-time. MOST WORK WITHOUT PAY
for research and training purposes, with fees for seeing
patients or clients.
(2) Clinical work on a day to day basis, is done by full-time
paid technical personnel who work under the supervision
and direction of the licensed, qualified professionals
who are part-time. Thus, quality work is achieved at low
cost andwith a low payroll.
(3) Off-The-Premises hardware and software development is
done by unpaid, professionally qualified volunteers, mostly,
and by some paid, part-time workers. They do notasee
clients but work from data given them, initially and
as later feedback, after tests. Many work at home; and some
at their places of employment.
Many are not near NIRE, geographically
and NIRE uses
high-powered amateur radio to keep in touch with some,
also mail, teletype, facsimile and slow-scan television.
These media are also used over the telephone.
- 12--
(4) Off-the-premises volunteer "experts" also train NIRE
personnel in testing, screening and hardware utilization
techniques. Much of this is done by mail, telephone and
radio, using teletype, facsimile, television, etc.
(5) NIRE has affiliates in Englana, Sweden, Italy, Holland and
in other western countries, who share common interests and
assist with research and training of NIRE staff.
(6) Some of these consultants are employed in rehabilitation
and cannot permit us to make it known they work for or help
NIRE because of possible employment problems which might result.
(7) NIRE is far better able to serve the handicapped having
more than 350 consultants available in every field, and
relying on a diversified part-time staff than would be the case
if, as most other facilities have, NIRE was to depend on a.
small number of regular, paid, full-time emloyees.
(8) The key to NIRE's success has been the coordinator of all
the dispersed and local staff - for each client's needs.
There can be only ONE coordinator, or PROJECT ENGINEER per
client, and he must analyze, recognize and schedule people to
act ON ALL the client's needs. This often entails CONFERENCE
meetings and conference calls involving various staff members,
some of whom have never seen each other.
d. Funding at NIRE usually presents cash flow problems with
slow payments to suppliers, and a payroll limited to 3 to 5
full-time people.
Necessity is the mother of invention, and this 10 year hardship
is in great measure, responsible for both the success and the
world-wide reputation of the NIRE for getting results when no
other organization has been able to do so.
Annual GROSS INCOME has been as high as $ 120,000. in 1971
and as low as $ 60,000. in 1975. Despite this, the NIRE has
a fully owned 5-acre site, with a brand-new 12,000 sq. ft.
building on it - - erected over a 5 year period without a
general contractor, of masonry, by volunteers (many housewives)
and some local subcontractors for certain specialized or
dangerous tasks.
IF NIRE WERE TO RECEIVE MUCH MONEY IN THE NEAR FUTURE,
very little would mingan change the first year. Internship
programs, with stipends, would be set up. Seminars would be
held
professional training would be given top
priority
but it would take several years for an orderly
expansion to take place.
Satellite operations, for evaluations, fitting and training,
would be set up, equipped and supported
but they would
NOT duplicate (or even try to do so) NIRE's research work
or manufacturing work.
The NIRE would become a custom-equipment/technique center
receiving, analyzing and sending out data, and doing its own
- 13 --
research.
Attitudes of NIRE Staff Personnel have been and are most
important. We have found among paid employees three different
attitudes:
(1) The work is just another Job. "I want the most money
for the least amount of work
and
have
no
loyalty
to the employer or the handicapped".
(2) In other instances, a worse attitude is evidenced by
theft of research data, and attempts to sell it, or to
set up a private business making and selling similar
devices commercially. A former Chief Engineer at NIRE
was found guilty in the N.J. Superior Court of having
stolen design data and then unlawfully set up his own
business to make and market, by mail, extremely dangerous
breath-control units enabling quadriplegics to drive electric
wheelchairs. (And handicapped magazines know ingly, in
several cases, accepted and ran his ads to sell the
illegally made, and court-restrained equipment to readers.
(3) The best attitude is that staff are givers, not takers.
That each staff member will give of his time, his money
and his knowledge, to help any handicapped person who is
cooperative and will try to help himself.
Almost all of NIRE's part-time people, who work unpaid as
volunteers, fall into the desireable category (3).
Of paid staff, NIRE has had 2 in category (2) and a few
in category (1).
It has been found to be good policy to get rid of those in
categories (1) and (2) (after fair trial periods) and to
try to employ, full-time, people who have , thru long-term
volunteer work, shown themselves to be givers and not takers.
Our English affiliate has all volunteers, and only one
paid full-time person. Their experiences have been similar to
ours, at NIRE.
A Swedish organization like NIRE, with all paid, full-time
people, has deteriorated over the years from tremendous
productivity to no productivity, despite an enormous payroll.
Another Swedish organization, with volunteers, and with
many part-time paid people, 1S highly productive, more SO
every year.
The lesson in this is obvious - proven again and again:
In a highly technical field, where there must be risk,
hard work, long hours, innovation, and continuity .... and
where there must be cooperation between persons of different
disciplines (engineers, therapists, doctors, etc), good results
vannot be obtained with disinterested personnel who view it as
a job - rather than a career. I, forone, am 40 years old; yet
I expect (and hope) to be with the NIRE until I retire or die
of old age.
- 14 -
Several years ago, gov't funding set up programs
at Ranch Los Amigos Hospital to train laid off,
unemployed engineers for REHABILITATION ENGINEER.
Later reports indicated that they were mostly not
interested or creative, and most quit the progam,
even though they were earning salaries, as soon as they
could find higher-paying jobs in industry, in any field.
f. SPECIALIZATION OF STAFF PERSONNEL limits their usefulness.
We call this "over-specialization" and avoid it at NIRE.
It costs too much to send a team of 5 people to the home of
one handicapped person. We cannot and do not do it.
We have solved this probiem as follows:
every senior staff member who sees NIRE clients
has his own specialty, for which he is quallified. He may
be an engineer, or a psychologist, or a teacher of the
retarded, or an optometrist, or a handicapped driving
instructor, or a physician, or a speech therapist.
In his own area, he is the "expert". But, he has gotten
additional special training to perform "screening tests" in
other areas, so as to know when to call in other specialists,
etc.
thus, cur optometrist may recognize Usher's Syndrome
in a client with tunnel vision who has a hearing impairment.
Or, when working with a hearing - impaired or deaf person,
we will usually pick up visual problems, if present.
In this way, we find some cerebral palsied cannott
read because of double vision, or poor visual acuity; or
they speak poorly (in a few cases) not because of propbiems
with speech, but because they do not hear high frequencies, etc.
One staff member worjs with a client at one time; but
is able to check not only his area of specialty, but other areas,
thru these screening tests, so as to detect unrecognized
performance ability or sensory problems AND then call in the
proper staff member to assist.
THIS TYPE OF CROSS-DISCIPLINARY WORK is not feasible
for a rehabilitation engineering center limited to a "core area"
unless the core area is very broad and provides for this.
4. HOW ALL TYPES OF ENGINEERING/EQUIPMENT RESEARCHERS SHOULD COOPERATE
The in-hospital engineering researchers can best use their time
to develop ciinical techniques for problems which occur very often,
and to develop hardware, and then arrange for manufacturing companies
to male and sell it.
The commercial companies should, where possible, invest their own
monies, and earn their profits. This should be for mass-producible,
often-needed products that are standardized, preferably for sale
by direct personal contact if to consumers, or else thru professional
dispensers.
- 15 -
Non-profit, individualized-service organizations, such as the
NIRE can best serve individual patients directly, on a person
to person basis
preferably as a last resort, after they
have been thru physical restoration programs first.
NIRE should have funds and means with which to train, equip and
staff other facilities to use newly developed techniques which
are effective with people who have a common, or frequently
occurring disability.
The three types of organizations are NOT competitive at all,
and can accomplish MORE for thenhandicapped cooperating
with one another, than otherwise.
All three types of organization should receive government
support, in an appropriate way
HOW CAN THE GOVERNMENT GET MORE RESEARCH, GUARANTEED RESULTS and pay less?
At present, research grants must be proposed and requested well
in advance of the start of the research. For academic organizations,
this 1S possible. For a clinical research organization, it is not possible
because research is not contemplated until a client needing help is
at hand.
Then, there is too little time to apply for and get a grant; the
patient cannot wait. Only one patient is available, which is not enough
to satisfy the grants committee who review the request.
And, 1f the approach 1S unusual, the people on the committee may
decide that, if it was practical they (being experts) would have thought
of it before, themselves. Not having done so, the stution cannot be
practical.
For all of these reasons, especially the last one staed, this
Institute has not been able to obtain development grants. Hence,
R & D has been done with borrowed funds, resulting in heavy debts.
We recommend an alternative procedure for obtaining R & D grants:
1. The applicant appkies in advance, in the usual way. If approved,
he goes that route. If not approved, than he does as follows:
2 Can abandon the project. Or, can finance it with his own money, or
borrowed money. If he does, he risks losing the money not successful.
3. When demonstrable results are achieved with actual clients - say
not one, but 0 or more, then the applicant should be able to apply
for a "REIMBURSEMENT" grant
to bail him out.
4. This would involve repayment to the non-profit organization of a
certain percentage of the costs, but not 100%. Some amount between
50% and 80% would do. This would be given ONLY if the applicant
divulged his processes, equipment designs, etc.
-16 -
5. The applicant would make application for additional grants,
either for larger pilot studies at other failities, to prove
the value of nation-wide trsining programs (for professionals)
or else, if warranted, for the nation-wide training programs.
Protcols would be established, and the grant would be awarded,
on the appropriate sacle: small, intermediate or large, depending
on how certain the granting agency was as to the usefulness of the
new technique and hardware.
If such retroactive grants had been available to NIRE
(and they were not ), withn the past 3 years, the following would
exist today (which it does NOT):
A. Speech-impaired would be able to be evaluated and have trials with
electronic speech clarifiers locally, anywehere in the U.S.
(They still must come to New Jersey to NIRE)
B. Persons with tunnel vision could be evaluated for and fitted locally
for special field-expander glasses to compensate the tunnel vision.
(now, theymust come to NIRE in New Jersey.
C Persons having one eye, having half-eye vision (hemianopsia),
or having detached retinal problems of certain types, could be
evaluated for, andiitted with speial correcting glasses locally.
Glasses which restore clear, full-field vision, even on the blind side.
(These people must come to New Jersey now.)
D. Severely disabled, including advanced muscular dystrophy and
quadriplegic people, needing or wanting to drive, can be equipped
with a low cost, highly reliable "electric steering & control system"
permitting mouth or finger or toe control of a car.
(Presently, they must come to NIRE in New Jersey, and even this
may insurance). be discontinued because of the unavailability of adequate
E Persons with advanced macular degeneration, who have vision as poor
as 20/800 must now come to New Jersey for glasses which can correct
- them to 20/100 or better.
F. Total quadriplegics needing a breath-controlied electric wheelchair
cannot get them localiy, with adequate training and service, and must
rely on NIRE inNe W Jersey. Were professional training by NIRE
a reality, these people could be served properly, locally.
Obviously, this proosal would have the government pay, after the fact,
ONLY for research proven successful, and not for attempted but unsuccessful
research. We urge that this type of grant not only be made possible, but
that it eventually become mandatory.
MONOPOLIZATION OF REHABILITATION RESEARCH BY GOVERNMENT
The Veterans Administration has been the worst offender. they
have grown from a modest but effective program to a naion-wide menace.
Theyhave ursurped the responsibilities of state Motor Vehicle
Directors, who license handıcapped drivers: they have disrupted the
commercial HAND CONTROL MANUFACTURING BUSINESS,
- 17 -
Most hand-control firms are run by handicapped people, as a small
family type business. The V.A. lured them withpromises that, if their
products were tested and approved, the VA would buy them - otherwise NOT.
So, most sold test units to the VA. Many wereapproved, and others
werenot.
The VA examined and analyzed design features of all, and madetheir
own designs - a composite, in part, with certain changes.
They then set up their own specs, and have forced the companies to
change from their old designs, in many cases, to new VA designs.
Then, when there is no ionger any competition, they will beno
progress - no improvements.
When all companies make their controls the same way, due to
VA specs, then the VA will play one off against the other, to forcethem
to **** lower their prices in cutthroat competitive biading on like
products.
The financially weaker companies will go out of business, and a
few stronger ones will domimate the market.
The states will be affected, because few companies will sell to
otherthan the VA and give up the VA to keep their own designs. So,
all Americans needing hand controls, even non-veterans, WILL have to
buy controls designed by the VA.
If anyone invents a better control, he will NOT be able to
market it, because it will not meet the VA specs.
The VA has been doing the same thing in the field of "environmental
control systems" wHICH enable totally paralyzed people to control
television receivers, radios, lights, heat, cooling, etc. Old companies
not wishing to change their products have been forced out of thefield.
New companies are formed and are selling VAapproved (often VA made)
designs. Later, they will have a standarized product which is the same
for all, and the VA will eitherset up annorder quota system, or have
them in price competition which will bankrupt all but the strongest.
The Veterans Administration, and every government agency must be
forbidden from using its economic power to destroy private enterprise.
The government supported rehabilitation engineering centers must NOT
be allowed to dominate their respective core areas strongly enough to
cause the sameproblems which the VA has been causing.
In fact, it would be Date best it no salaried government employees
were permitted to have grants and funding forthis research; and that
grants should go to non-profit organizations having their own staff
personnel and payroll. The VA should have the right to refuse to pay for
work which is unsatisfactory, on an individual basis, for a particular
veteran patient. But, they nk must NOT have the right to categorically
generally. refuse to buy, or buy and refuse to pay for, a brand or type product,
The licensing authority, the state DMV, should determine if a car and
a driver are safe together, with controls, on the basis of inspection
and road-testing, and the VA should pay or not pay, based. on the DMV
decision for each veteran.
- 18 -
PUBLICITY AND PUBLIC RELATIONS TO MISLEAD THE HANDICAPPED
Too often, government public relations people acted overzealously
to do their specialized jobs, with no knowledge of the technical
advantages and disadvantages of a device
and with little
knowledge of the raised hopes - and the later disappointment they cause.
NASA has publicized ""space research spinoff" constantly. The
eye-movement controlled electric wheelchair; then the voice controlled.
Yet, when tested at a rehab. facility, these devices are fould to
be useful on a limited basis as follows:
BOTH are very complex, often subject to malfunction, hard to
service, and VERY VERY EXPENSIVE. They do NOT fold,
are bulkier and heavier than othert electric wheelchairs. And
their modalities are such that stray light, or stray sounds,
sometimes produce undersired operations. Or else, failure of
a desired operation.
We prefer to use the breath-controlled wheelchair for most
quesriplegics because it is simpler, lower in cost, more reliable
and lighter in weight.
Severe cerebral palsy patients cannot use it for lack of adequate
control overtongue and lips.
Therefore, there are some patients - including the severe CP's -
who can operate ONLY the eye-movement control. For such a person it
is a blessing; for others a burden.
Commercial marketing efforts have failed on these items, because
they cost too much, and are less desirable than certain other types of
electric wheelchairs for many patients.
If the government sponsored training of occupational therapists
in the application of all types of electric wheelchairs, and then
all types were available for training purposes at clinics and
hospitals that have such patients, then patients would get the besttype,
for each patient - so that thse types would help people for whom suitable
but would not burden others forwhom less suitable.
The Veterans Administration has had its staffdesign and develop
breath-controlled wheelchairs, also, of several types, and they have been
seeking companies to make and market it. Again, unnecessary and ultimately
destructive toward private business, and toward other, non-profit
rehabilitation facilities.
This witness feels that NASA should NOT use the popular press for
over-enthusiastically promoting its public image, at the expense of the
handicapped who want what they think they read about. Any and all
approached by NASA and their contractors should be thru clinics,
rehabilitation facilities and rehabilitation workers, directly, and
without newspapr publicity.
I cannot even begin to convey to you people the heartache and
disappointment when We mus explain to a quadriplegic either tha t
the wheelchair 1S poorer for him than his present one, not better -
or that it mightbe useful but costs $ 30,000 and cannot be bought.
- 19 -
POOR COMMUNICATIONS BETWEEN ORGANIZATIONS IN THIS FIELD
One of the best possible investments would be a naion-wide
tie-line, or Watts line, or even the FTS so that one rehab. facility
can telephone another, to converse, to lecture to a group, to
confer on a patient, to discuss hardware design, or to see data
via facsimile, slow scan TV, etc.
Most hospitals already have Xerox TeleCopier facsimile machines,
just as does NIRE. But, they are rarely used because the organizations
cannot afford telephone long distance toll charges. Even non-gov't
facilities should have such lines, because theygive data OUT to
VA and gov't facilities. All would beneft.
Even with such lines, communications would not be open and
totally unrestricted, because of monetary jealousies and professional
jealousies.
Many gov't agencies (the VA and others) and private agencies
W ith gov't funded research programs have solicited data from us on
certain specfic areas of our research progroms--- have gotten the data
and then neve acknowledged where it came from. Then used the data to
write grant requests and research reports, for their own funding,
presenting the data as if they were theoriginal and only researchers.
Duplicate research should be absolutely prohibited, except where
it is done deliberately for good reason, and openly with data taken
from the begiining by the researching organization, and not using
data fromother organizations.
People who do this are insecurem in that they have no confidence
in their own abilities to do original research, and they are dishonest,
stealing both from the donor organization whose research they are
misusing, as well as from the public whose money 1S paying they grant
costs.
Handicapped people often do (as do other people) associate
"bigness" with "better". The fact is, many of the "big" facilities
with impressive buildings and- equipment are poorly staffed and do
poor work. Conversely, some small organizations, with unimpresseive
facilities, do the best work - using their resour es for staff and
excellence, and not for show.
It is as morally wrong, and as destructive to have bio-engineering,
and rehabilitation engineering "grantsman" praising themselves and
knocking others, as it would be for physicians to do this. The handcapped
consumer usually (not always) lacks the technical training to be able to
separate fact from fiction; truth from exaggeration; etc.
He does NOT know whom to trust, whom to believe and whom not to
believe - until after he has bought a useless technical aid; a useless
$ 13,000 wheelchair van he finds he cannot use or drive.
Then, it is too late
Very few people were interested in REHABILITATION ENGINEERING
before Medicaid, before the V.A. programs, and before it became
"profitable".
Regretta bly, severely handicapped are most often being used as
pawns in people's struggle to make money without earning it.
Judith E. Heumann . Center for Independent Living, Inc
Statement Before The Committee On Science & Technology
In this discussion, we will not be concerned with specific areas that
are or are not being covered in research and development efforts, except
perhaps as illustrations. Rather, our emphasis will be on addressing the
large question of how it is that the large amounts of time and money spent
on R&D have produced 80 little in the way of real benefits for large groups
of disabled people.
In order to put the issues at hand into a broader context, I would like
to say a few words about the nature of what for the lack of & better term
I will call the "aids industry" -- that is, the mechanism through which
devices for the disabled are developed, produced and distributed. In many
fields of commerce, it is often said thet "the customer 18 king." A
consumer who wants to buy, say, a car, an appliance or some clothing is
able to determine what is needed, compare products and prices, and, to a
greater or lesser extent, make a rational decision as to what item to purchase.
In the field of aids for the disabled, on the other hand, the customer --
the disabled person -- is more accurately characterised as captive. The
decisions as to what devices will be bought for disabled people are usually
in the hands of others than the disabled people themselves; if a disabled
person has any voice in these decisions at all, it is most often a small
one and, more importantly, an uninformed one, since he or she is likely to
be unaware of possible alternatives. Thus consumer acceptance, which in
other sectors of the economy functions ( at least in theory ) as a self-
regulatory mechanism serving to encourage product improvement, is almost
completely absent as a factor in the aids industry.
I age 2 - Statement
A lack of significant consumer input is apparent upon perusal of
R&D projects undertaken in the field of aids for the disabled. Most
such projects are directed at dealing with a specific narrowly designed
problem (which perhaps is of particular interest to the researcher)
rather than meeting a demonstrated nead of a large group of disabled
people. These projects often involve the application of sophisti-
cated and highly advanced technology; on the other hand, little or no
thought is usually given to marketing considerations or to designing
an item 80 as to facilitate its manufacture in quantity. The fact is,
little comes out of much of the research and development undertaken
in this country except project final reports.
In addition to the considerations alluded to above, there are
other factors which serve to impede the transfer of the results of
R&D from the laboratory to the consumer. For one thing, there is no
organized mechanism for disseminating information about even those
developments in the R&D field which potentially are of wide benefit.
Another, more important impediment to progress is the structure of
the aids industry itself (here we are using the term in a narrower
sense to refer to manufacturers).
The aids industry is a curious mixture of monopoly and what
might almost be called cottage industry. Sene sections of the in-
dustry are dominated by a single firm. (The obvious example here is
the wheelchair industry: approximately 60% of the wheelchairs sold
in this country are made by one company.) In other sections of the
industry, on the other hand, there are numerous very small concerns,
each manufacturing a single item.
'page B - Statement
Both of these characteristics act as obstacles to innovation. The
basic design used for almost all wheelchairs, for instance, is more
than forty years old and studies have shown how it could be improved
siguificantly, But the nations wheelchair manufacturere already have
a guaranteed market for their product; designing and tooling up to pro-
duce a new kind of wheelchair would involve considerable expenditures
of time and money, so why bother? Conversely, one of the smaller con-
cerns in the field might be interested in producing a new item but is
unlikely to have the capital or expertise which is required. In sum,
those in the industry which are equipped to innovate are uninterasted
in doing so, while those who would be innovative lack the capacity.
Several steps can be taken toward insuring that aids and devices
are produced which more effectively meet the needs of the disabled.
1. Standards must be established at the federal
level setting minimum requirements that equip-
ment must meet in terms of safety, reliability
and durability. Such standards already exist
for products in areas where consumers are much
more able to fend for themselves. It is
scandalous that in this area, where a dis-
abled person, as & rule, has little or no
say about what equipment he or she is pro-
vided and where properly functioning devices
are often vital to an individuals well-being,
there are no such standards. Needless to say
disabled people must be intimately involved
in the development of these standards.
age 4 - : ca 7 tement
2. There should be input from disabled people
at all stages of the research and develop-
ment process, from the initial brain-
storming sessions deciding what pro-
blems are to be tackled to the evaiu-
ation of the final product.
3. A national clearinghouse should be estab-
lished to collect, organize and disseminate
information about R&D efforts in the field
of aids and devices.