Sectoral Session E-4 | Thursday, September 8 14:00 - 15:30 |
SPECIAL NEEDS POPULATIONS
THE BLIND AND THE VISUALLY IMPAIRED
Chairperson: | Dr Akira Nakajima | Professor, Department of Ophthalmology, Juntendo University School of Medicine (Japan) |
Co-chairperson: | Capt. H.J.M. Desai | Hon. Secretary General, National Association for the Blind (India) |
SPECIAL NEEDS POPULATIONS
THE BLIND AND THE VISUALLY IMPAIRED
AKIRA NAKAJIMA
Department of Ophthalmology, Juntendo University School of Medicine, Tokyo, Japan
Vision is the most important sense for human life. Impairment of vision, therefore, is a serious handicap for the person, even if it is not fatal to his life. The function of sense organs is to collect information on outside world to transmit it to the brain. Vision handles more than half of the information put into the brain, and other half is through other four sense organs. Complete loss of visual function may be substituted by remaining sense organs, training and adaptation of the life and environment to loss of vision. The aim of rehabilitation of the visually handicapped is to make him enjoy life by full expression of his capacity by various means. There are certain movements or manipulations for which visually handicapped persons is impossible to do, such as driving, minute manipulation by hand, etc. However, visual disability can be overcome to a great extent, as you would hear from the speakers of this session. Utilization of remaining vision is another important means by which visual handicap can be overcome.
Prevention of blindness and visual disability is another important issue. WHO, International Agency for the Prevention of Blindness, and societies for prevention of blindness in many countries of the world organize campaign on prevention of blindness in various parts of the world.
In Japan there are about 300,000 visually impaired among 2,000,000 physically handicapped population. Visual handicap is about 15% in number of physically handicapped population. According to WHO there are about 45,000,000 visually handicapped population among 5,000,000,000 world population. Close to 1% of world population is visually handicapped. More than 90 % of them live in developing countries where medical and social care are insufficient. In affluent countries where less than 20% of world population live, only 0.2% of the population is visually handicapped. As in other medical and rehabilitational problems, the prevention and rehabilitation of blindness are especially serious social concern in developing countries. I hope the session we are going to have this afternoon will be fruitful for the future of prevention and rehabilitation for visually handicapped people in the world.
SPECIAL NEEDS POPULATIONS
THE BLIND AND VISUALLY IMPAIRED
H.J.M.DESAI
Rehabilitation Coordination India, Bombay, India
The United Nations Charter re-affirms "faith in fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women and of nations large and small".
The disabled have, first and foremost, all the fundamental human rights available to all other citizens. They have all needs which all citizens have. In addition they have special needs and are the receipients of specialized services on account of their disability.
Since Dame Nature has denied to the blind its most precious gift - VISION - the State and the Community should go all out to ensure that they are not further denied fundamental human rights and that they are enabled and assisted to ger - like any other citizen - health care, education, employment, civic and other services to live with human dignity and as self-respecting, independent citizens.
It is estimated that the world's blind population might be in the order of 100 million by 2000 A.D. - a frightening thought indeed. This would pose gigantic problems in providing services for prevention and cure, health care, education, vocational training, employment, social security, recreation and integration into the community.
Blind people living in rural areas constitute 80% of the blind population in developing countries. They are scattered throughout millions of isolated and remote villages. For lack of an adequate and well organized Delivery of Services system, it is going to be extremely difficult to ensure the fundamental human rights of the rural disabled and to ensure they all definitely receive the relevant services according to their specific disabiltties.
Magnitude of the problem in the decades ahead
Because of the population explosion, global inflation, everincreasing unemployment, great advances in science and technology, automation, computerization, research in scientific and related fields, less and less labour-intensive industries, regional and civil wars, ever-increasing terrorist activities and and road and other accidents, the problems of the disabled are going to assume gigantic proportions in the decades to follow.
One who plans well ahead gets ahead.
The challenges ahead are indeed formidable.
From this moment on, we have to prepare for the challenges of the year 2000 and beyond. We must not only PLAN from now on, but also see that such plans are IMPLEMENTED according to a PLAN OF ACTION each nation draws up to suit its own needs.
Blind people in rural areas
Education and Resettlement Methodology has been successfully developed to impart education to the blind in existing village schools in rural areas by attaching a Resource/Itinerant Teacher who serves 8 - 10 schools in a cluster of adjoining villages. The only extra cost is the emolument etc. of the Resource Teacher who is normally given a bicycle - who trains the blind in Braille, rural vocations and allied subjects. This is the most economical method, as it eliminates the necessity of constructing exclusive special institutions at exhorbitant cost. Integrated education also promotes social integration from an early age.
Blind people in rural areas have been successfully trained and resettled in agriculture, horticulture, floriculture, forestry, animal husbandry, dairy/poultry farming, pisciculture, in food processing industries, in rabbit, sheep and pig-rearing, running of small village shops, rural crafts and trades and in all allied farm and non-farm activities. They can be contributing members on a family farm, greatly assisting in augmenting the family's income.
Such people are successfully trained by Mobile Training Teams covering a cluster of 10 - 15 villages. Thus, they are trained near to home, and can be assisted in their economic resettlement through the help of village elders, family members, village-level officials and social workers.
Training blind people in their familiar, rural surroundings ensures that there is no psychological or emotional disturbance because of having to move to urban/semi-urban areas where the cost of living is substantially higher, reasonably-priced accommodation is almost impossible to secure, and mobility presents special problems for them.
If the great majority of blind people from rural areas were trained in this way in their local area, then at least 80% of the blind in developing countries would be suitably assisted. This would help to reduce the problems of assisting blind people in urban/semi-urban areas to more manageable proportions.
"I consider that the great national sin is the neglect of the rural masses. If we want to regenerate our nation, we must work for them. "said Swami Vivekananda. How very true even today!
Vocational Training, Rehabilitation and Employment
Intensive individualized and personalized vocational training lays a sound foundation and leads to a total and successful rehabilitation.
My recommendations are as under:
- Modernize all Vocational Training Institutes and services.
- Ensure professional rehabilitation by specialist qualified staff.
- Introduce modern management techniques.
- Substantially upgrade standards of vocational training.
- Develop a multiplicity of skills in the blind.
- Make training work/employment/job oriented.
- Train, and continue to up-grade staff members' training.
- Instill good work habits and work tolerance.
- Ensure full-capacity utilization.
- Use all normal community resources fully.
- Promote employment by all known channels, such as self-employment, rural employment, industrial employment, co-operatives, etc.
- Follow principles of selective placementing - matching job demands with client's abilities.
- Promote on-the-job training programmes and multi-disciplinary assembly lines in large industrial plants.
- Provide vocational guidance, vocational assessment, evaluation and carrer-planning services.
General:
- Involve high-level technicians, technocrats, trade unions, and employers' organizations.
- Conduct research - with the help of international and national level research laboratories and research & development departments of industry and eminent scientists - especially research in developing or adapting aids, appliances, equipment or techniques.
- Organize resource cells in all national and state level organizations which may provide or supervise community-based services.
- Set up Clearing Houses for dissemination of information and knowledge of latest advances.
- Promote regional cooperation, and spare experts for staff training.
- Launch intensive mass-media publicity.
- Create community awareness through the mass-media.
Action: All governments should:-
- Accept full responsibility for meeting all the special needs of the blind and visually-impaired.
- The greater the disability, the greater the state responsibility.
- Formulate a national policy, evolve a national plan of action, organize an effective delivery of services system, and periodically review in their Parliaments, State Legislature, Local Bodies, etc., progress made in the rehabilitation of the disabled.
- Start comprehensive legislation, covering all the special needs for employment and integration of the blind.
- Set up exclusive Commissions or Directorates for the rehabilitation of the Disabled, with specialist representation for each of the major disabilities.
- Grant tax-deductions and other benefits to employers who employ the disabled, including the blind.
- Give top priority to the rehabilitation of the disabled with multiple handicaps, disabled women and children, the disabled in rural areas, and the elderly, infirm disabled. These have been neglected for centuries.
- Formulate comprehensive Social Security schemes; subsidize blind people not able to earn a 100%, living wage; provide pension schemes for the elderly and multiply handicapped; comprehensively cover the disabled in all social and pension schemes.
The State should:-
- reimburse fully the cost of all technical aids and appliances necessary for promoting the total rehabilitation of the blind.
Lyndon B. Johnson said: "We must open the doors of opportunity. But we must also equip our people to walk through those doors."
We must aim at total rehabilitation of the disabled and equip them with a multiplicity of skills, so as to enable them to face the challenges ahead in the decades to come.
The United Nations Universal Declaration of Human Rights has emphasized that EVERYONE HAS A RIGHT TO WORK AND FREE CHOICE OF EMPLOYMENT. Governments must ensure that this right is enjoyed by the disabled before the U.N. Decade of Disabled Persons ends in 1992.
United Nations Declarations
The UN World Programme of Action Concerning Disabled Persons, the I.L.O's Convention and Recommendation Concerning Vocational Rehabilitation and Employment (Disabled Persons) 1983, Declaration of Human Rights of Disabled Persons, and other declarations of the United Nations and its specialized agencies, give excellent guidelines. These must be studied in depth by all concerned in government ministries and by voluntary agencies and implemented. This alone would ensure tremendous all-round progress.
Realistic Approaches
The theme of the World Congress is "Realistic Approaches - Looking Ahead Towards Comprehensive Rehabilitation". A realistic approach would be to make the fullest use of all existing community resources, organize more and more community based programmes and services, and use the existing institutions as Resource Centres from which community based programmes and services can be operated and work to implement the laudable objectives of the U.N. declarations. We must avoid purchasing land, constructing buildings, installing plant and machinery and institutionalizing the blind. This method is prohibitively expensive for developing countries. Our aim should be integrating the disabled with the nondisabled community from the earliest age.
We MUST aim at "Comprehensive or total rehabilitation". Education only or vocational training alone is NOT adequate. The disabled must be fully enabled in accordance with their likes and interests. They must be fully integrated into the community.
I am happy that the World Congress is being held in Japan. No other country in the world has made the tremendous progress Japan has made in high-tec industries, in research, science, technology, electronics and allied fields.
It would be wonderful if a small team of eminent scientists and researchers in Japan could undertake high-level research in eradicating the common causes leading to disabilities, and adapt or evolve simple, inexpensive, technical aids, appliances and equipment which may help in the total rehabilitation of the blind.
Japan may also like to adopt the least developed among the developing countries and assist in developing low-cost, high-yield community based programmes and services for the rehabilitation of the disabled.
The task before us is collosal. The resources are meagre. But nothing is impossible for the man who wills and does.
Mahatma Gandhi said: "Strength does not come from physical capacity. It comes from an indomitable WILL." Let us all work with an indomitable WILL towards the comprehensive rehabilitation of the disabled.
DEVELOPMENT AND FUTURE MOVEMENT BY VISUALLY DISABLED PEOPLE IN JAPAN
MASAHIRO MURATANI
Japan Federation of the Blind, Tokyo, Japan
In August 1948, three years after the war, about 70 blind representatives from various regions throughout Japan gathered together to form an organization in the suburb of Osaka, where Japan Federation of the Blind (JFB) was born. At that time, JFB was the only one nation-wide organized body of the disabled in Japan.
From the beginning of 1949, people who were inspired by the Helen Keller Campaign spread all over Japan, started to form organizations of the disabled in saveral regions and by the end of November of the year, various organizations were made throughout the nation. Together with them , JFB pushed on the government to establish the law for the welfare of the disabled persons including the blind. Hence, in December 1949, Law for the Welfare of the Physically Handicapped was passed through the Diet and came into effect in April 1950. According to the Law, several sanatoriums and vocational rehabilitation agencies for the war-impaired persons set up during the war were put in order, reorganized and opened to all of the disabled persons. The feature of this Law is that it has made a rule of the registration with an identification booklet for the disabled person each. As the result of it, condition and needs of the disabled persons became clearly, which bring to seek more effective ways of service for the disabled.
According to the survey coducted by the Ministry of Health and Welfare in 1987, the number of the disabled persons are as follows.
Physically impaired Visually impaired Hearing and speech impaired Internally disorded |
1,460,000 307,000 354,000 292,000 |
Total | 2,413,000 |
Now, the following are typical activities done by JFB itself and also with other organizations of the disabled after 1950.
In August 1953, we changed some of JFB's system and separated the institutional service section like braille libraries. Now they are working remarkably as member of National Council of the Agencies for the Welfare of the Blind (NCAWB).
In September 1954, JFB joined to the establishment of WCWB (an international organization for the blind at that time) and sent delegates to the First Assembly in Paris, thus, we started to exchange informations among organizations of the world.
In October 1955, with JFB's proposal, the First Asian Conference on Visual Handicap was held in Tokyo. In following year 1956, we established a system called National Committee for the Welfare of the Blind (NCWB) as a liaison body with domestic and overseas organizations. Now, NCWB plays an important role as a Japanese delegate to WBU (international organization of and for the blind).
In 1959, Nationl Pension Law with a contributory system was established, which made them receive some amount of pension. Later in the same year, as a supplemental system, a non-contributory pension system of the disabled started, but difference in amount of pension between these two systems was rather great. Through the continual efforts for equalization by JFB, a new pension system called Basic Disability Pension was established in 1986. According to the new system, grade 1 and grade 2 disabled persons may receive a monthly pension of 64,400 and 523,317yen each. In Japan, the registration of disabled persons is classified under six categories (from grade 1 to 6) according to severeness of disability.
Law Concerning the Promotion of Employment of Physically Handicapped was established and came into effect in June 1960. According to it, the government, governmental and non-governmental organizations, and enterprises should achieve the quota of employment of disabled workers. We are now trying to improve the fact that employment of severely handicapped persons are confronted on difficulties. In 1987, it was ammended to include mentally retarded and mentally handicapped people and developed to Law for Employment, etc. of the Disabled.
In 1969, after lots of deliberation during over 10 months in order to take drastic revision against the Law for the Welfare of the Physically Handicapped,the Law has been ammended completely, and expanded its measures of it.
After establishment of Fundamental Law for Countermeasures Concerning Mentally and Physically Handicapped Persons in 1970, every regulations and administrations began to be carried out according to the Law. We can say it is the pioneering policy of Internationl Year of the Diasbled Persons whcich spread out all over the world.
Japan Federation of the Blind removed the central office from Osaka to Tokyo in January 1964. Since March 1966, when Japan Welfare Center of the Blind was opened at the present place in Tokyo, it was officially approved by the government as the Social Welfare Juridical Person. Thus, JFB became the only one, approved organization which was established by the blind themselves. A new building was built in May 1969 : it deals with consultaion on daily life,law, tax and medical affairs; braille library; braille book printing; cassette-tape recording; development and sales of aid and appliances for the blind.
Local, provincial organizations also have their own centers which play the important role as the base of their activities. There are about 80 braille libraries attached to local centers, and 69 schools for the blind in Japan. We have 5 National rehabilitation training centers for massage, acupuncture and moxibustion, besides 5 public or private centers.
In respone to world-wide International Year of Disabled, we are making efforts to implement a full participation and equality of the disabled persons in Japan. The government has drew up the " Long-term Project of Action concerning Measurements for the Disabled " , refering to World Programme of Action concerning Disabled Persons. The organizations of and for the handicapped work together to implement of this project. JFB also cooperates with the government serving as members of its Advisory Committees.
After the First General Assembly in August 1948, JFB holds a national welfare conference of the blind every year in all parts of the country. This year, JFB celebrated the 40th anniversary of its formation at the birth place of Osaka. About 4,300 blind persons attended. The solidarity of JFB will encourage all the blind and contribute to the development of the welfare in Japan.
THE OCCUPATION OF THE VISUALLY DISABLED IN JAPAN AND ISSUES FOR THE FUTURE
SHINJIRO MATSUI
National Council of the Agencies for the Welfare of the Blind, Tokyo, Japan
The visually disabled in Japan have a particularly unique situation with regard to their work situation: It's a fact that the majority of the visually impaired already employed are involved in the practice of massage, acupuncture and moxibustion. On the other hand, compared with other countries, there are too few work opportunities for those with other skills who wish to pursue work other than the above traditional occupations.
In recent years, there has been a growing recognition of the value of Oriental medicine. As a result, sighted people have advanced vigorously in the field of massage, acupuncture and moxibustion, making blind people demand the protection of their traditional occupations. Therefore, the problems confronting the visually handicapped here are to gain protection of their traditional livelihoods - massage, acupuncture and moxibustion - to expand the range of present employment opportunities, and to develop new occupations appropriate to their abilities.
The Present Work Situation of Visually Disabled People
1.Massage, Acupuncture and Moxibustion Practitioners' Legal protection: These trades have long been "protected occupations" for visually impaired people. This is not only through their own efforts but also the understanding of the community and legal protection which is a fact not to be overlooked. In earlier days they were protected by the Edo Government, the Regulation for Controlling the business of Massage, Acupuncture, Moxibuston and Judo-Reposition Practitioners in 1947, and Law on Japanese Massage (anma), Massage, Acupressure and Moxibustion Practitioners in 1988.
Vocational Education in the School for the Blind: Out of 70 schools for the blind (at present, 1 national, 67 puplic and 2 private) which started in 1984, there are 64 schools that provide vocational training in massage, acupuncture and moxibustion.
Vocational Training Institutions: There are 38 training institutions for massage, acupuncture and moxibustion practitioners for both the sighted and the blind. Of these, those for the blind number 5 national, 1 public and 8 private institutions.
Teacher Training for Visually Handicapped Massage, Acupuncture and Moxibustion Practitioners: Massage, acupuncture and moxibustion teacher training courses in Tsukuba National University Special Teacher Training Institution started in 1910, they have a long history of 80 years. Every year 20 people graduate. The number of teachers of massage, acupuncture and moxibustion in this country is approximately 7,000
Furthermore, National Tsukuba Junior College is to be established in 1991 with massage, acupuncture and moxibustion training courses, as well as an information processing training course for the blind and visualy impaired.
Physiotherapists
The law on Physiotherapists established in 1965 approved the employment of visually impaired people in the practice of physiotherapy in 1966. At present, there are 45 physiotherapy training institutions for both the sighted and the blind. This number includes one national and two public schools for the blind, and there are about 120 physiotherapists with visual handicap among 7,000 physiotherapists.
Other Occupations
The Law for the Welfare of the Physically Handicapped enforced in 1950 and the Law for the Welfare of the Aged in 1963 led to the establishment of national, public and private rehabilitation intitutions, Braille libraries, Braille printing houses, homes for elderly, blind people. Consequently, the way for the visually handicapped to get employment was opened as staff members such as a counselor, caseworker, instructor librarian and the like. This means an expansion of the field of occupations for the blind and visually impaired.
The enactment of the Law for the Physically Handicapped's Employment Promotion in 1959 and its amendment later provided that the legal employment percentage of the handicapped should be 1.9 percent for public agencies, and 1.6 percent for private enterprises, and that the enterprises not reaching the legal employment precentage must pay a specified fine. On the other hand, those enterprises which employ the handicapped are assisted in the purchase of such devices as Optacon and word processor, and modifying of necessary equipment. Furthermore, there is a financial assistance program which enable them to get loans for the necessary funds to purchase special devices and aids.
With regard to the vocational training program for the visually handicapped, the National Vocational Rehabilitation Center has been established by the Ministry of Labor, and visually handicapped clients are trained as computer programmers and telephone operators. Public and private welfare institutions also conduct training of computer programmers, telephone operators, industrial techologists, and audio-typists, in an attempt to develop new occupations for the blind.
Furthermore, there are a number of visually handicapped people employed as national/local government officials, teacher for schools for the blind or regular schools, college instructors, lawyers and researchers. Some enterprises employ massage, acupuncture and moxibustion practitioners to keep their employees healthier. Thus the visually handicapped have advanced to some extent into the field of new occupations, but we cannot say that it is sufficient.
In 1988, the former Mentally and Physically Handicapped's Employment Promotion Asociation was reorganized into the Japan Association for Employment of the Disabled. This Association actively carries out such employment promotion programs as to entrust local vocational centers with guidance service for developing visually handicapped clients' vocational ability, and in providing newly employed blind worker's sighted assistants with three-fourth of his monthly salary to the limits of one and-a-half million yen a year.
Besides this, there are three schools for the blind which have courses on piano-tuning, Japanese traditional music, Western music and information processing. In other words, these schools carry on vocational training other than massage, acupuncture and moxibustion.
As for a welfare-oriented work for the handicapped, there are 9,000 sheltered workshops and 2,000 smaller-scale workshops. However, few of these offer work opportunities to visually impaired people.
Conclusion
"Should the handicapped be helped by 'Employment' or 'Support'?" is a subject of much discussion provoked in OECD (Organization of Economic Cooperation and Development), but it seems to me that both should be balanced. The stability of the handicapped person's situation rests on the economic power and the social security scheme of their country, and so we cannot make hasty conclusions.
According to a national survey conducted by the Ministry of Health and Welfare in 1987, the total employment percentage of all handicapped persons is 29 percent, while that of the visually handicapped is 22.2 percent. This low percentage indicates vividly a weakness in the vocational independence of the visually handicapped in this country. I think that the measures to solve these problems are as follows:
1. The practice of massage, acupuncture and moxibustion has been mostly self-employed so far, but from now on public agencies or enterprises should employ a qualified visually handicapped massage, acupuncture and moxibustion practitioner as a health keeper to increase the health of those who work there and improve their work efficiency. Thus it is necessary to expand the field of occupations for the visually handicapped.
2. The visually handicapped's full participation and equality in society has so far been emphasized, demanding the realization of their rights. However, the examination system for national and local government officials and public school teachers has not yet generally admitted a visually handicapped candidate's taking examination in Braille. Therefore, we have to make all possible efforts to rectify such a situation.
3. Whether a visually handicapped client will be treated by an employment policy under the administration of the Ministry of Labor or work in a sheltered workshop under that of the Ministry of Health and Welfare should be based upon some definite assessment criterion for the work ability of the client. The reality of this country is, however, that those who should work under the administration of Labor perform a welfare-oriented work under that of the Ministry of Health and Welfare. Therefore, an assessment criterion should be set up and clarified, and, based upon this, it is hoped that adequate consideration should be given to secure the employment rights of the visually handicapped.
4. In an employment policy for the severely visually handicapped made by the Third Sector Formula (cooperative program by the government and private enterprise), we cannot see any consideration for the visually handicapped. It is hoped that some countermeasures be taken as early as possible.
5. The independence of the visually handicapped should be implemented not only through their own efforts for self-help but also by utilizing sense-substitute devices for the blind which progressive technology has recently developed. Definitely, these devices will make the visually handicapped's independence much easier.
6. Although there are a large number of low vision individuals, low vision services are ignored and much delayed. Accordingly, measures must be taken for their living and vocational training. Particularly, an active measure to develop occupations for them is an urgent task to be done.
In recent years it is said that the creation of a welfare community beyond a welfare state is to realize the normalization equality of the handicapped. Nevertheless, differential ideas and prejudices against the visually handicapped who have only one sense of vision are still deeply rooted in social consciousness. We may say that a real vocational independence will be to overcome such prejudices.
Taking the opportunity of this international conference, I would like to put forward one proposal. That is to etablish one information center in each of the participating countries. This center will exchange information on newly developed devices for the blind and current vocational trends in each country, and furthermore, accept or adjust those who wish to receive training in other countries, and thereby function as an international network to promote communication and cooperation.
HELEN KELLER INTERNATIONAL'S PROGRAMS OF INTEGRATED COMMUNITY BASED REHABILITATION AND EYE HEALTH CARE
LAWRENCE F. CAMPBELL
Director, Division of Education and Rehabilitation, Helen Keller International, U.S.A.
Since its founding in 1915 by a group of Americans, including Helen Keller, our agency, which today bears her name has been concerned with the needs of blind children and adults, as well as the prevention of blindness in more than eighty countries. While the agencies name has changed, most recently to honor Miss Keller, our founder and guiding spirit for over fifty years...the mission of the agency has always been to repond to the needs of blind individuals, to enhance their quality of life while simultaneously working to prevent avoidable blindness and to restore sight whenever possible.
The modest beginnings of the agency were rooted in Europe following World War I, where the agencies primary concern was the rehabilitation of blinded veterans of the Allied forces. Following the establishment of several rehabilitation facilities in Western Europe, HKI turned its attention to the production of braille books, periodicals and teaching aids to stimulate the development of educational services for blind children and the rehabilitation of blind adults.
For the next forty years HKI devoted an increasing amount of material assistance to the establishment of schools and rehabilitation centers. With Regional offices in Asia, the Middle East and Latin America, along with a Paris office which handled work in Europe and North Africa the work of the agency grew extensively. Much of the credit for this growth is attributable to the tireless work of Miss Keller herself, whom by now through her personal triumphs and writings has become known worldwide. It is hard to calculate the impact Miss Keller had on the awakening consciousness of world leaders to the needs and abilities of blind and other disabled persons. I had the pleasure of meeting Miss Keller several years before her death in 1968 and the impact of that brief encounter was profound. To this day as I travel for HKI promoting the development of programs im many countries I am struck by the continuing impact that her legacy had had on both those that had the privledge of meeting her to the countless millions of school children who have been exposed to the "Story of My Life". Perhaps more than any single person she has helped to shape a brighter future for millions of disable people through her travels, writings and most of all through her example.
When Prime Minister Rajiv Gandhi opened the guadrennial meeting of the International Agency for the Prevention of Blindness in Delhi in 1986 he spoke with profound conviction about programs of service and blindness prevention in India. When he related stories told to him in childhood by his mother and grandfather who knew Helen Keller well, it was not easy to understand why this was more than another politician delivering a welcoming address, but rather a man whose family had been profoundly affected by this remarkable deaf-blind woman.
As the programs of HKI expanded, particularly in the Asia Region, the agency was faced with a persistent challenge. Despite the increasing resources being devoted to the establishment of schools and rehabilitation centers, the problem of meeting the needs of blind people seemed to be growing faster than programs such as ours and those of many other agencies could respond. It was in the late 1960's that HKI took two critical steps to address this challenge.
The first of these was to conceptualize the development of services to blind persons in what at the time was a bold new way. HKI set out in South India with our Indian colleagues to bring services to blind people in their rural villages rather than bringing those same persons to the services which were only offered in urban based centers.
The concept was remarkable for its simplicity...train local village workers to provide basic rehabilitation services to the blind using the natural village setting and village resources as the basic underpinning of the service delivery system. Not only was this approach more appropriate and cost effective, but it most importantly involved the family and the community in the rehabilitation process thus getting at the most critical problem of all...changing public attitudes; something which Miss Keller had many years before written about as the greatest of all problems faced by disabled individuals.
This was the beginning of a now twenty year journey for HKI on the road to establishing community based rehabilitation as a viable philosophy and approach, alongside the already established models of providing education and rehabilitation through center based services. In the early years the going was not easy. Many professionals, comfortable in their center based programs rejected the concept as unworkable and a threat to the quality of services to blind persons. However, as the years passed, the programs, like most innovative initiatives which challenge the professional status quo proved their own worth...not with rhetoric or highly visible physical structures but from the slow and steady product of good labor...blind individuals whose dignity, self-respect and economic contribution to the family and community spoke more loudly and articulately than mere words could express.
Today, community based rehabilitation has come into its own and is widely accepted by agencies worldwide. It would gratify Miss Keller to see the impact that these of CBR programs are having on the lives of thousands of disabled individuals. However the acronyn C-B-R might have had another meaning to Miss Keller.
For the past two weeks I have been in the beautiful Kingdom of Nepal to help initiate HKI's newest CBR program; a cooperative program with the National Association for the Welfare of the Blind. When I spoke to a group of enthusiastic young trainees in the Kabre District two weeks ago I told them that I hope the letters C B and R would take on an additional meaning as they undertook work in their own villages after six weeks of intensive training. In the spirit of what Helen Keller stands for I told them I hoped as they approached their work that:
- C would stand for the compassion they would bring to their work...that
- B would stand for belief in the abilities of the blind individuals they would work with...and that
- R would stand for the respect that they would display for the dignity and rights that each individual has to shape their own personal goals.
I believe that is what Miss Keller would have wanted....I believe it is what we all want for those we work with.
At the same time HKI was making the decision to explore innovative ways of reaching larger numbers of blind individuals through its cooperative service delivery programs; an almost simultaneous decision was made to attack the problem of blindness at its roots...through programs of blindness prevention. With limited resources the agency chose to focus its attention on xerophthalmia (nutritional blindness), the leading cause of avoidable blindness which annually affects almost a half million children in the developing world.
Perhaps the single most important initiative undertaken by HKI was started in the early 1970's with the cooperation and support of the government of the Republic of Indonesia. Suprisingly little was known about xerophthalmia two decades ago. However, the government of Indonesia recognizing that it had a serious problem of childhood blindness undertook, with HKI, a major study of the problem on a national acale. Those of you familiar with Indonesia, a country of 160 plus million, scattered over more than 13,000 islands will recognize the logistical challenges that such a survey presented. However, those of you who know Indonesians know that once they have set their minds at a task, no challenge is insurrmountable. Within three years, with generous support from the United States Agency for International Development, not only did Indonesia have excellent data on the extent of its nutritional blindness problem, but more importantly had the framework for tackling the problem on a number of levels which range from:
- Vitamin A capsule distribution programs to children at greatest risk which has recieved superb support from UNICEF Nutrition education programs integrated into ongoing community development efforts and most recently on trails to
- Fortify MSG which is widely used in cooking pots throughout Asia provides good assurance of a regualar intake of Vitamin A through foods already being prepared and fed to children at risk.
This research has led not only to Vitamin A interventions in Indonesia, but also to ongoing large scale programs in the Philippines and Bangladesh.
One of the most important and unexpected benefits of our work in Indonesia has been the suggested connection that may exist between Vitamin A and infant mortality. Work in Aceh Province has suggested that Vitamin A may reduce infant mortality by up to 30 percent. Of course, further work is needed to establish this connection, but a replication study is about to get underway in Nepal; and if the connection is verified it will of course put Vitamin A interventions on a totally new plane. Certainly some exciting developments here in the Asia Region which we should all follow with great interest.
While HKI is acutely interested in the findings of this ongoing research being conducted by the International Center for Epedemiologic and Preventive Ophthalmology at Johns Hopkins University our basic mandate remains as service delivery and technical assistance which promotes services of prevention, education and rehabilitation.
In recent years HKI has turned its attention to two additional aspects of the global problem of blindness; cataract and the integration of basic eye health care into the primary health care systems of the countries where we work. These directions allow HKI to incorporated lessons learned over the past two decades in both education and rehabilitation outreach and in Vitamin A intervention into broader eye health care schemes.
With generous and farsighted support from Japanes philanthopist Ryoichi Sasakawa HKI has undertaken a major initiative to address the millions of cases of needless cataract blindness. HKI's cataract initiatives have included a range of activities from scientific meetings of world experts to develop a plan of action to the promotion of innovative surgical interventions and the production of low cost spectacles. Very importantly HKI is implementing in the Asia/Pacific Region programs in Fiji, Papua
New Guinea, Sri Lanka, the Philippines, Indonesia and the People's Republic of China which incorporate effective sight restoring surgery into primary eye health care programs. Similar programs are also underway in Tanzania, Morocco and Peru.
Over the past seventy five years HKI has been privledged to work alongside our colleagues in more than eighty nations. While our vertical initiatives in integrated education for blind children, community based rehabilitation and nutruional blindness prevention have along with those of other national and international agencies had a significant impact...it is in the most recent years when the separate threads of this fabric have been woven together int a fabric of integrated eye health care and rehabilitation. This tapestry represents the beginnings to a solution for the worldwide problem of blindness.
Only when we are able to integrate our focused efforts into the ongoing health, social service and community development infrastructures can realistic and sustainable change be expected.
Recently I shared with one of my colleagues in Nepal a vision of what the future might be for the estimated 42 million blind and visually impaired throughout the world. For far too long those of us in the fields of special education and rehabilitation of the blind and visually impaired and those in the field of blindness prevention have been satisfied to carry out our work as adjuncts to the broader systems.
Perhaps some of this was necessary to prove what could be done, to establish a record of accomplishment and to build momentum. But as times change, so must we. Now is the time to demand access to the broader development priorities for our initiatives. So long as we remain separate and apart from the broader community development and economic priorities of the countries within which we work, we are doomed to tinker with the problem rather than to create permanent solultions.
While both domestic and international agencies in the field of blindness have had impact, that impact might be multiplied 100 fold if we were to push for proactive legislation requiring our national development agencies who support so much of the development activity within the countries of Asia, Africa and Latin America to make a formal committment to the needs of disabled persons by insisting that all general development initiatives respond to the question: "How are the needs of that percentage of the population with disabilities being addressed within this project"?
In much the same way as Helen Keller challenged the skeptics who said that it was impossible for a person both deaf and blind from the second year of life to achieve anything...let alone greatness...so to must we look to the future and challenge what now may seem a most elusive goal...not separate special programs for blind and visually impaired person, but full access and equal opportunity to the ongoing development programs and services of the countries where we work.
REHABILITATION OF PATIENTS WITH VISUAL FIELD DEFECTS
H.H.JANZIK
Neurological Rehabilitation Center,Bonn, F.R.G
The object of this investigation is a further attempt to restore visual field portions in patients with homonymous field defects. However, we used an electronic device and a monitor for target presentation instead of a perimeter.
SUBJECTS AND METHODS:
Case reports:
Patient 1: Male, age 49, left occipito-tomporal arteriovenous hemiangioma (operated). Irregular homonymous lower hemiagnopia (see fig. 1). Visual acuity: 1.0 for both eyes. Training was started seven weeks after occurence of brain-damage.
Patient 2: Female, age 21, closed-head-trauma with occipital damage. Large homonymous scotoma in the left lower quadrant. Visual acuity: 1.0 for the right, 0.8 for the left eye. Time since occurence of brain-damage and treatment was 25 weeks.
Patient 3: Male, age 39, cranio-cerebral trauma with left-tomporo-occipital epidural haemetoma. Right-sided homonymous hemianopia. Visual acuity: 1.0 for both eyes. Time between brain damage and the beginning of the training was 25 weeks in this case.
Patient 4: Male, age 45, multi-infarct syndrome. Homonymous loss of lower quadrants in the left hemifield. Visual acuity: 0.9 for both eyes. Visual training was carried out about 10 years after occurence of brain damage.
None of the four patients showed disorders regarding their ocular motility or their fixation ability, nor were any neuropsychological deficits present which could interfere with treatment.
Visual fields were determined using kinetic perimetry before starting and after ending of visual treatment by an external ophthalmologist who wasn't informed about the planned treatment.
In order to control for visual field variations due to e.g. daytime or change in detection criteria in perimetry, visual field mapping was conducted at about the same time of day and by the same examiner.
For perimetric testing a Goldmann Perimeter (model SBP/20) was used. The size of the target was 64 mm2, target luminance was 1.000 asb. The luminance of the background was 31.5 asb. Visual fields were always determined monocularly except in one patient where the visual field before training was mapped binocularly only. Stable eye fixation was ensured by observation through a telescope.
For treatment the monitor on which targets were presented was situated in a slightly darkened, fairly noiseless room. The size of the monitor was 67 cm in diagonal. Targets could be presented along 6 different meridians (0, 45, 135, 180, 225, 315 deg. meridians) so that each quadrant could be sujected to training, and - in addition - the horizontal axis in the left and the right hemifield. Targets could appear at four different positions (10, 20, 30 and 40 deg. eccentricity) along both horizontal and at three different positions (10, 20 and 30 deg. eccentricity) along the other meridians.
A fixation point was permanently present on the screen. The patients were instructed to keep their eyes at the fixation point until they heard an acoustic signal, which coincided with the onset of the target. At this moment they should shift their gaze with one sweep in the direction of the meridian where the target was presented for one second. Patients were always informed about before each session along which meridian targets would be presented but were not informed about the number or positions of the targets.
Target positions were selected at random by an electronic device which controlled also presentation time and intertrial intervals varying between 3 and 7 seconds. During the training sessions the patients were sitting at a distance of 70 cm from the monitor with head posture fixed and neck supported. One training periode consisted of 20 trials; usually 5 such periods were carried out during one training session.
RESULTS:
Patient 1: 15 training sessions(i.e. 1,200 trials) were carried out with this patient. Training was mainly performed along the 180 deg. meridian in both hemifields but also in both lower quadrants. Comparison of perimetric examination before and after training revealed a marked enlargement of visual field below and above the right horizontal meridian as well as in the left lower quadrants. The patient reported a clear improvement of his visual field which he could experience esp. in the professional reeducation carried out in parallel to visual training (see fig. 2, 3).
Patient 2: Training consisted of 14 sessions (900 trials). Training was mainly performed along the 180 deg. meridian in the left hemifield and along the 225 deg. meridian in the left lower quadrants. After training an overall reduction of the size of the scotoma was found (see fig. 4).
Patient 3: Fig. 5 shows the outcome of the training in this case after 14 sessions (900 trials). Training was performed along the right horizontal axis, along the 45 deg. meridian in the right upper quadrant as well as along the 315 deg. meridian in right lower quadrant. Visual field increase was, however, only observed along the right horizontal axis and along the vertical field border in the right upper quadrants.(see fig. 5).
Patient 4: 15 training sessions (i.e. 800 trials) were carried out with this patient. Training was performed along the left horizontal axis and along the left lower quadrant. Perimetric testing after training showed a clear enlargement of the visual field in the region of the left temporal crescent (see fig. 6)
DISCUSSION:
The four cases reported demonstrate clearly that systematic visual treatment can lead to an increase in visual field size this supporting the observations by ZIHL (1, 2). Recovery of visual field seems possible at least in some but not all regions of the visual field indicating that recovery is restricted regarding its degree as well as the field locus. This study revealed further-more that treatment can also be carried out sucessfully using a monitor for presenting the targets instead of using a perimeter.
The fact that an external ophthalmologist, who has not been informed about treatment, has stated that the size of visual field was increased in these patients can be taken as argument against any suspicion that patients and/or therapists expectancy might have "simulated" an increase in field size. Furthermore, the observations that the treatment effect was restricted to particular field regions is in favour of the argument, that instable or eccentric fixation as well as a change detection criterion in perimetric testing cannot explain the observed field enlargement (3). Finally it seems rather unlikely that sontaneous recovery has produced the observed field improvement because spontanneous recovery of visual field from scotoma would be very unlikely after so much time, as it has been elapsed in cases 2 - 4.
Even in case 1 which has been treated rather early after damage occured one would habe to explain why spontaneous recovery was efficient exactly during the period of treatment. The fact that increase in field was strictly related to the training period does not support such a hypothesis.
The visual improvement as realized and reported by the patients was of course first of all related to their improvement in reading after enlargement of the parafoveal field (cases 2 and 3). The two other cases (1 and 4) reported, in contrast, a marked improvement in their "visual state" i.e. regarding their ability to glance over the environment.
Summing up it can be stated that visually field defects can be treated and treatment should therefore be incorporated in neurological/neuropsychological rehabilitation. As we have shown the treatment effect does not depend critically on the use of a perimeter. The above described apparatus consisting of a monitor and an electronic device which generates the stimuli and controls their presentation represents a useful and economical system for this type of treatment.
References
- Zihl J. Recovery of visual functions in patients with cerebral blindness. Effects of specific practice with saccadic localisation. Experimental Brain Research 1981, 44, 159-169.
- Poeppel, E. Brinkmann R, von Cramon D, Singer W. Association and dissociation of visual functions in a case of bilateral occipital lobe infarction. Arch. Psychiatr. Nervenkrh., 1978, 225, 1-21.
- Zihl J., von Cramon D. Visual field recovery from scotoma in patients with postgeniculare damage. A Review of 55 cases. Brain 1985, 108, 335-365.
COMMUNITY BASED REHABILITATION PROGRAMME FOR THE BLIND IN NEPAL
L. N. PRASAD
Chairman, Nepal Association for the Welfare of Blind
Introduction
Nepal is a land locked country sandwiched between two giant nations of the world - China on the North and India on the South. This is mainly a mountainous country and has a population of about 16 million people. Approximately 94% of the people live in rural areas. They are primarily engaged in agriculture. Economically this is one of the least developed countries of the world. About 0.8% of the population is blind or visually handicapped (B.V.H.)
Under the dynamic leadership of His Majesty the King, the country is making rapid all round development. In last one decade, as a result of able leadership and guidance of Her Majesty, the Queen, there has been tremendous progress and expansion in the services provided by the social organizations. All the social organization are affiliated to Social Services National Co-ordination Council (S.S.N.C.C.). This is a non-governmental body and is chaired by Her Majesty, the Queen. There has been rapid progress in the Services for the blind as well.
The Nepal Association for the Welfare of the Blind (N.A.W.B.) has recently been concentrating mainly on the Community Based Rehabilitation (C.B.R.) programme. In Nepal, industry has not developed and job opportunities in offices are limited. Hence, the rehabilitation programmes for the blind which are run in developed countries are not suitable for Nepal.
Area Covered by the Programme
NAWB has started comprehensive community based programmes for the blind in several districts of the country. These are purely rural and agro based programmes. By 1989 in Seven out of seventy five districts of Nepal C.B.R. programmes will be started. It is expected that in about five years approximately 4,000 blind and visually handicapped (B.V.H.) persons will be rehabilitated. Each district of Nepal is divided administratively into 9 Sectors (ILAKAS). The programme is initially started in 2 or 3 sectors of a district and gradually all the sectors of the district are covered.
CBR Programme
1. Co-ordination Committee: After a district is selected and sectors for the programme are decided, a local committee is formed by NAWB. The coordination committee consists of Social Workers, village leaders, school teachers, volunteers, priests, etc. The main responsibility of the committee is to help in: a). selection of supervisors and field workers (who are from the same locality); b). motivation of the BVH persons, their family members and members of the community to participate in the programme; c). development of the training programmes for rehabilitation; d). fund raising and; e). supervision and monitoring.
2. Programme: One supervisor and one office assistant cum accountant for each district and four field workers for each sector (llaka) for the district are selected and comprehensive training for CBR programme for the BVH is given to them for 6 weeks. This is followed by identification of the BVH persons by field workers and preparation of their bio-data. Only incurable BVH persons are taken up for the programme. Others are sent to the nearest eye hospital for treatment.
For CBR programmes BVH persons are divided into four groups: a). preschool children (0-5 years), b). school children (6-17 years), c). Adult (18 - 45 years) and d). Old people (46 years and above).
a. Preschool children - Parents and family members of these children are given training and guidance to train children in daily living skills and to prepare them for going to school.
b. School going children - They are motivated to go to near by school for integrated education with normal children. Braille books and other educational materials are supplied by NAWB. Resource teachers for BVH children from the school are trained in advance. For primary level teachers the training program (Package programme) is for 5 months, but for high school teachers, the training programme is for one year (B. Ed. in Special Education for the blind). Both these programmes are conducted by Tribhuwan University in Katmandu in Collaboration with NAWB.
c. Adults - They are given vocational training for various jobs which are available in the village and in the community. The family back ground, past occupation and aptitude of the blind are taken into consideration for vocational training. Most of the training programmes are home and agro based. They are trained primarily for self-employment. They are given training for making ropes, mats, carpets, furniture, etc. They are also taught to do poultry and raising of buffalo, cows, sheep and goats. They get training for gardening vegetables, fruits, and flowers as well as for growing rice, wheat, lentils, beans, etc.
Some of the BVH persons are encouraged to run small shops of consumer goods in the village and self-employed small types of cottage industries.
If necessary, soft loans or interest free loans are given to some of the needy persons on the recommendation of the local coordination committee. They pay back the loan in installments.
d. Old people - They are mainly given orientation and mobility training so that they may be able to help in the day to day activities of the family and the community in addition to daily self-care.
Orientation and mobility training is one of the most important activities of the CBR programme. All the BVH persons whether child, adult or old are given this training to create self confidence and to make them self-reliant in mobility.
Integrated CBR Programme for Disabled
In addition to the CBR programme for the blind NAWB. has started an integrated CBR programme for all types of disabled persons - BVH, deaf, physically disabled, mentally retarded, leprosy patients and others. This Programme has been started in one big village of about 16,000 population in Katmandu valley. The NAWB is managing the programme in cooperation with social organizations for different types of disability. It is a difficult programme. Financial support for the programme for children has come from UNICEF but for others NAWB is meeting the expenses from its own resources. This is a pilot project, and if this is successful, this type of integrated CBR programme may be started in other areas.
Financial Support
Financial support for the CBR programmes for BVH persons come partly from the government and partly from the internal resources and fund raising programmes of NAWB. But very large percentage of financial support comes from foreign agencies like Christifell Blindenmission (CBM) of West Germany, Helen Keller International (HKI) of New York, World Blind Union (WBU) and South Asia Partnership (SAP) of Canada. In the near future, Tokyo Helen Keller Association (THKA) of Japan in collaboration with Hong Kong Society for Rehabilitation is going to support the programme in one of the districts. Ip Yee Foundation of Hong Kong has donated money for this programme to THKA through Hong Kong Society for Rehabilitation. Late Dr. Ip Yee of Hong Kong had donated valuable collection of antique for the rehabilitation of the disabled.
Problems
The main problems that NAWB is facing in the management of CBR programme for BVH persons are one-shortage of properly trained man power at various levels to run the programme and two-shortage of financial resources.
Nepal is a mountainous country with difficult geographical terrain. The transport and other communication systems are not properly developed. Hence, implementation, supervision and monitoring are difficult. This is a great challenge that NAWB has taken up.
Conclusion:
Nepal Association for the Welfare of the Blind (NAWB) has started community based rehabilitation (CBR) programme for the blind in several districts of the country. In next 5 years approximately 4,000 BVH persons will directly derive benefit from this programme. Due to difficult geographical terrain and lack of trained manpower NAWB as well as donor agencies are facing a big challenge.
Title:
16th World Congress of Rehabilitation International No.11 P.477-P.498
Publisher:
The Organizing Committee of 16th World Congress of Rehabilitation International
Month,Year of Publication:
Jun,1989
To access/retrieve this document:
Japanese Society for Rehabilitation of Persons with Disabilities
1-22-1, Toyama, Shinjuku-ku, Tokyo 162-0052, Japan
Phone:03-5273-0601 Fax:03-5273-1523