Ask the Scholar

Document scope · 1 page
doc
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
378464140
label
CST [Committee on Science and Technology] - Panel Report (1) [1976]
core
doc
dtoType
document
pageCount
1
Source metadata
Source extras
naId
378464140
levelOfDescription
fileUnit
recordType
description
ocrSource
nara-archive
Single page context
seq
1
pageIndex
0
type
document
mediaId
c61bf3ca422cdbc5
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: 52009 Folder ID Number: 52009-001 Folder Title: CST [Committee on Science and Technology] - Panel Report (1) [1976] Stack: Row: Section: Shelf: Position: G 5 2 2 2 SCIENCE, TECHNOLOGY, RESEARCH PROGRAMS AND THE HANDICAPPED REPORT by the Panel on Research Programs to Aid The Handicapped to the COMMITTEE ON SCIENCE AND TECHNOLOGY U.S. House of Representatives Ninety-fourth Congress Second Session December 1976 CONTENTS Subject Page Introduction 1 Definitions 6 Approach 7 CHECK-LIST 13 NEED 15 Definition of Need 15 Potential Market 16 SOLUTIONS 19 State of the Art 19 Development of Solutions 21 Basic Research 24 Applied Research 26 Approach Suggestions 27 Prototype Construction & Testing 29 PRODUCTION 31 DISTRIBUTION 33 VOCATIONAL REHABILITATION 38 FUNDING 40 CONCLUSIONS 43 Feasibility of Accomplishment 44 Summary 45 ORGANIZATION CHART 47 FUNCTIONS CHART 51 Recommendations 52 1 INTRODUCTION How can a Research Program using the best of science and technology be put to work for the handicapped? A simple question masking an enormously involved subject, full of all society's human complications, ranging from evolution to engineering to emotion. Getting to the Moon and Mars is comparatively easy; there are no such mathematically definable targets for rehabilitation and the handicapped. Squaring off with the question, the Panel promptly set about asking a lot of questions and listening to a lot of statements from all concerned. From the point of view of the specified subject the answers were disappointing. They seemed to have little relevance and could offer little help in answering two basic issues upon which any meaningful reply to the Committee depends: (1) How many people with what sort of disabilities are there (so that a program of needs and priorities can be developed), and (2) What is the present state of the art in those areas (so the program can move forward instead of backward)? Only when the evidence was all in and digested did it become apparent that there was going to be no ready answer to the primary question because there are presently no sound answers to the secondary ones. If you don't know what you are dealing with how can you tell what to do? 2 Out of the welter of material there did appear, however, a surprising fact: in the world of the handicapped there is no organized plan (in fact not even a disorganized one) which considers the subject as a whole. It is fragmented virtually to the point of stalemate, becomes gobbled up like all littlest fishes in biggest ponds. Perhaps this results from the age of the subject. It has been studied, investigated, reported on, and even legislated for years. And each time it has been chopped into smaller pieces which have been put into defensible little cubbyholes which gradually lose sight of each other and often of the whole of which they are part. There are also other reasons. The handicapped are a special segment of the population who, though not much in view, are a source of genuine concern and sympathy for all and especially for those in direct contact with them. Usually this occurs in relatively small numbers and in isolated circumstances. Consequently each sees the problem in an isolated way and under the circumstances of the moment. This does not make for a well- organized effort but rather a highly intense one, frequently at timing and priority odds with others, easily producing spotty results. Addressing themselves to specific limited objectives they may gain momentary victories but often with sad long- run effects. They lead to a kind of constriction even upon the sort of questions that can be asked --- such as the one presented to this Panel. -- 3 -- In a sense this Report is creating itself. It started out to research a confined objective. But with research there is never any assurance what will be uncovered. Often the results are far more important than the original objective. When all the collected facts and testimony in this case are placed in logical order to arrive at a method of answering the primary question, they actually result in a program and course of action which we believe essential to sig- nificant progress for the handicapped --- the fundamental purpose of the whole effort. The Committee may be troubled by the addi- tion to scientific research and applied research of market research, production and distribution research, product improvement research, economic research --- yet all are proving themselves indispensible to that fundamental purpose. It is noted with interest that in its SPECIAL OVERSIGHT REVIEW OF AGRICULTURAL RESEARCH AND DEVELOPMENT, the Subcommittee of Science, Research and Technology in their Report of August, 1976, took a broad view of research, defining it to include the entire range from (1) basic discovery of knowledge to consumer protection. This Panel's Report takes a similar broad view. (1) DEFINING AGRICULTURAL RESEARCH The Assistant Secretary of Agriculture, Mr. Robert W. Long, appeared as one of the first witnesses in these hearings, and defined the scope of agricultural research for the Subcommittees: 4 (Footnote (1) continued) Agricultural research deals with the discovery, combination, and synthesis of knowledge essential to the continuing efficient production and marketing and the effective use of food, fiber, forest resources, clothing, and shelter under changing economic, social, and political conditions in the United States and the world; it deals with the protection of producers and consumers and with the wise use of natural resources; it involves the elucidation of a broad spectrum of public policy alternatives and consequences for people on and off the farms; and it includes research designed to add to basic knowledge that will advance these aims (I:p.41). He went on to state that scientists of many discipli- nary backgounds including physical, biological, economic, social and political, would be involved in the agricultural research process. The Subcommittees intended the hearings to focus on the food-related aspects of the agricultural research system. Chairman Symington explained this in his opening remarks at the second set of hearings and defined the elements he considered to be part of agricultural research: It is our preliminary view that agricultural research should be directed both toward: securing an abundant supply of high quality, inexpensive and nutritious food for the citizens of this country and for the rest of the world, and achieving the general improvement of the quality of rural and urban life. Agricultural research is involved in all aspects of production processing, packaging, transportation, storage, and distribution. Between the appropriation or allocation of funds for agricultural research and the achievement of its goals are dozens of institutions within which scientists are engaged in basic research, applied research, technological development, and the extension of results. 5 One other factor should be mentioned in this introduction. In dealing with the handicapped one must constantly remind one's self how compara- tively fragile they are, physically, emotionally, sometimes both. Their personal ecology is in very delicate balance. Many are in constant discomfort if not pain. Even the hardiest are deeply sensitive to the seeming inequities of their fate. And they have long lonely hours to ponder and compare them. Such a little thing as a curbstone or a door knob can be insurmountable. Merely getting up or going to bed can take hours. They see things in a very special order of magnitude which must be understood and respected in any effort to lighten their load. Taken out of context their problems easily appear irrational and inconsequential, quickly get miscast ---- the fate of too many past legis- lative efforts in their behalf. The normal form for this Report would be just such an out-of-context presentation --- inverting the order of things to put conclusions first and facts last, in their case producing all sorts and combinations of right and wrong results and reasons. To avoid this hazard the Panel is first presenting a concise statement of the facts as they revealed themselves so the Committee may be in position promptly to evaluate the recommendations. 6 Let us start with a few definitions. For the purpose of this opinion the term "HANDICAPPED" is limited to persons with physical, mental and/or emotional problems which daily render their lives unusually difficult. "SCIENCE" means a combination of past, present and future knowledge of natural laws. "TECHNOLOGY" represents the totality of the means employed to provide the necessities of human sustenance and comfort. (Webster) 7 APPROACH: A handicap is a very personal affair. Therefore it is logical to approach the subject on an individual basis. In spite of his disabilities the handicapped person is first and foremost an individual anxious to ----- and to a large extent compelled to --- adapt his life to that of the world of individuals around him. He is not living in a world all his own (apart, perhaps, but not alone) but one occupied by a vast majority of people handicapped in other ways. His needs in relation to science and technology can (and should be) expressed by the same diagram that is applicable to all other individuals THE INDIVIDUAL WHEEL By understanding the laws of nature (science) and organizing them according to his needs (technology), the individual rolls more or less smoothly through life. TECH A & DETERMINATION OF PRODUCT NEED DISTRIBUTION IND DUAL 2 DEVELOPMENT Us OF ITEM SOLUTION PRODUCTION There are four spokes in the basic wheel. 9 - THE SOCIAL WHEEL CUSTOMER Bag CUSTOMER EDUCATION SERVICE REASIBILITY MODERN DEFINITION MEED / INARKET PRICE OF THE ART RETAILING DEVELOP SOLUTION $0.0 BUILD PROTOTYPE RODN MODEL TEST and DESIGN When the individual becomes part of a modern society the spokes become more refined. 10 THE ECONOMIC WHEEL M 4 EDIUM SA OF the LL, G M TECH, CHANGE CHE AW TECHI G CHAN ONE M.O. a E is 0 OF MEDIUM 4 As a least common denominator of exchange of effort, money provides cohesion ------------------------- makes it possible tp combine and adjust the many elements of modern society and science and technology. 11 From the most primitive beginnings to its present sophisticated level the preceeding has been "The Technological System". It is pracitical, logical ---- virtually immutable. Establishments may change the words and the emphasis but not the system. When we don't follow the rules ----- leave out or maladjust a spoke of two i the wheel collapses or at least the ride gets rough, we travel the hard way until we make repairs. NOTE The foregoing basic logistic facts are presented merely to provide a solid operating foundation upon which to construct a program for the handicapped. Without such a base this sensitive subject flounders around in a welter of confusing, emotional, fruitless chaos. - 12 - Now let us see how the System can be made to work for the benefit of the handicapped. 13. HANDICAP PROJECT $ EVALUATION CHART- 14 TITLE PROJECT No DATE CATEGORY Converting the wheel into a I NEED ALLOCATED SOURCE EST. tabulated chart it becomes an T SEE COMMENT EST. TO OF (os TIME evaluation CHECK-LIST. It A FUNDS provides a uniform frame of its M reference wherein all the elements of each proposed do project may be compared with 1 their beneficial and financial Z consequences. Without some POTENTIAL DOMESTIC 2 such standardized system no MARKET FOREIGN 3 yardstick can be applied and no intelligent selection DESIRED LIST PRICE 4 accomplished. STATE OF THE ART LA SOLUTION SOLUTION BASIC 6 RESEARCH The success or failure of an undertaking depends DEVELOPMENT APPLIED 7 upon its basic validity, its organization, its CONSTRUCTION 8 PROTOTYPE financing, and the people who execute it. In TESTING 9 this case, there is no doubt about its validity. PRODUCTION DESIGN $ MODEL 10 Its organization is another matter. PRODUCTION MODEL TESTING 11 It was logical that during the Panel's PRODUCTION TOOLING & SET-UP 12 hearings, visits to rehabilitation centers, and studies of past reports, every item on the QUANTITY CONTRACTED FOR 13 MANUFAC- TURING CHECK-LIST was repeatedly considered --- they are UNIT COST PER, CONTRACT 14 all part of the basic technological system. TOTAL COST PER, CONTRACT 15 But each appeared under so many guises that WHOLESALING 16 citing them individually would be as chaotic and 17 DISTRIBUTION RETAILING repetitious as the times and ways in which they CUSTOMER EDUCATION INSTRUCTIONS $ MANUALS 18 appeared. Instead all the fundamental facts, PUBLIC RELATIONS (MEDIA). 19 evidence and data have been organized into the logical order of the CHECK-LIST and are presented CUSTOMER SERVICE SERVICE MANUALS 20 in that sequence. SERVICE FACILITIES 21 EST. TOTAL COST 22 LIKELY LIST PRICE 23 CONCLUSIONS EST. TOTAL TIME 24 FEASIBILITY OF ACCOMPLISHMENT 25 SUMMARY 26 RECOMMENDATIONS 27 15 Item 1. NEED DEFINITION OF NEED Since a handicapped individual is one with "physical, mental and/or emotional problems which daily render his life unusually difficult", the combinations and permutations of his needs are virtually infinite. A broad definition would include everything tailored to make his life less difficult --- a statement ranging from pure gadgetry to subjects so abstruse as to be barely definable. A specific NEED is the starting point of the whole process. But there are many needs, all competing for attention and support, all requiring comparative evaluation. Each is only the first spoke in the wheel, useless without the last. Following the Check-List we install them all --- and can then stand back and make intelligent comparisons. 16 Items 2 & 3 NEED continued POTENTIAL MARKET Most seem to agree that a basic tenet of a mass society is "the greatest amount of happiness for the greatest number of people". (Unfortunately not as many agree how to achieve it.) This automatically generates a "market survey" --- preferably an accurate means for determining the opinions, needs and desires of the greatest (and less great) numbers of people. This is as important to a product as it is to a legislator. It is one of the most difficult and pressing subjects in the rehabilitation complex and repeatedly came up during the Panel's hearings. How many handicapped persons are there and with what kinds and degrees of handicaps? Ready-answer figures presently range from 15,000,000 to 50,000,000 which makes them meaningless. On the basis of such data no reasonable person, corporation ---- or government ---- would (or should) invest. NASA's efforts to cooperate with industry for benefit of the handicapped have mostly been defeated by this one problem. There is need on a nationwide scale for a census organized on lines similar to the Veterans Administration's "Catalog Of Disabilities" wherein each handicapped person can find his capabilities enumerated (in the V.A.'s case for compensation 17 purposes but in the private sector it could be, among others, for market survey purposes). Few major production benefits to the handi- capped are going to be achieved until such census (2) statistics are available. FOREIGN MARKETS The relatively good health of this nation probably means that its handicap needs are minimal compared to the rest of the world. If foreign markets could be integrated with our own it would considerably reduce unit prices for all concerned and produce as many foreign as domestic advantages. The elimination of foreign and domestic trade barriers relating to import and export of assistive devices would provide an important stimulus for both markets. (2) In developing such data care must be taken to achieve maximum accuracy lest the figures become suspect and worthless. The subject of the elderly and their "loneliness" frequently came before the Panel as though there was a legislative obligation to cope with it. It was expressed in terms of "lack of motivation" and "hospitals being dehumanizing" and "shut-ins being forgotten". No doubt all these are true but old age is a late hour to start infusing motivation --- that should have been done in school. Is not loneliness "looking in the mirror and seeing no one there"? It is the product of a lifetime and now can be assuaged only by one-to-one acts of kindness, not by all the combined science and/or legislation in the world. This age-old loneliness problem of old age is not the kind of handicap a census will ever cure nor one that should be added to the list. 18 Item 4. NEED continued DESIRED LIST PRICE This item is directly related to the market survey. It represents what the market feels it is willing and able to pay for the product ---- an important question from the outset. Whether or not it can be achieved is fre- quently apparent from the start and has an immediate effect upon how, if at all, to proceed with the project. 19 Item 5. SOLUTIONS STATE OF THE ART Especially in the field of rehabilitation and the handicapped, embarking on a new project, be it hard or software, without first investigating the state of the art is as much folly as starting without a market survey. A list of the number of projects in this field (both current and completed) would be many hundred times the length of this Report. While not specifically addressed to Science and Technology, both are inextricably present on a vast scale --- so vast indeed that few persons, if any have a grasp of them all. Science and Technology include virtually every facet of life and its occupations. The high rate of modern progress is largely a result of efficient interfacing of the two. To accomplish this for the handicapped is the task placed before this Panel. But one of the best modern tools for doing it ---- the data-bank ----- is missing. Many industries and professions have created extensive computerized data-banks which are price- less tools in the creative process. Unfortunately none seems to zero-in on matters relating to the handicapped. 20 There are more than 100 Government agencies which deal with problems of the handicapped. Each issues reports of its activities and findings which add to the mountain of unrelated date. There are approximately 1,000 private organi- zations and institutions engaged in work with and/or relating to the handicapped. Their experience and knowledge is enormous but again lies buried in the mountain. There is no computing the loss of experience and waste by duplication. At best the right hand hath only a shaking acquaintance with the left. There is urgent need for an organization to act as a clearing house of information and as such hopefully stimulate coordination of effort (3) in the entire field. The creation of a computerized data-bank for problems of the handicapped along with the well defined census, should be among its first preoccupations. (4) (3) While efforts to coordinate the work certainly exist, they appear to be among only certain agencies (like the National Science Foundation and The Rehabilitation Services Administration) and by no means interlock the vast web of activities. (4) This is an area where the handicapped themselves could take an active part and where their knowledge of their problems could be integrated into the effort (an oft-repeated request at the Panel's hearings). 21 Items 6 and 7. SOLUTIONS DEVELOPMENT OF SOLUTIONS Solutions come from a creative combination of basic and applied research. The SCIENTIST, doing basic research, tries to understand (rationalize) what he sees. The INVENTOR, doing applied research, tries to see (materialize) what he understands. The former works on a micro/macrocosmic scale, the latter on a human scale. Though they appear to be working to put each other out of work, each depends upon the other. By understanding more of what the scientist sees, the inventor sees more ways to enable the (5) scientist to see more. The important factor is to be sure the policy makers understand this paradoxical relationship and apply it in allocating priorities. Basic research is an area foreign to the average person. Because it is highly specialized it has a language all its own ------- and, like all foreign tongues, is enigmatic therefore distrusted. (5) Maybe if they work together long enough they will reach Dr. Zen's state where there is nothing at all to see. Obviously impossible. legislating matters of this importance is virtually 22 Most frequently its benefits are not directly apparent; generally the engineering of applied research and their inculcation into resulting hardware completely disguises them. Much of the value of NASA's work is concealed by just such processes and causes many to question the validity of trips to the moon ---- which in themselves are basic research. This attitude was apparent among many of the handicapped who testified before the Panel. They felt there was more need for "implementation" (applied research) than for basic research. Their attitude is understandably that they are already handicapped therefore forget what is down the road; what are you doing for us now? One is the long term point of view, the other the short term both are valid and fortunately the two are not mutually exclusive. They remind one of the aged but dynamic mother who tells her also elderly son: "Now listen to me, son. This is important. Make sure you die healthy!" In her maybe unconscious wisdom she is speaking of preventive medicine, a tremendous field of basic research. The future, maybe, but a future with a lot fewer handicapped when it becomes the present. There is need for much educational work on this subject among all segments of the population, handicapped included. It takes the kind of 23 enlightenment that comes from basic research to appreciate basic research ---- a slow, bootstrap process. Unfortunately in the use of our sophisti- cated modern language we tend to create tight little pigeon holes upon which we affix names and titles as though they were closed to all others. (We are increasingly doing this by misusing computers.) The terms Basic Research and Applied Research, and the titles that go with them, are in similar danger. True, these are the areas where the initial creative action is. But nature does not lock her scientific facts in boxes and give the know-how to open them to a privileged few who we might consider seem best able to decipher them. They are there for anyone with the wit and will to "see". Yet few seem given to see them --- and then in the most unexpected ways. Perhaps it is like Heraclitus said: "If you do not expect it you will not find the unexpected for it is hard to find and difficult to believe." Out of the most unexpected corners will come individuals (always individuals, even though they may work for a thousand bosses or just for themselves --- this is the basis of patent law}, individuals with the most unexpected solutions (the "stair-cat" wheelchair for example). Generally they are gifted with wide-open minds, imagination, dedication, courage and incentive which must somehow amalgamate to achieve the desired goal. 24 Together they represent the spirit of individual achievement which has made this country. Like any spirit, it is timid and sensitive. Yet, when handled properly, it can move the world. Any legislation bearing on this independent spirit should be carefully considered for without its infusion the wheel of progress is turning on a flat tire. BASIC RESEARCH Considered alone the process is extremely costly and (of all things) appears extremely unscientific. It is a process of assembling ---- and trying to understand ------------------------- a constantly moving microcosmic/macrocosmic jigsaw puzzle. There is no predicting its timing or exact results often they are at wild tangents to (6) the original purpose but they are never lost and eventually pay tremendous dividends, for every breakthrough moves closer to eliminating the fundamental problem. (6) The Hyperbaric Chamber and Cerbral Circulation Study at the Rusk Institute of Rehabilitation Medicine was initiated primarily to investigate STROKE. The resulting equipment and techniques will probably find their first use in the field of drug addiction. 25 At that point, all the stop-gap arrangements, the special treatments and cares and services and considerations and expenses which are an integral part of many presently accepted health and rehabili- tation techniques become largely redundant --- a saving not only in the pursuit of happiness but also in monetary terms astronomically exceeding (7) the basic research costs. There are also pitfalls. The nature of such research makes it prone to be "conducted in a vacuum", an exercise highly gratifying and exciting to its usually solitary practitioner. The excite- ment lies primarily in solving the mystery at hand. As soon as this is accomplished, like a once-read detective story, the researcher hastens in search of a new thriller, often leaving the old one to suffocate in the vacuum. This is why special efforts must be made to bring the basic research experience, failures as well as successes, across the border into the world of applied science. (7) Consider what now-obsolete polio treatments would cost today compared to the present vaccine --- and imagine the same results for prenatal birth defects or spinal cord repair. Because of its less obvious qualities basic research bears the same relationship to the handicapped that applied research does to the so-called able bodied. 26 APPLIED RESEARCH This is where the tangeable, visible, usable results of basic research are adapted to man's needs and desires. Many problems of the handicapped are of a fundamentally logistic nature --- lack of locomo- tion, speech, hearing, seeing, etc. Until the day comes when basic research can magically recreate them, there is urgent need for substitute solutions. None will ever equal nature's incredible gifts but the need is too great to be denied. It is not unreasonable to feel that creative applied research presently can offer solutions not too far behind the scientific state of the art. Failure of the solutions to reach those in need is primarily due to lack of research into the serious problems of manufacturing and marketing economics. The same lack of solid information makes it doubtful that any list of basic and applied research projects which this Panel could presently submit would be meaningful. Such a list can be intelli- gently developed only when all the facts are available and comparative evaluation becomes possible. STRIKE 27 APPROACH SUGGESTIONS Some problems that appear virtually impossible to solve could be materially relieved by a slight change of approach. For example one frequently hears that public telephones and elevator control buttons and cafeteria counters are too high. This is undoubtedly true for present day wheelchair designs. But rather than change all the telephones, elevators and counters in the country which are designed for the average person it would be a lot easier and more readily accomplished if the height of the wheelchair seat could be adjusted with a spring-compensated lever to counterbalance the occupant's weight. In the area of PUBLIC TRANSPORTATION two approach changes might be useful. Start in the minibus field. Many small cities use van-type vehicles instead of large coaches. The vans would be relatively easy to adapt for the disabled (including wheelchairs) and much less expensive to experiment with and learn how to integrate into an urban operation. The handicapped are understandably impatient about getting the job accomplished on a grand scale but putting such busses on the street is only the tip of the iceberg. It too started with a snowflake. In the field of PERSONAL TRANSPORTATION (highway), when enough market statistics are accumulated to support the cause, find a small enterprise (well neigh garage) that makes things like dune buggies, 28 preferably one where the owner has a personal or family disability transportation problem. He will put together a wonderful concoction of everybody's parts for a price one wouldn't believe. It's amazing what the little fellow can do. After all he built this country and will keep on building it ----- and he will find a way to manufacture the vehicles, too. Leave the "majors" alone. They are in a different ball park, have totally different problems --- and believe it, they are problems. They work in production millions and billions. Asking them to work in thousands is like trying to harpoon a whale with a toothpick. The above are a few examples of where a change of approach might prove beneficial in the field of applied science. 29 Items 8 and 9. SOLUT IONS continued PROTOTYPE CONSTRUCTION AND TESTING With hardware the effort is incomplete until a satisfactory prototype is produced and tested. It is wise to permit the individual whose idea is being developed to carry it right through from inception to production and if possible even into production. While he may not be the most qualified person available in relation to the particular subject, the fact that it is his idea will help him find ways over the most incredible barriers which would completely stop most others for whom the project only becomes another assignment. (This relates to previous remarks about the spirit of accomplishment. The world is full of fine achievements and useful products which otherwise would not be.) Software ideas are generally verbal or manipulative (techniques) in character and come full-blown from their creator. TESTING of prototype hardware is relatively simple for results are quickly apparent. Tests can be devised which the equipment either passes or fails. Testing software is inversely more difficult. Results are usually more subtle to detect, standards more difficult to establish and tests more sensitive to run. 30 Consumer The Government has excellent facilities for conducting both hard-and software tests --- in Veterans Hospitals, Rehabilitation Research and Training Centers, and National Health Programs. The private sector also has excellent test facilities and a very willing assemblage of testers who made it clear to the Panel that they feel neglected when it comes to such programs. Again, the creator of the idea should be actively included. In spite of its name, it is too often forgotten that the whole purpose of a Test Program is to discover shortcomings --- and it is a rare program that cannot claim this accom- plishment, but not too rare a one that is not distressed by the resulting confusion of time schedules and travel-and-per-diem-funds and the cussedness of inanimate objects and is ready to throw the whole thing over. Left to the testers alone, the product has proven itself unsatisfactory and the project is "down". Perhaps. But to its creator it is not "out". This is where his talents rise to the challenge. He may have to go all the way back to the drawing board but no mountain will be unturned. It's his baby and when a man has a baby anything is possible. 31 Items 10 through 15. PRODUCTION Especially (but not only) among the handicapped there seem to be two popular misconceptions relating to new products: (1) that once R & D is completed the product is ready to market, and (2) that often at this point manufacturers refuse to cooperate because they can see no profit. Both misconceptions are based on half truths. When the R & D is complete, all the way through prototype testing, the road to market is not half travelled. Ahead still lie the formidable undertakings of production design and model building, production model testing, and production tooling before the production line even begins to roll. And this time the test program is usually more exten- sive than the prototype testing ---- again an area where Government facilities are widely available, ready and willing and where the manufacturer, the original creator (8) and the consumer should be permitted to take an active part. And when at last the production line is ready to roll there has to be a ready answer to how long and how many -- in fact the answer should start developing way back in the "need" stage and should become increasingly refined as the project advances. (8) It is even more crutial than at the prototype test stage to include the originator of the project in the production model tests. This is particularly true where delicate processes and techniques are concerned. Production engineers and executives and technique practi- tioners often feel that "inventors" are impractical when it comes to large scale operations. Usually not knowing the background of trials and failures that the inventor went through, they not in- frequently make changes which produce results they themselves do not comprehend and tend to blame on the idea and its originator. Many a good cause has been lost at this expensive point where inventor and producer alike must practice special cons traint not to let the human element ruin the job. It happens too often. 32 Of course no manufacturer is (or can long afford to be) enthusiastic about manufacturing a product on (9) which he goes broke. Even a wealthy government has its limitations. But under the heading of "public interest" a government can do many things a private enterprise cannot afford. It can for example place a bulk order which makes it economically feasible to manufacture a sufficient quantity of an item to bring the price within the means of a sufficient number of customers to balance the budget. In this sort of transaction the government would essentially operate as a no-interest banker. The Small Business Administration has been suggested as a vehicle for such operations and the potential should be investigated. This is a fundamental economic problem in the handicapped community and its solution would represent a great step forward for those who cannot take it by themselves. (9) Establishing and enforcing government standards for products for the handicapped not infrequently arises. While there may be instances where it would benefit, there is little doubt it would constrain development, increase prices, and add government costs for enforcement. In the field of prosthetic and orthotic devices, where the Veterans Administration is very active, they have observed that the industry has established its own quality standards and has done a good job of maintaining them. If the problem ever becomes a serious one, use of Underwriters Laboratories might be a better way to go. Considering all the disincentives presently lying in the way of attracting manufacturers into the field, such an action would be of dubious value. 33 Items 16 through 21. D ISTRIBUTION That distribution represents half the price of the average product demonstrates its importance and its scope. It is the crutial point at which a product and its user interface. It is the final segment in the technological wheel. It is also an area of vast disappointment for the handicapped and of serious neglect by those who plan for them. It catches the brunt of the lack of organized, imaginative endeavor which starts all the way back with the missing market surveys. Distribution (known as "deliverability" in the handicapped community) involves much more than merely packaging, transporting, and ringing the cash register. It encompasses the complicated subject of public education, of simple instruc- tions and complicated user manuals, and public relations via the media which encourages competition. It also includes service manuals for hardware and service facilities to provide repairs and replacement. Devices and systems for the handicapped generally provide only an improvement in their condition, never a total cure ------ consequently they are never entirely satisfactory. Distribution has to cope with the resulting complicated job of human relations --- especially among the usually sensitive handicapped who are especially in need of assistive services. 34 The use of such devices frequently requires special training which in turn comes from specially trained people. Manufacturers and distributors generally attempt to provide such training with their products. Not always successfully. It is no easier to find good help in this field than any other, perhaps harder. Such service takes time for which either the manufacturer/distributor must pay (or increase the price) or the salesman must contribute his time (taking it away from other sales). There is no easy solution to this issue nor to that of ongoing assistance to the handicapped. This really calls for devotion. In this day and age it is difficult to get a good servant at any price, and then government inflicted 8-hour days and 40-hour weeks aggrevate the issue still further. People prefer to work in factories and, when there is no work there, just collect unemployment. How many at that point go out to help the handicapped? It is a sad commentary on mankind's nature that what seems like such a good idea (unemployment compensation) gets misused on such a vast scale. It has been suggested that the more disabled could be cared for by the less disadvantaged --- revitalized alcoholics or drug addicts or prisoners. Students of the social sciences would find it good training. But all such sources are difficult to mobilize, depend upon, and perpetuate. It calls for the kind of devotion which "man's best friend" seems uniquely enthusiastic about giving. 35 Surely he could be trained to serve in a lot more ways than he now does. He could pull wheelchairs, open and close doors, turn lights on and off, put out the trash, etc., etc., plus being a good companion and guardian. (Saw just a homebody pet the other day who would fetch beer from the refrigerator and "play" the piano upon request.) This concept deserves further development. SERVICE for mechanical assistive devices is an area in need of imaginative effort. Service organizations abound in every city and are spread far and wide across the country. They repair everything from refrigerators to television sets and provide home service. They could be trained to handle anything from wheelchairs to electric beds. Manufacturers should be encouraged to utilize such facilities. The handicapped themselves through their own organizations could also generate a nation-wide Association to which such service shops could belong and acquire business as well as good will. The handicapped could run it themselves through such a simple expedient as a telephone answering service. Funnelling all the service calls through one channel would give them the sort of customer clout they now lack. (This is an activity which could be triggered by a lively P/R program, certificate-of-award incentives, local news releases involving the 36 service organizations and town officials a (10) little ceremony making the awards) Distribution (known as "deliverability" in the handicapped community), for all its technical faults and shortcomings in the eyes of the disabled, is still an area which they should not deal with too harshly. It is the marketplace where the smart manufacturer goes to discover the need. He listens hard, he counts heads and he goes home with his market survey and feeds it into his personal computer which is as "human" as anyone else's. (We are almost back where we started.) It is said that in the market place every customer is a king. It is his chance to say what he wants and if his demands are reasonable and sensible and nicely put he has a good chance of having them filled. But sometimes even a king gets his head cut off when he wants too much, is never satisfied (admittedly a very difficult condition for one with a handicap to attain). This particular market place is one for soft voices and gentle words from both sides. (10) Judging from testimony before the Panel, it appears a good deal more could be accomplished in the field of public education relating to the handicapped. Most of the effort seems to be among the handicapped talking to each other. This is prone to result in antagonism against the unhandicapped and alienates the two. (This is certainly true when it comes to the handicapped and the business community.) To a large extent the handicapped feel outcast from the system, mostly a result of their not understanding the system and asking it to work in ways that it cannot handle (any more than they can handle certain of their own problems). 37 Some good and important P/R work could be accomplished in helping them learn these basic technological facts -- which the general public also little understands but has less need to know. The same general public could profitably be taught that one of the primary purposes of education is to help the weak to be strong and the strong to be gentle. Architectural barriers are a very hot subject and has made good headway among city planners and architects. However it is overlooked that we live in "The Age of the Great American Contractor" who designs his houses on the kitchen table using local building suppliers' catalogs. Few have ever gotten the handicapped's word. (They would probably be among the first to heed them for frequently they are primarily salesmen and then builders.) The same thing goes for plumbers and electricians and bathtub builders and toilet and washing machine makers. (Make everything position-control and touch-identifiable. There's lots of room for P/R work there). Public relations can include a lot more than press releases. It is a fertile field for imagination, can include competitions for the best solutions to handicapped problems in all areas, prizes and benefits, designs, games, stories, thoughts, mental stimulation for those with physical impedi- ments. With little or no modification to the present system of educational grants, the Government could contribute materially to the success of such a public relations program. It could generate accredited courses on the subject in universities, have them included in correspondence courses for the home- bound, and provide special teacher guidance as part of the educational process. Public relations is an area in which many of the handicapped themselves could excel. So far as present results are concerned one might get the erroneous impression that they are incapable of expressing themselves. 38 VOCATIONAL REHABILITATION In addition to evaluating hardware projects the Check-List can also be applied to software which includes a big segment of the rehabilitation world. Psychologically the handicapped individual is apt to be on a wavelength all his own. Often his mental and emotional tuning need some special adjusting which in turn require special training for the tuner. There are many fine and dedicated organizations working in this area. They train aids, nurses, therapists, medical students, the handicapped themselves and their families. During hearings it was frequently stated that there is a lot of need for training doctors who seem to know little about special needs of the handicapped and available assistive devices which they fail to prescribe. Especially for the newly disabled trained specialists are invaluable in rebuilding lost confidence, new hope, motivation, a desire to reenter the world with all its frightening ways. The vast number of natural and unnatural disincentives are also their area. A disabled person is often financially better off being paid by the Government to stay home and do nothing than getting a job which costs him not only a lot for transportation plus a helper, but also the stipend --- a degrading situation. 39 There is need for policy change to provide financial aid during a transition period until take-home pay at least equals what can be gotten for doing nothing. Those with the will and courage for self-help deserve all the additional help they can get. Self esteem is one of man's most fundamental and fragile requirements. Its loss can be as traumatic as the loss of any physical function. Most who suffer the latter also fall prey to the former. Both research and applied efforts in this field should be given the same sort of encourage- ment, consideration of need, evaluation, and support as is given their physical counterparts. 41 carry some of the financial burden? Could it not be considered a form of insurance? All of us are subject to accidents. Few of us will "die healthy". These issues are at rock bottom of the whole subject of the handicapped. In fact they are so much at the bottom that they become exceedingly troublesome when they occasionally emerge. Yet their continued submersion is perhaps the principal cause of so few tangible results from the 21.5 (11) billions dollars spent annually for the handicapped. One is reminded of Einsteins reply when asked why man has made such great progress with scientific problems and so little with social ones. He immediately pointed out that the latter are infinitely more difficult. We have already seen that finding scientific solutions for the handicapped is not the only difficulty. It lies also in getting those solutions into their lives. That is far more difficult than it seems for it surfaces that rock bottom problem. It is relatively easy to get a handle on purely scientific R & D. It is a neat package. It can be described in erudite terms that few can challenge because few understand them. Its failures are not much talked about and its successes are to the glory of all mankind. It is in the public domain. An orderly contract can be devised to set it all in motion and audit its progress. It requires (11) According to HEW's "Executive Summary of the Comprehensive Needs Study", 10 June, 1975, page 22. 42 little or no plumbing the depths of human equations, of freedom of enterprise concepts, of the wisdom of Solomon. But getting a handle on manufacturing, distributing, market surveying, customer servicing, these are all hoses of another tail that easily gets caught in a lot of painful philosophic barbwire. There is no glory here like taking that first big step for mankind or eliminating polio. There is only the nitty-gritty of day to day business competition to be balanced against how far to go "in the public interest". This is the toughest research problem of all --- how legislatively to inject funds into this area without disturbing the free enterprise system and simultaneously encouraging the ever-ready rip-off artist. To continue dodging the issue is an enormously expensive way to concede futility. The answer is not to be found in the kind of superficial look this Panel can confer. It can only be pointed out as a research project of the utmost importance in solving the problems of the handicapped. It virtually becomes a "need" in its own right, requiring an organizational entity that can draw this highly fragmented issue into a broad and successful cooperative operation. Its solution probably will involve Government pump-priming (possibly through the Small Business Administration), private industry (as much as possible involving the handicapped to help themselves), and non-profit organizations (charities and foundations) to coordinate the effort and account for the results. 43 Items 22 through 24. CONCLUSIONS PRELIMINARY TOTAL ESTIMATES No matter what form of cooperative éffort may finally be evolved, the Check-List's funding column will be needed for both evaluation and operational purposes. Different phases of a project may be funded by different sources. Breakdown figures of the individual phases help achieve a more valid Estimated Total Cost and Likely List Price. It now becomes possible financially to compare the original Desired List Price with the newly developed Likely List Price and determine whether the project has a chance of standing on its own economic feet. 44 Item 25.C O NCLUSIONS continued FEASIBILITY OF ACCOMPLISHMENT *** With all the preceeding facts a project's overall Feasibility of Accomplishment can be considered. This is a strategic psychological issue. Pie in the sky is a special temptation where suffering is involved. Since hope does not spring eternal it is usually better to keep it alive with realism than to shatter it with unrealistic, unfullfillable promises. It is natural to strive for the ideal. It is more difficult to settle for what is less, but achievable. Every project's chances of success should be realisticaly evaluated. Has its time come? Is the likelihood of success commensurate with the effort required or would it be better invested elsewhere? Pouring in vast sums of money when the time is not right is no more effective than Omar's tears. Just as there is a coefficient of friction with materials, there is a coefficient of time with learning and problem solving. Adding money may shorten the interval but nowhere near propor- tionally to the added funds. Scientific knowledge is often learned by osmosis. 45 Item 26.CONCLUSIONS_continued SUMMARY ******* This Report is essentially a telling of it as it is. It is of course possible for this Panel to assemble a list of impressive scientific projects for learned pursuit but that would simply be mis- leading itself and the Committee. Impressive though it might appear, there would be no sound basis for comparative evaluations, no legitimate chance of it being executed, and questionable possibility of anything effective reaching the handicapped. The subject is so diffused, so widespread, and present efforts to cope with it are so fragmented that effective results are difficult to achieve. The cure is almost a bootstrap situation. It needs the facts to pull it out but it needs organization to get the facts. To produce an effective program which does for the handicapped what all want it to do requires a cooperative effort which transcends the confining boundaries of public and private sectors, brings them together with an integrated program to achieve their already common goal. But a focal point has to be provided for such a cooperative effort. Since it is an endeavor in the national interest it seems appropriate that it should be triggered by national legislative action. This will no doubt require crossing legislative boundaries. 46 In the thirty working days that the members of this Panel were requested to devote to the Committee's question it is not possible to develop detailed structure for such a "focal point" organization. However, its salient features can readily be found in the myriad recommendations which were presented to the Panel and in those which the Panel members themselves added to this Report. It would take pages to describe them. Many of them were frequently repeated. Much like with this Report, simply listing them has created the accompanying FUNCTIONS CHART (page 51) which itself eloquently speaks for the need to funnel the endeavor into one focal point. Collectively they represent the integrated job that needs to be done. Almost more eloquently they also tell why it is not now getting done. Operationally every box in the FUNCTIONS CHART would supply projects to be analyzed in a CHECK-LIST (similar to the one serving as framework for this Report) or would provide data to be used in the comparative evaluation of other projects. Visualized as a quasi-Governmental office, its ORGANIZATION CHART would take the general form shown on page 47. All Government Agencies dealing with problems relating to the handicapped would automatically be "Regular Members". Any and all similarly occupied organizations in the private sector would be eligible to be "Associate Members". From each ORGANIZATION CHART (TYPICAL ONLY) COMMITTEE ON SCIENCE & TECHNOLOGY REGULAR MEMBERS ASSOCIATE MEMBERS ALL GOVERNMENT AGENCIES PRIVATE SECTOR ORGANIZATIONS DEALING WITH PROBLEMS DEALING WITH PROBLEMS RELATING TO THE HANDICAPPED RELATING TO THE HANDICAPPED NATIONAL ORGANIZATION FOR REHABILITATION $ THE HANDICAPPED PRESIDENT (ROTATES ANNUALLY) DIRECTOR (PERMANENT) ADVISORY 0 A R HEW VA NSF DOT SBA NIH HUD NASA UNIV REHAB LABS MEDIA LABOR INDS'T MARK'T FOUND'S MANAGEMENT FUNDING DEVELOPMENT PRODUCTION DISTRIBUTION VOCATIONAL 48 group an active Advisory Board would be drawn. The Boards would work individually and collectively. They would aid and advise a permanent Director while an annually rotated President (from one of the Regular Member organizations) would provide legislative liason. A Department Executive would head up each of the tentatively six areas of operation. They would be assigned on a relatively permanent basis (depending upon their suitability and circumstances) from the most involved Regular Member Agencies and from Associate Member organizations, foundations and/or corporations that actively employ and are interested in problems of the handicapped. They would remain in the pay of their parent organization but their expenses would be defrayed by the National Organization. Other staff members would as much as possible be recruited and remunerated in the same manner. Initially the entire organization is not visualized as requiring more than thirty people, most of whom would be "on assignment". Wherever their talents and capabilities are commensurate, handicapped persons should fill these jobs. The organization should be kept small. Offices for Director, staff, conferences and library could be located in a member facility. It would not be a new agency but rather a composite of already active ones brought together and working together in their common cause. They would still have available to them the facilities, capabilities and cooperation of their parent organizations. 49 It is not intended at this point that the organization will do any contracting in its own right. It will operate primarily as a focal point into which all may funnel their knowledge through a data-bank which in turn will disseminated it to all the others, a focal point for clearing their programs to avoid duplication, a central location where all may pool and exchange their experiences, cross-fertilize their ideas and stimulate construc- tive action. (The data-bank should be set up to interface with existing medical and engineering banks. It should search out and include all past and present efforts in all relevant areas. It should generate and include a well-organized and guided census conducted by existing channels established for such work. This is a mandatory exercise of primary importance.) It should serve in an advisory capacity to those seeking and providing funding in both the Government and private sectors, and assist in bringing the two together. After its establish- ment and its having sufficient time to study the issue, upon its recommendation the Congress may consider establishing a special "Handicap Fund" to provide "pump-priming" monies for specific purposes. It will especially address itself to the study and evaluation of NEEDS of the handicapped and will encourage the maximum effort to fulfill them. 50 It will welcome foreign participation and provide foreign governments and organizations with the same sort of guidance that it furnishes domestically. In other words, it will perform in at least all the areas set forth in the FUNCTIONS CHART. Only from the fruits of such an organization can one expect to get a meaningful answer to the question "How can modern science and technology best aid the handicapped?" FUNCTIONS CHART NATIONAL ORGANIZATION FOR, REHABILITATION $ THE HANDICAPPED MANAGEMENT COST ANALYSIS & FUNDING DEVELOPMENT PRODUCTION DISTRIBUTION VOCATIONAL RESEARCH, BASIC & APPLIED DATA- BANK SUSTAINED DISTRIBUTING TRAINING RESEARCH LIASON FOR CENSUS CUSTOMER FUNDING CUSTOMER ALL ITEMS PARTICIPATION T REHABILITATION PARTICIPATION STATE OF THE ART PUBLIC FUNDS PROTOTYPE E SALES ADVISORY PRACTITIONERS ASSISTIVE DEVICES CONSTRUCTION MANUFACTURING SERVICE 5 LIASON FOR DOCTORS PRIVATE FUNDS LIBRARY ENVIRONMENTAL ALL ITEMS MAINTENANCE. $ T MEDICAL STUDENTS REPAIR SERVICE COMBINED SOURCES ARCHITECTURAL MARKET RESEARCH 1 INDUSTRY AIDS PUBLIC ENCOURAGEMENT NEW PRODUCT LOANS PRIVATE Z LIASON FEEDBACK TRAINING CENTERS NEEDS EVALUATION LIASON TRANSPORTATION 4 PROJECT PROJECTIONS CONTRACT ADVISORY CUSTOMER CLEARING HOUSE EDUCATION SHELTERED WORK- PUBLIC SERVICE SHOP LIASON PROJECT MONITORING PRIVATE- PRODUCTION DESIGN HOME JOBS DATA DISSEMINATING PERSONAL STANDARDS VOCATIONAL NATIONAL PROGRAMS COMMUNICATION COUNSELLOR LIASON ORGANIZATIONAL LIASON) SIGNS INDUSTRY INCENTIVES GOVT AGENCIES RADIO TV 3 FED. STATE&LOCAL CHARITIES INDIVIDUAL PERSONAL INCENTIVE CENTER FOUNDATIONS SENSORY is SIGHT ELIMINATION OF CIVIC ORGANIZATIONS JOB DISINCENTIVES HEARING LABOR UNIONS SPEECH SPECIAL PROJECTS INDUSTRY MOTOR REHAB $ HANDICAP'D PROSTHETICS ORTHOTICS INTERNATIONAL OPN'S EMOTIONAL PUBLIC RELATIONS BEHAVORIAL EACH SUBJECT REPRESENTS ONE OR, MORE RECOMMENDATIONS FROM SOCIAL THE HEARINGS OR PANEL MEMBERS VOCATIONAL RECREATIONAL EDUCATIONAL SPECIAL PROJECTS 52 Item 27. RECOMMENDATIONS Recommendation No. 1 AN ENTITY WITH HIGH VISIBILITY AND CREDIBILITY ADEQUATELY FUNDED AND STAFFED MUST BE ESTABLISHED TO CARRY OUT ON-GOING ASSESSMENT OF NEEDS, PLANNING AND EVALUATION OF THE PERFORMANCE OF A NATIONAL EFFORT TO BRING SCIENCE AND TECHNOLOGY TO BENEFIT THE HANDICAPPED. Rationale The body of this Report. (See Introduction, pg. Recommendation No. 2 EMPOWER AND REQUIRE IT TO PERFORM THE TASKS SET FORTH IN THE "FUNCTIONS CHART" MADE PART OF THIS REPORT. Rationale Again the body of this Report.