WOMEN WITH DISABILITIES: PROJECT REPORTS ON EQUALIZATION OF OPPORTUNITIES

STRATEGIES TO IMPROVE SOCIO-VOCATIONAL INTEGRATION OF DISABLED WOMEN IN JAPAN

-VIEWS OBTAINED FROM THE RESEARCH PROPOSED BY THE INTERNATIONAL LABOR OFFICE-

YOKO KOJIMA
Professor, Japan Women's University, Tokyo, Japan

Having the largest disabled population and dense clustering, third world countries in Asia and the Pacific Region provide a unique environment for disabled women under unique religious and cultural orientation. Historically the status of women was not always high in this region. Disabilities moreover proved to have a double negative affect over the status of the disabled women in Asia. Because of the circumstances of women who were disabled, the International Labor Office (ILO) Regional Office for Asia and the Pacific initiated a research project to identify how the disabled women in Asia cope with their severe social and cultural barriers to pursue their goal of socio-vocational integration under the given cultural circumstances. Six countries: Fiji, India, Japan, Pakistan, the Philippines and Thailand were selected as sample countries for this research project.

Japan is an exception because of its level of industrialization and urbanization, but Japan participated in the research project to indicate the women's situation in the developed part of the Asian and Pacific regions.

1. Profile of Japanese Disabled Women Surveyed

Using a translated form of the unified questionnaire, Japanese disabled women in the following categories were interviewed, and if the interviews were unavailable then they mailed in their form. The categories are physically, visually and auditory disabled, mentally retarded, epileptic and disabled by rheumatoid arthritis. The number of questionnaires completed was 184.

Among the 184, 79.5% were identified as profoundly disabled women according to Japan's nationwide classification scale.

26.6% had higher education, Junior College and over, compared with the rate of women who received higher education of the total woman population in Japan, that is 35.3%, this sample group is not necessarily seen as a lower educated group. Ninetyfour (51%) of those interviewed had occupations. About half of those who do not work are full-time housewives.

The type of work varies: 49% of the employed population were in the open competitive labor market; 25% were self employed, and the majority of this type were blind women who run independent massage clinics alone or with their husband. A small number of the profoundly physically disabled and the mentally retarded women were working in small voluntary workshops for the disabled.

With regard to income, the survey identified two major sources for disabled women. One is social security benefits and the other is earnings and salaries. In Japan only those who are in category I (most severely disabled among the six categories) and II, are entitled to receive non-contributory "Disabled Basic Pension". If a disabled person, and/or the person who has legal responsibility to support the disabled individual, are over a certain standard, the disabled individual will lose eligibility as a pension recipient.

In the sample group, 65% have been receiving pensions. Also, 121 women out of the 184 had some kind of earnings and many of them received both pensions and earnings. The amount of gross labor cost (earnings) varied from ¥2,000-¥3,000 (=US$20) up to about ¥250,000 (=US$2,000) a month per person. The Japanese disabled women surveyed are engaged in various types of work in the professional field. Regardless of the severity of their disability, the physically and visually disabled women tend to achieve professional work such as government officials, administrators, teachers, self-employed, practitioners of massage, technical skill instructors. Mentally handicapped and the multiple disabled tend to work at unskilled trade under the supervision of family or other people. (See Table 1)

Disabled women generally are excited at the thought of marriage, family living, having children and hobbies (the study of music, flower arranging caligraphy, etc.),friendships, working, volunteer service and health maintenance.

On the other hand, disabled women find life ver hard. 94 of the 184 listed 127 hardships in their occupational life. The major complaint being lack of understanding of their disability by superiors and fellow workers. Second is the fear of aggravating their physical condition with their hard working life. Third is frustration caused by their own physical limitation and their aspirations for their life goal or achievement level of work and life.

Table 1 Occupation

2. Recommendations for Practical Action to be Taken to Promote Integration of Disabled Women

The disabled women have made the following ten suggestions to realize their fullest involvement in the socio-vocational society. Among these are suggestions to policy makers, administration, general public and tasks for self renewal.

1. To create a non-discriminatory psychological environment where disabled women are able to be fully integrated.
2. To promote self awareness of disabled women and self advocacy to achieve a reasonable quality of life and self realization.
3. To improve vocational rehabilitation programs and create further employment oppoertunities to fit the potential need of disabled women.
4. To strengthen basic education for healthy personality development and foster sound social functioning abilities.
5. To create a barrier free physical environment including housing for families and single women, business firms, transportation, public facilities, etc. to ensure disabled women have full access to social activities.
6. To increase attendants and/or caregivers qualitatively as well as quantitatively and make the dispatching system effectively centralized for the needs of disabled women.
7. To make use of mass communication media to enlighten the general public for disability integration and to develop social education for homebound disabled.
8. To gather, through effective research, the information needed for life by the disabled and to disseminate same through high technology and all possible communication methods.
9. To call for positive involvement of all levels of government to develop social policies reflecting the needs of disabled women.
10. To establish more community based rehabilitation facilities where early discovery of disabilities and preventive rehabilitation therapy are taught and practised.

3. Recent Social Movement Concerning the Expressed Proposals of the Disabled Women

Observing the trend of social forces in today's Japan, one will find several approaches which will benefit the disabled women directly and indirectly.

1. Methods to Cope with the Deep Rooted Prejudices to the Disadvantaged, Including Disabled Women.
   
   A perpetual public education program to make the general public aware of the human rights of the disabled women, as well as a small group of historically discriminated citizens, is being carried out to foster better understanding of these minority groups. An example program is to be identified in "The Human Right Week Campaign in Kitakushu City". This is part of planned social education activities, such as a series of lectures and symposiums for all citizens to become involved. However, more important than such a local government initiated educational program can be a demonstration of the life and work of the disabled women in the everyday world. The homemaking, child rearing and work performance of disabled women, known by neighbors, can have a real impact and make ordinary people in the community aware of their needs and abilities.
   
2. Taking Action for the Self Advocacy of Disabled Women
   
   Promoting self help activities is essential in order order to meet the women's need to acquire: the ability to live independently; educational opportunity for sound personality developement; qualitative and quantitative development of attendants; and acquiring useful research information. After the International Year of Disabled Persons, leading Japanese disabled women who had experienced the American way of independent living programs, through the sponsorship of the Mr. Donut Scholarship Program, and their colleagues, worked to establish a women's corps of Disabled Peoples International (DPI) to acquire information of the international movement for self help activities. Some disabled women established a private association to recruit, train and dispatch professional attendants to families of the disabled who need home assistance. Some women established a group home for the disabled and others for many years organized various self help associations to represent the disabled and to influence the political, administrative and academic fields to develop policies
   
   and services for the disabled. Thus women's power gradually turned into formal self help organizations and gained social recognition even though the financial support systems in Japan were not yet developed.
   
3. Recent Development of Support System to Rehabilitation NGO and Informal Self Help Activities
   
   Today, the life expectancy of the Japanese is longer and Japan has a typical aging society. The elderly and the disabled include severely disabled women and there is much need for home care and attendant service in ordinary family life. In that service market some disabled women have made attendant sercices their occupation.
   To promote the establishment and management of non-governmental service agencies so that some disabled women are able to be careworkers efficiently, the Tokyo Metropolitan Government provided a fund of twenty billion yen to the Tokyo Community Welfare Promotion Foundation, and let the Foundation use the interest of the fund to support such non-governmental care agencies.
   The Tokyo Metropolitan Government have established such pilot funds as an incentive to set up home care, attendant, meal service, transportation service, etc. in the community and to influence the National Government and other municipalities.
   
4. Development of Job Opportunities for the Disabled Women
   
   From April 1988, the professional qualification of social workers has been controlled by the National Government based on the "Social Worker's and Care Worker's Law". To meet a national standard and pass the examination is not an easy task for disabled women, but once they obtain their license for human service professions their status will be soundly protected by law.
   Many disabled women work in private companies, their employers usually have strong opinions and criticisms of them but they still employ the greatest number of disabled women and treat them as a normal work force. Disabled women in this survey expressed their occupational preference and like to choose jobs through a selective employment method rather than be placed in generic production lines with the general workers.
   Disabled women workers with a higher educational background tend to establish a unique work position and maintain the post for a long period. They find jobs in areas where they do not have to compete with the non-disabled, such as language, therapy, music and managerial skills.
   
5. Growing Demand to the Community Based Rehabilitation Agencies and Barrier Free City Environment
   
   Community based rehabilitation (CBR) is not the only model for developing countries. In the developed part of the world an informal service network such as families and neighbors tend to lose the primary help functions. In an urban area each independent citizen needs to be treated equally by the community based facilities.
   Disabled women need to have a multi-functional, accessible rehabilitation center in which they can enjoy the opportunity for recreation, sports, study, child care, etc.
   As do normal citizens, the disabled women like to enjoy community living. Going out to shop, for recreation as well as to work. The community environment is for everybody.
   The Japanese Government has a policy providing grants to municipalities to encourage them to make changes from the old environment to barrier free cities. Approved municipalities are called "Welfare Cities for the Disabled". The City Council for maintaining the function of the "Welfare Cities" should invite
   more disabled women delegates to their policy making
   processes.

In Japan, as this research discussed, disabled women still
have many unsolved problems in achieving the social goal of
"participation and equality". But in Japan, disabled women
are not always oppressed people either. In spite of the
hypothesis of ILO, women in Japan, in both rural and urban
areas, rather equally enjoy the social life with little
discrepancy in social status.

This survey found that the Japanese disabled women showed
their potential abilities to live normally. Their positive
opinions for future policies can be served as policy
guidelines. It is hoped that the recommendations drawn from
the Japanese disabled women are to be shared with the
disabled women in Asia and the world through the women's
forum for self realization.

References

1. Kojima Y. Analytic Report on Socio-Vocational Integration of Disabled Women in Japan: A National Research Project for the ILO. Office of Social Rehabilitation Research, March 1988 153 pp
2. Kojima Y. "A Study of Social Integration of Disabled Women", Welfare for Persons with Disabilities Vol. 8, No. 2. Tokyo: Japanese Society for Rehabilitation of the Disabled, February 1988. p.2-9.

Table 11 Occupation

DISABLED WOMEN AND THE PHILOSOPHY OF OCCUPATIONAL REHABILITATION

MUNEERA ALQATAMI
Kuwait Society for the Handicapped, Hawalli, Kuwait

INTRODUCTION

In 1981, the World Health Organization ( W.H.O. ) conducted a comprehensive statistical survey embracing all its member states to demonstrate the size of world disability problem. The survey, which was conducted on the occasion of International Year of Disabled Persons organized by the U.N., confirmed that there are 500 million people with disabilities forming about 10 % of world total population. After 7 years had elapsed no doubt that this estimated percentage had increased especially in the third world countries due to bad conditions such as famine and malnlitrition widespread in these regions on the one hand and the calamities of wars creating many infirmities on the other.

If we statistically accept that the estimated figure of persons with disabilities in the world is 10 %, the figure will differ from one country to another because of the variance of proper resources and constraints put on the factors contributing directly or indirectly to the total amount of disability.

There are factors that decreases the possibilities of disability such as:

• promotion of health services.
• enhancing a higher educational level of the people.
• providing sufficient food suply for the society.
• fulfillment and observance of the provisions of health, safety and security in work sites, houses, and public places and roads.

The availability of these factors in the world's rich, stable, industrial countries and the lack of it in the third world countries, including the Arab countries, is in fact the main cause of the evident increase in the percentage of the disabled persons in the third world compared to the percentage in the developed industrial countries.

DISABLED WOMEN IN THE ARAB REGION

Woman in the Arab region suffers from problems related to most aspects of life. These problems are involved with social factors that forms in its nature tremendous pressures because she is a woman. Most disabled Arab women are confined in their homes and rarely go outdoors for which one main cause is the wide-spreading unemployment. The scarcity of centres for the development and rehabilitation of the disabled persons, the absence of suitable transportation vehicles for them, inadequate educational facilities and methods for disabled young women in addtion to the way the society views them. This view that is predominant is colored by pity and fear originating from superstitious concepts about disabilities and disabled persons. These concepts have descended to us from past ages and resulted in serious feelings of embarrassment and shame and adheres to the disabled person and her family whenever appearing in the society.

In my opinion - and I think there are many other parties interested in the field of disablility and disabled persons who join me in this concept - we should work with all aspects: health, psychological, social, economical and environmental aspects in an integrative co-ordinated methodology in the field of disability so as to be able to reach what is called - "the rehabilitation of the disabled". This means, basically, to create a type of relation and interaction between and disabled woman and her society in such a way that could make her aware of her-self and her humanness. Speaking of the concept of rehabilitation, I will present the philosophy of occupational preparation and training in the process of the rehabilitation of women.

THE PHILOSOPHY OF TRAINING

It is for granted that training aims at the access of disabled women to a good level of education and skill in the field of occupation and the capability of adaptation to new changes occuring in her work. So, it is essential that the training programmes include whatever enables and helps her to arm herself with ideological skills and not limiting herself to the traditional concept of training which is acquisition of handicraft skills. It is known to all that when we speak of training disabled women, what occurs to us most of the time is the classical image of a group of women sitting round a table in a workshop and doing somesort of needlework or anything similar in an endless monotonous repetitive manner. This image should be replaced in the mind of whoever speaks of the process of training disabled women specially the young generations who will comprise the working cadre in this field.

We are experiencing a changing life. There are many rapid developments taking place in our societies through which the features of these societies are changing gradully and changing with it is the concept of the humanbeing of himself and his role in the life and the society. So, in planning for the training needs of disabled women, we should note these developments specially in the field of new technology. It is for the disabled person rehabilitation institutions, and the productive skills related to them to proceed side by side, and by all means, with scientific technical advancement and to be engaged in studying whatever is current and changeable in the labor market through developing its view to the matters and their policies and the contents of the theoretical and practical training programms.

It worthy to say that in 1986 the International Labour Conference in 72nd session approved a resolution concerning providing the opportunity for the employees to get their chance in education. Now it is the role of the organization to participate in achieving this goal starting from the principle of equalization of opportunities aiming at what education may present in developing training facilities for the workers. Adopting this principle in the field of training disabled women would assist in developing her capabilities and achieving the greatest use of her in the context of the training process and promoting her level of awareness to help her be able to more effectively participate in the social life and the efforts exerted to improve the conditions in this life.
Education influences the way she would confront her medical and psychological problems related to disability and provide her with more selfconfidence. Yet, there is another principle that we should take note of in the field of training. That is to say, we should assist the development of disabled women's capability for better self-perception by realizing her capabilities and trends and hence improving their ability to take the right decisions concerning her life. Future training programs should not pose the impression that women have a passive role, that is as trainees performing their work without expressing any opinion or decision. On the contrary it should be a summary of the decisions of these women chosen according to whatever they find proper and consistance with their abilities and talents.

The ability to reach a decision related to the educational and occupational future is considered a basis of achieving the maturity of the individual and her social adjustment in addition to achieving her ability to respond and behave. Rehabilitation does not aim at assisting the disabled person through working on his behalf, but it aims finally at assisting the disabled in helping herself.

Now it is time to speak of the role of governmental and private sectors in the training field. Government and the private sectors should participate effectively in this field because rehabilitation institutes and the disabled person themselves and their future are related to a great extent to the degree the efforts are closely connected on the part of the governmental authorities on the one hand and the private sector on the other. To provide whatever is necessary either financial support or legal legislation, and to develop social awareness and purify it from incorrect concepts and superstitious blemishes about disabilities and their causes and accompaning phenomena.

This requires consistency of the efforts and determination of goals and policies and programming the work ... In my opinion what helps greatly in acheiving this aim is the creation of a joint high authority for disability rehabilitation in each country of the Arab region where government interests and respective private sectors are represented in such a way that this authority would be entitled to elaborate the policy of the country concerning the rehabilitation of the disabled. Time is necessary for this purpose in the light of the findings of the surveys, studies and researches conducted by the various authorities to specify the size of the problem, the causes, and the figures consisting each category of the disability categories and hence to highlight to protective aspects and notify them when besigning the priorities in the excutive and financial plans. It is regretful that till this date there are no accurate statistics, studies, minute investigative and pursuitive research that aids in shedding light on the problems encountering the disabled person in an intensive way and identifying each according to the type of disability and the possible causes.

The work of governmental, private authorities and individuals would not achieve an effective, positive effect without legislation. The process of legislation in general should be based on legislation including the disabled persons right to education, work, equal opportunities, comprising the employers, budget and financial resources insurance, so that disabled persons projects have fixed items in the budgets. As for disabled women, she should be granted her rights by legislation as regards the above mentioned aspects, but most important legislation should secure her rights with consideration to her as being a woman in the cases of personal stature and other conditions. And to ensure her equality to men in the matters concerning her work or the opportunity to be educated and trained.

WOMEN AND DISABILITY IN AUSTRALIA-POST 1981

EDITH HALL
ACROD, Canberra, Australia

The International Year of Disabled Persons (IYDP) introduced disability to the community at large. It took a few more years for the community generally to recognise issues of particular importance to women with disabilities.

ACROD is the National lobby group of voluntary organisations and associations in the disability field in Australia. ACROD has over 300 member organisations ranging from the smallest self-help groups to the largest service agencies. ACROD also has some 300 individual members.

In 1984, ACROD held a Consultation on Aids and Appliances for Women with Disabilities. It was the first time a group of women with disabilities had been bought together to discuss issues of particular relevance to women. Discussions over the two days provided a basis for further work in the area and heralded the beginning of change for many Australian women with disabilities.

Three issues of major concern were identified:

• Incontinence
• Menstruation
• sexuality.

ACROD has taken action on all three issues.

Incontinence

In association with the Australian Council on the Ageing, ACROD has lobbied for the better management of incontinence for all Australians, including women with disabilities. As a member of the National Task Force on Incontinence, ACROD has contributed to increased public awareness of incontinence as a national health issue with an emphasis on "the normality" of incontinence and the fact that people who are incontinent can be significantly helped - a cure may not always be possible but better management is. In October 1987, the Task Force organised the First National Conference on Incontinence and early in 1988, the Commonwealth Government provided funding for three years to assist in the establishment of a National Continence Organisation, which will ensure that incontinence and its prevention and maintenance continues as a major health issues.

Of importance to people with disabilities, particularly women, is the cost to the individual of aids to manage incontinence. ACROD is continuing to work towards lowering of these costs.

Menstruation

Management of menstruation for women with disabilities has created problems. In an effort to identify these problems and possible solutions ACROD conducted a survey of some 500 women with disabilities. Analysis of data indicated that overall, the women participating in the survey considered menstruation to be a natural part of their lives. The ease of management of menstruation was affected most by the type and severity of individual disabilities.

Heavy bleeding, incontinence, lack of availability of suitable attendant care and suitable facilities to change protection and skin conditions created the most difficult problems.

Although no questions directly addressed the adequacy and extent of the information available to participants on menstruation, an examination of the individual comments made in answer to many questions indicated that:

• for many women no information was received
• a degree of embarrasement and reluctance by both women with disabilities and their carers to seek or provide additional information which may have assisted
• lack of information and counselling on medical approaches, e.g. hormone therapy, hysterectomy, to managing menstruation.

Sexuality

In 1986 as its response to the United Nations end of Decade Conference in Nairobi, the Australian Government announced plans to develop a National Agenda for Women towards the Year 2000.

With funding from the Australian Government, ACROD convened. three seminars to discuss the proposed National Agenda with women with disabilities. The seminars were held in two State Capital cities, Perth (WA) and Hobart (TAS) and Wagga, a large town in rural NSW. Many of the issues raised were later included in the National Agenda for Women.

A major issue highlighted again during these seminars was sexuality and women with disabilities. In response, a two day Conference "Sexuality and Women with Disabilities" was held by ACROD in Melbourne in June 1987. Discussions covered coming to terms with sexuality, rights as a sexual person, establishing, working within and maintaining relationships, sexual values and sexual options and sexuality for women in residential and institutional care.

One issue identified by participants at the Conference was the desire to be able to discuss sexuality in smaller groups. To facilitate this, ACROD has received funds for the development and trialling of an Information Kit to assist women with disabilities, particularly those living in isolated areas, to discuss sexuality with their peers in small group settings. A workshop, to trial the Kit, will be held in Alice Springs in November 1988.

Another important issue to emerge in Australia has been the necessity for many Australian women to take on a caring role.

ACROD's Forum for Carers held in Adelaide, SA, in June 1988 discussed issues faced by carers of children and adults with disabilities and faced by women with disabilities caring for families. Recommendations made by participants included the need for government to consult more openly with carers and to recognise the depth of expertise available. Other recommendations were that government should recognise the special needs of people from ethnic communities and that there was a need for carers to be provided with accurate information regarding rights and choices.

The current move towards de-institutionalisation is strongly supported in Australia, there is concern that women who are traditionally the main care providers may be disadvantaged unless support services in the community are rapidly up-graded. The Commonwealth Government's Home and Community Care Program (HACC) has not as yet fulfilled expectations for people with disabilities or their carers. The HACC program, which is administered at State level is currently undergoing a major review. ACROD continues to lobby for more effective community services.

Women's Health Policy

Australian women have been asked to consider and respond to a draft policy on Women's Health. ACROD believes that the health of women with disabilities should be a part of the broad national policy for all women keeping in mind that women with disabilities may need special consideration in some instances.

So far, the National Policy looks promising, taking a holistic view regarding women's health and favouring an intersectoral approach through co-operation with other Government Departments.

Social Security Review

The Commonwealth Department of Social Security has recently produced a paper on disability issues titled 'Social Security Review Issues Paper No.5 - Towards Enabling Policies: Income Support for People with Disabilities" as part of its overall Social Security Review.

The paper strongly endorses the introduction of a non-income tested and non-taxable disability allowance.

It has been recommended that the disability allowance be available to people with disabilities in community activities, including household work, child care or care for relatives. The first time in Australia that income support has been recommended for people not in paid employment or vocational training.

REHABILITATION SERVICE UTILIZATION MODELS

CHANGES IN THE OPPORTUNITY STRUCTURE FOR DISABLED WOMEN

B.M. ALTMANandR.T. SMITH
Sociology Department, University of Maryland, U.S.A.

There is extensive research into rehabilitation and its consequences as can be observed in many publications, both clinical and social. Illustrative of this efforts is Bolton's recent publication, Handbook of Measurement and Evaluation in Rehabilitation, which focuses on the effectiveness and efficiency of rehabilitative functions. The conceptualization and measurement of rehabilitation outcomes is also the topic of another book by Fuhrer which attempts to address the "core of values, attitudes, concepts and practices that run throughout the different areas of rehabilitation." In this book, emphasis is given to trends in specialization found in the rehabilitation field, with a focus on identifying elements in these diverse approaches that in turn may be used as a common ground for problem resolution.

In this diverse approach to rehabilitating disabled persons, two thematic approaches appear to be dominant. Rehabilitation currently takes place in two very different forms or models of orientation. The medical model is that form of rehabilitation that takes place within the medical system and is commonly called medical rehabilitation. It includes a number of activities directed toward restoring bodily function to as near the original state as possible and employs many medical professionals in the process. Vocational rehabilitation is the other form of rehabilitation currently in use and it focuses on the reintegration of the individual into the roles available to him/her in the community including, but not limited to the work role. Vocational rehabilitation is seen as a more psychosocial form of rehabilitation and takes place in facilities or organizations outside of the medical system, sometimes in government agencies, but also in private organizations which focus on counseling, job training, and other methods of adapting the individual to function in the community. Unfortunately, not all individuals with impairments which lead to disabilities in role performance have access to rehabilitation of either type, or in combination. Neither is it completely clear that this lack of experience or availability of rehabilitation is detrimental to an individual with a disability in the general case.

This study examines factors that influence the availability of rehabilitation for an individual in the United States and then examines the impact of the two types of rehabilitation service models on a specific outcome measure, ability to return to work.

Issues to be Examined

When considering the place of rehabilitation in the aggregate picture, the research questions addressed are similar to those asked in the individual case, but because of the breadth of focus, they are also different. Two very basic questions to be examined here reflect that similarity and difference.

The first question, "Who receives rehabilitation?", is not a question that is ordinarily asked in rehabilitation research. It is assumed that the clients with impairments appropriate to the treatment facilities will be accepted for the program. The concern is not with the presence of clients with impairments but with process and outcome. However, as the epidemiological data show, only approximately 25% of those indicating some level of disability receive any rehabilitation. This clearly raises the question: "What combination of characteristics and circumstances influence whether or not an individual takes part in a rehabilitation program?"

Noting that there are actually two distinct models of rehabilitation, medical and psychosocial , would extend the question of access as presented here. Not only is there the issue of who receives rehabilitation and who does not, but there is a further dimension to that question which necessitates a corollary, "What kind of rehabilitation do they receive?"

The second question is the one more commonly asked in the literature: "What is the outcome of the rehabilitation process?" Functional assessment easures of clients have become important, common tools for evaluation of program effectiveness and efficiency. However, the focus of these functional assessment questions in the majority of instances is the individual client in the rehabilitation organization. The results of this focus are used to compare the client's performance at two points in time or to compare one client to another. This question as asked in this paper focuses on the group, so that we examine the outcome of the rehabilitation process for the group who have experienced one or the other of the forms of rehabilitation. In this way two more general comparisons can be made: one between the two types of rehabilitation, medical and psychosocial, and the second between those who receive rehabilitation and those who do not.

Focus of This Paper

The focus of this paper is the opportunity structure for rehabilitation and outcomes of rehabilitation for women in the United States. We ask the two essential questions: Who receives rehabilitation and what is the outcome of the rehabilitation process? Focusing on women in the rehabilitation system is an xcellent way to maintain a sociology of rehabilitation perspective. As a review of the history of the rehabilitation movement will show, the major orientation of the rehabilitation system was and still is directed toward the needs of disabled men. Although the vocational rehabilitation system, the veterans administration and other rehabilitation programs in the U.S. provide services to women as well as men, the major impetus to the rehabilitation movement came after World Wars I and II in response to the needs of men, who were casualties of the war. Even in the expansion of the Vocational Rehabilitation Act in 1954 and the Social Security Amendments in 1956, the focus of rehabilitation programs was on the provision of services to heads of household, most frequently men, with the express purpose of reducing the need for compensation and improving the ability of families to stay together. Focusing on women in such a system directs attention away from the strengths of the system to examine the possible weaknesses.

A second reason to focus on women is evident from recent data on the prevalence of disability in the United States. Data from the National Health Interview Survey for 1983 - 1985 indicate that women are more likely to report moderate to severe disability, particularly past the age of 45. The most common cause of disability being arthritis, also points up the changes in the disabled population today from that of the disabled population when the first large public programs were enacted. Although recent legislation has sought to expand the opportunity structure in the area of rehabilitation, the programs are add-ons or expansions of the initial institutionalized orientation to the rehabilitation process. The focus on women helps to examine the effectiveness of the recent policy changes which should impact on women's experience with the rehabilitation system.

Data Analysis

At the present time, very few national data sets are available that include information on the use of rehabilitation facilities, therefore we were required to use the most recent aggregate data available. This study uses as its source of information two Social Security surveys collected from a national sample in 1972 and 1978. The first was collected from a national sample in the 1970 Census. There were a total of 17,997 respondents of whom 12,900 indicated some form of disability. The second data set was drawn from a national sample of noninstitutionalized civilian adults for the use of the National Center for Health Statistics and combined with a sample drawn from Social Security records. A total of 9,900 completed the interviews of which 5,700 indicated they were disabled. The age range of both samples is from 18 to 64. For the purposes of this study, in order to avoid the effects of multiple types of conditions, a subsample was selected using three types of illness problems, life threatening, degenerative and communication disorders. Heart disease was selected as representative of a life threatening condition, arthritis as degenerative condition and deafness or blindness were representative of communication disorders. The selected samples were 2,623 and 1,371, respectively.

As a first step, sociodemographic and condition variables such as age, sex, education, race, type of condition and seriousness, were used to examine whether an individual received either form of rehabilitation. The results of the analysis indicated that while education, condition and age were factors influencing receipt of rehabilitation, sex was an important factor as well. The combination of age and sex were particularly important indicators of who received rehabilitation and what type of rehabilitation was received. Women were less likely to receive rehabilitation than men below the age of 45 and above the age of 45 they were much more likely to receive medical rehabilitation and not psychosocial rehabilitation. The results were not too different for the two points in time, although very important political and administrative changes had taken place between the two surveys in the form of the 1973 Rehabilitation Act and the 1975 Education Act. Both expanded the access to rehabilitation services by the disabled population, but the effect was not yet apparent in the analysis of the data collected after their passage.

In the second portion of the analysis the effects of the two different types of rehabilitation were examined for one outcome measure, whether or not the individual was able to return to some work role. In the earlier data set, when controlling for sociodemographic characteristics and type of condition, indications were that neither the medical model of rehabilitation nor the psychosocial model were effective in returning the individual to the work role. In both instances, rehabilitation was associated with not working. However, after the call for change in policy, prescribed by the laws mentioned, the analysis indicated different outcomes for the medical and psychosocial models of rehabilitation for women. While the medical model still was associated with not resuming a workrole, the psychosocial model showed movement in the other direction, though not at a significant level. The results suggest a trend toward effectiveness of the psychosocial model that can only be verified by data collected more recently.

An interesting aspect of the analysis shows that women are more likely to experience the effectiveness of the psychosocial model than men, although they are less likely to receive this type of rehabilitation. In addition, it is not clear exactly where the impact of socio-structural change of the two landmark laws are most effective, in the attitudes of clients toward then rehabilitation, in rehabilitation workers toward their clients, or in employers toward rehabilitated workers. However, the observation of differences in outcome after the enactment of the legislation would lead one to consider the possible contextual effect as an important one for consideration in examining rehabilitation effectiveness in the aggregate picture.

Discussion

There are two striking results from the analysis presented here. One indicates that receipt of rehabilitation is greatly influenced by sociodemographic factors especially gender. The second result of note is that neigher form of rehabilitation studied is associated with a positive outcome, in this case ability to work, for the individual who has one of the conditions examined in this study.

Receipt of rehabilitation is shown to be significantly associated with age, gender and condition at both points in time. However education, which was an important factor in 1972, is no longer significantly associated with receipt of rehabilitation in 1978. Viewed in light of the policy changes that took place between 1972 and 1978 it is clear that either the policy change was not effective enough to improve circumstances for women and the older population or the amount of time elapsed was not long enough to effect all the changes called for in the 1973 legislation.

While the change in impact of education on receipt of rehabilitation is a striking change in the direction of improvements in receipt of rehabilitation, it is not clear that the samples are totally comparable in this area. The 1978 sample does show a somewhat large difference from the 1972 data in the distribution of individuals in the various levels of education, particularly those who have completed eight years or less of schooling. This may be a factor in the results that are being obtained.

Examining the impact of the other sociodemographic characteristics on gender differences it is not clear that there is much improvement between the two points in time. While race is not a factor in general, the analysis shows that there are racial differences that influence receipt of rehabilitation for women. White women, in 1972 and 1978, are significantly less likely to receive rehabilitation than white men. Black men and women on the other hand do not show a significant difference in receipt of rehabilitation and this has not changed over time. One of the factors that would possibly explain this is involvement in the work force prior to disability which can influence receipt of rehabilitation. The proportion of black women in the labor force at the times of these surveys usually exceeded the proportion of white women.

It appears that age is not a factor influencing women's receipt of rehabilitation in 1972 where women received less rehabilitation than men at any age, but becomes an issue in 1978. Older women receive about the same amount of rehabilitation as older men in 1978 thus indicating an improvement in their situation, but younger women appear to lose ground. The cause of this is not apparent from this analysis but should be a point of concern and further study.

Looking at the second set of analyses, which examined impact of rehabilitation on the ability to work, the initial reaction may be to assume that rehabilitation fails to accomplish its goals of improving the individuals ability to function in the community. However, it is dangerous to make such a judgement without much more information about the contextual influence impacting on the individual once he/she completes the rehabilitation process. It is not clear whether the results shown here are a failure of eigher form of rehabilitation or a failure of society to integrate the rehabilitated individual into the mainstream of everyday activities. It is simpler to use an individual explanation, to blame the victim, rather than to look at the larger context or structure as it impacts on that individual. Furthermore, it is not evident that individuals who are completing rehabilitation programs are getting a chance to decide to work or not to work, or that the effects of labor markets, economic changes or transfer payment policy are precluding their choices.

Since older age and less education are also significantly related to the outcome variable, ability to work, in this analysis, it may be that rehabilitation cannot effectively compensate for these important structural demographic factors, especially the medical model of rehabilitation. This is an important avenue for further investigation.

A final comment focuses on the second stage of the analysis of the 1978 data that shows, for women at least, that the psychosocial model is tending to work in the desired direction although not at a significant level. Women are less likely to receive this form of rehabilitation, but it appears that the effects are beginning to be more positive for women.

Though the mechanisms involved here are not evident, sociostructural changes may be impacting on receipt of rehabilitation, in some ways more positively, especially if the effects of education have actually been modified. Also they may be effecting movement in a positive direction for women who receive psychosocial rehabilitation. It is too soon to tell and further examination of more recent aggregate data is necessary to see if the trends noted here are continuing. Unfortunately aggregate data that includes information on rehabilitation is not as readily available as one might expect.

WOMEN ASSISTING DISABLED PERSONS

TERESA SELLI SERRA
President, Italian Spastic Society, RI National Secretary, Italy

In the past 10 - 15 years the subject of "Women and Disability", which was first pointed out by Rehabilitation International in a resolution of 1975, has gained more and more interest.

UN, ILO, EEC, on one side; RI, ICPS and other international NGO on the other side, have taken various initiatives at this regard with particular reference to disabled women.

I will this time focus the attention on women assisting disabled persons which was the second aspect of the impact that disability may have on women pointed out by RI resolution in 1975.

It was stated in that resolution: "In a family with a disabled child or other disabled family members, the special functions necessary for the care, education and social adjustment of disabled persons usually, in the absence of adequate necessary services, are performed by the woman or women in the household, thus limiting in unequal manner the rights and opportunities of women concerned."

When we say that the 10% of the world population in disabled - which means about 500 million disabled persons - we often forget that there are at least 500 million women in the world who are involved in one way or another in the care of their disabled family members.

Society, in fact, has always taken for granted that the care of infants, sick people, elderly and disabled persons is a responsibility of the family, but in practice such responsibility, especially in the modern urban nuclear family relies mostly on women.

I will not discuss however, the claims of feminist movements concerning the right to equal opportunities for all women, including the right to work, to social services, and so on, because I hope we all agree on these issues.

What I want to srress here is the importance of offering a real free choice to both the disabled person needing personal assistance and the woman of the family who is expected to assist the disabled person.

In fact, the type of relationship existing between disabled persons who need personal assistance and their assistants is of a very delicate nature. If the woman assisting a disabled person does not do it as a free choice, or if the disabled person is not freely accepting her service, the relationship between these two partners (obliged to live together) can have a very negative influence on both of them.

Therefore, it is essential for the well being and mental health of both partners that a real choice be at the base of their partnership.

But in order to choose freely, there must be a variety of options and society should be responsible for offering different types of solutions which best suits individual needs.

Unfortunately, until now, the only option offered in many countries is the service given by women in the family, in some countries legislation even obliges families to take care of their dependent members. In some other countries, legislation gives incentives or pays housewives for the personal assistance they provide - but I don't think this is the right approach to the problem. There must be a variety of solutions.

Unfortunately however, society very rarely offer the necessary different options and, even where new approaches and alternative solutions have been offered, there is always the danger in many countries that the recurrent economic crisis may bring back to family responsibility the task of offering personal assistance service to disabled persons who need it.

I have followed with great interest in the past few years, the growth of the Independent Living Movement because their claims seem to go in this same direction, of course from the perspective of disabled persons who want to decide about their own life and want to be responsible for their own personal assistance service.

They consider personal assistance as the key to independent living and they define independent living as the ability to exercise choices. They want to choose who they want as assistants and I think they are perfectly right.

From the perspective of women, the problem is exactly the same.

Women should not be or should not feel morally obliged to assist their disabled relative. They should be able to choose and if they so want, they must know that they may count on family supportive services when they need help.

Otherwise, in the long run, even the best relationship may fall in pieces and both members may suffer very much.

SPECIAL NEEDS POPULATIONS

THE DEAF AND THE HEARING IMPAIRED

SPECIAL NEEDS POPULATIONS

THE DEAF AND THE HEARING IMPAIRED

INDIRA SHRESTHA
Welfare Society for the Hearing Impaired and School for the Deaf, Kathmandu, Nepal

I am Indira Shrestha from Nepal. I am principal of the first and the largest school for the deaf in Nepal which is situated in Kathmandu. I am also working as the acting executive director for the Welfare Society for the Hearing Impaired. As I belong to developing country of South East Region, I can understand the needs and the problems faced by deaf and hearing impaired which are alike. Some of the special needs of the developing countries are as follows: -

Early detection of hearing impairment is extremely important for speech development and education. Hence all attempts should be made in various institutions to detect hearing impairment as early as possible. This can be detected even in a child a few months old. All risk children at the time of birth should be screened.

Prevention of hearing impairment is also very important. A set programs should be organized for mothers and would be mothers in health education and immunization to prevent disability. Parent counselling and educational programs should be encouraged.

Public awareness programs through mass media and educational institutions are essential as a majority of the parents hesitate to accept the disability of the child. This deprives him of early education and treatment, the services of non-governmental workers, social organizations, and community workers who can be availed for successful programs.

Educational opportunities should be provided for the deaf and the hearing impaired by the trained manpower with necessary educational and technical facilities. Training programs should be conducted regularly for teachers, social workers and field workers to upgrade the standard of their work. Training can be provided in the South East Asia region as the culture and technology are very much similar. Coordination of regional institutions with exchange programs of experts and students will improve relationships and build self-confidence among hearing disabled people.

A set syllabus for basic education, text books, sign language books, audio-visual aids, hearing aids and other necessary equipment should be made available. In developing countries a deaf person cannot buy a hearing aid because this is quite expensive. Attempts should be made to produce large number of cheap and simple hearing aids so that every deaf person can afford to buy one.

Skilled training program in different fields for rehabilitation is required to enable them to become self-reliant. A certain percentage of jobs suitable for the trained hearing impaired persons need to be reserved in the governmental and non-government organizations for economic and social rehabilitation.

There must be a good coordination and cooperation amongst international organizations. Modern technologies and expert assistance are required from the developed countries to support the educational and rehabilitation programs for the deaf and hearing impaired. I believe with the help of the technical assistance, trained manpower and financial help we can improve the situations of the deaf and hearing impaired.

SPECIAL NEEDS OF HARD OF HEARING PERSONS WITHIN THE SOCIETY

L. LINDEN
The Swedish Institute for the Handicapped, Bromma, Sweden

This paper deals with the group "Hard of Hearing People", one of the groups included in the term "Hearing Impaired Persons". There is a considerable variance in the use of the terms "Deaf" and "Hard of Hearing" why I'll begin with trying to explain the differences between the terms "Deaf", "Hard of Hearing", "Deafened" and "Hearing impaired". I'm reading this paper on behalf of the International Federation of the Hard of Hearing, IFHOH, which organization has tried to make the conceptions clear - at least within itself. The IFHOH has thus formulated the following definitions, which we are trying to get accepted.

A) Deaf: Denotes a person with a profound hearing loss. As a rule from birth or contracted before acquisition of speech, with no useful remant of hearing in speech range, not even with technical amplification.

B) Hard of Hearing: Denotes a person with a partial hearing loss varying in degree severity, but with useful remnants of hearing in the speech range, and benefitting from technical amplification. The hearing loss may either be present from birth or be acquired at some later stage of life.

C) Deafened: Denotes a person who was born with unimpaired hearing but acqired a complete hearing loss at some time after acquisition of speech often in adolescence and early adolthood. Although the hearing ability has vanished completely the person has a normal command of his language.

D) Hearing Impaired: A term denoting the overall group of people with any degree of hearing loss.

The most important need of the hard of hearing people is HEARING ACCESSIBI - LITY - hearing and communicating here and everywhere. Accessibility means here two Complementary things:

• Firstly it means the DISMANTLING of all barriers which stand between hard of hearing people and their full participation in everyday life; and
• secondly in means BUILDING all channels of communications that are necessary for hard of hearing people to function in the hearing world.

Thus, accessibility includes a variety of matters:

- hearing aids, - technical devices, - telephone compatibility, - rehabilitation, - counselling, - education, and so on. This list also includes those economic, cultural and social barriers that the hard of hearing must overcome.

There is no simple way for hard of hearing people to utilize access facilities - even if they exist. There are lots of technical, medical and social barriers that restrict the possibilities. The most important mean of facilitating access equipment for hard of hearing people is to increase AWARENESS of hearing impairment among the general public, organizations, corporations and governments. It's also important for hard of hearing people to be aware of the handicap of being hearing impaired and of the possibilities and restrictions of access facilities.

Communications is the base for most activities in our lives. To in a few minutes describe the different needs and perhaps problems of hard, of hearing people is almost impossible. To give you an idea of the needs I'll try to describe the organizations of the hard of hearing people and their formulated needs.

Normally the first organization in a nation for the hearing impaired primarily is for the deaf and more or less the intention is to comprise people who are hard of hearing too. However most organizations for the deaf concentrate their work of the problems of profoundly deaf people and this has been and is understandable. Sooner of later hard of hearing people have formed there own organizations and this happened very early in wellorganized countries. Through those organizations and professionals within the field of audiology the special needs of Hard of Hearing persons successively have been formulated. The organizations of the Hard of Hearing people have also formed an international body - the International Federation of the Hard of Hearing (IFHOH). The IFHOH has formulated some of the special needs of hard of hearing people under the following headlines.

A) Early detection of hearing loss: This is one of the most important issues for parents. Adequate early screening facilities for babies, comprehensive counselling services for parents and information about the handicap and how to approach the hard of hearing baby are still wanting in many countries.

B) Education: The question whether to offer specialised education to the hard of hearing or mainstreamed education has been discussed for decades, and will continue to be discussed. More and more the adult hard of hearing demand a say in the decision giving reports on their social isolation in regular schools.

C) Rehabilitation courses for the deafened: Helping those persons who have acquired a sudden and total hearing loss is one of the primary tasks for organizations. This task is all the more necessary as the public at large has hardly any awareness of the difficulties a deafened person has to negotiate. Unless he learns to lipread of similar systems he is not able to keep up any satisfactory social intercourse.

D) Helping to prevent social isolation: It appears that too little focus is given to the danger of isolation which faces people who find - especially in later life - that their hearing ability is waning and that they cannot partake in social life as they used to be able to. If their hearing loss is moderate, they are fitted with a hearing aid, but too little attention is given to the fact that this adjustment to a technical aid can be quite difficult. Organizations of the hard of hearing give extensive couselling in this field in order to relieve the hard of hearing person of some of his anxieties.

E) Public awareness programmes: Most organizations of the hard of hearing realise that unless they make public awareness driwes, the general attitude towards the hearing impaired will not change and there will not be a sympathetic approach to their problems.

A number of organizations have issued little cards giving "Rules for communication". The IFHOH has brought out a leaflet Hard of hearing - what does it mean? Several organizations have developed "Hospital programmes" designed at informing Hospital staff about the handicap and reminding them to speak and communicate with the patient distinctly and patiently.

F) Access: Having and securing access to public buildings and public facilities is the most crucial requirement for hard of hearing and deafened people. Concerning access we have among others strived to have congresses perfectly fitted to hard of hearing people. The third congress of IFHOH, which took place last July in Montreux, Switzerland, offered the following dievices:

1) Overhead projection of the full-length scripts in the three official congress languages;

2) The face of the speaker was filmed by a TV-Camera and could be watched on a big display in the hall for lipreading;

3) Discussions were written on overhead folios in the three official congress languages and could easily be followed on the display in the hall;

I'll finish this paper by guoting the only resolution which was passed by the Montreux Congress:

The dismantling of barriers which stand between hard of hearing people and their full participation in everyday life; and the building of channels of communication that allow hard of hearing people to function in the hearing world are the fundamental aims of IFHOH.

These are the principles of hearing accessibility.

Thus be it resolved that

1. hard of hearing people around the world make full hearing accessibility by the year 2000 the aim of their work; and

2. hard of hearing people challenge hearing individuals, professionals, organizations, industry, and governments to join us in our quest.

THE ROLE OF PARENTS' ORGANISATIONS IN THE COUNSELLING OF FAMILIES WITH HEARING IMPAIRED CHILDREN

HANNELORE and KLAUS HARTMANN
Bundesgemeinschaft der Eltern und Freunde schwerhoriger kinder e.v., F.R.G.

1. The "Bundesgemeinschaft" as a self-help group

The "Bundesgemeinschaft der Eltern und Freunde schwerhoriger Kinder" (Federal Association of Parents and Friends of Hard of Hearing Children) was formed in 1965. It is one of four independent national consumer organisations for the deaf, the hard of hearing, parents of deaf children, and parents of hard of hearing children. They are affiliated to umbrella organisations.
In the last few decades, the various governments of the Federal Republic of Germany have shown increasing awareness of the need for impaired people and their families to form organisations acting as their mouth-pieces. In various brochures on the handicapped and on government measures to improve their situations, the need for self-help groups has been stressed repeatedly.
Since its formation in 1965, membership of the "Bundesgemeinschaft" has steadily increased: it now has appr. 800 individual members inside and outside the Federal Republic, and 21 local and regional German associations are affiliated as well as two foreign parents' associations (Belgium and Brazil).

2. Fields of activity

National surveys: Early Detection of Hearing Loss. For several years now, one of the main focus points in the work of the "Bundesgemeinschaft" has been to draw the attention of the general public to the need for improving the early detection of hearing loss in children. For this purpose, we conducted several national surveys: in 1976, 1980, 1984. Our fourth survey is being planned for the autumn of this year. In these surveys we asked the parents of the children in the two primary grades at the schools for the deaf and hard of hearing by way of questionnaires, when the first suspicion of hearing loss in their child had come up, when the diagnosis had come, when hearing aids had been fitted and when early educational offers had commenced, to name only a few points. The preparation and evaluation of these surveys were carried out by Klaus Hartmann.
The results have so far revealed that, on the whole, hearing impaired children are suspected and detected at an age when normally hearing children are well on their way in language acquisition; that the time lapse between the diagnosis and the subsequent fitting of hearing aids is far too great; and that the development of these children consequently lags behind that of other children (see appendix). Various comments added by the parents to the questionnaires have revealed that quite a number of them consider themselves to be poorly informed and to have received very little counselling, if any.
Information Brochures and Leaflets. As a result of these surveys, the "Bundesgemeinschaft" decided to prepare information brochures for parents which were designed to fill the information gap many parents had complained of. We published the first edition of our "Guide for Parents of Hard of Hearing Children" in 1976 and sent inspection copies to many of the daily and weekly newspapers, in particular to magazines with parents as target group. The brochure proved such a success that when we prepared the fifth edition in 1985, we enlarged many of the chapters, especially the ones on pre-school education, on family life and on educational offers. The sixth edition appeared earlier this year. Since 1976, appr. 35,000 copies have be distributed among parents and counselling centres.
In conjunction with a steady increase in our membership in the late 70's, the wishes of the parents became more distinct. In addition to education, parents above all wished to be informed about technical aids for their children. In response to these requests, we published a supplement to our "Guide for Parents", called "Technical Guide for Parents". It informs parents about medical aspects of hearing loss, about the procedure for fitting hearing aids, about hearing aids and additional aids, about otoplastics, infrared-transmission, inductive loop systems, and so on. - The second edition will come out this autumn.
Following our second national survey on early detection of hearing loss, we became convinced that we would only reach a larger public if we decided to publish our findings by way of a "Memorandum". We wanted to put pressure on the politicians to not only listen politely but to act. In 1981, the first edition of our "Memorandum" appeared; in 1985, the second edition. For 1989 - when we have evaluated our fourth survey -, the third edition is scheduled.
For parents and other people requesting information about hard of hearing children or about our organisation, we have prepared a number of leaflets: "Hard of Hearing what does it mean?" - "Hard of Hearing Children in Regular Schools" - "The Fitting of Hearing Aids to Children" - "TV-Text and Subtitles" - "Book Recommendations for Younger Hard of Hearing Children."
Of course, even if our aim is to hand out information to parents at large, a minimum of advertisement for our own organisation is appropriate and indeed necessary. We have, therefore, prepared an information leaflet about our "Bundesgemeinschaft", and for the First International Congress of the Hard of Hearing in Hamburg, 1980, of which the "Bundesgemeinschaft" was one of the two responsible organisers, a brochure on the activities of our parents' organisation and our affiliated parents' organisations was published.
Ever since 1981, we have published Proceedings of our Annual Conferences, so that parents who could not participate in the conference for whatever reason have been able to acquaint themselves with the current points of discussion. It is often forgotten that parents with young hearing impaired children have more difficulty than other parents in finding suitable baby-sitters, so that it is more difficult for them to take advantage of educational offers like our conferences. Having the Proceedings of these conferences available in print not only gives them the opportunity to catch up on the latest discussions by way of reading, they can discuss the papers with their spouses or with other parents similarly affected.
Conferences, Seminars. It is our belief that only parents who are comprehensively informed can take an active part in the issues relevant for their children. We also consider it necessary to present the parents with the full scope of discussions, rather than giving them clear-cut advice. No one can take the responsibility for the education of the child from the parents. If you accept that they are responsible, you must give them enough facts and information to enable them to make a choice for themselves. This is what our conferences set out to do. There are also many issues, especially in the educational field, that may be approached by different methods (e.g. early communication training), and we consider it imperative that parents be acquainted with the various methods without being told which one to choose for their child.
We have noted with great satisfaction, that more and more married couples attend our conferences - this means that they will be able to continue the discussions after their return home; and more and more of them bring their children, as well. Especially for youngsters, meeting other hard of hearing adolescents may be thought-provoking. One young man of 16 said after this year's conference: "I can now see myself quite differently than before. I am no longer so much at odds with myself. Talking to the others has helped me to understand myself better."
Several times a year we offer week-end seminars for families with hard of hearing children and siblings. They usually focus on themes which are broad enough to allow for round-table talks about whatever parents wish to discuss. Having families attend these seminars is particularly advantageous for everyone: no baby-sitters are necessary at home; fathers and mothers face the same questions for the space of a week-end; well-hearing siblings mix with other hard of hearing children and with other well-hearing siblings. Many friendships have sprung up from these seminars.
Once a year we call a conference for delegates only of the local and regional parents' associations, in order to acquaint them with a new topic or some new developments, for instance in the field of hearing aids.

4. The Counsellors and Co-Operation

The board of the "Bundesgemeinschaft" consists of parents, some of whom have no additonal qualification or training relating to the field of hearing impairment, but others do. All the members of the board work voluntarily.
Parents who have just learnt that their child is hearing impaired need a lot of information. This information can be collected by a parents' organisation and made available. Sometimes parents who have made their own experiences with certain institutions and theories can tell other parents how they have coped, which can help!
But we also know that being a parent is not enough qualification to embark on the difficult ground of counselling other parents. Beyond our own involvement, a considerable amount of detachment is necessary, a desinterested communication with the other person that does not aim at winning rivals in some strife or fight against this institution or that person. We do not think that it is necessary for every member of a parents' board to have professional know-how as well, but some of them should have it. Constant and close co-operation with professionals is necessary, moreover, and should include controversial discussion of issues and points-of-view. This co-operation can only function, in the long run, if there is mutual respect for the position of the partner.

5. Funding

Apart from a Federal grant towards our annual conferences, we receive contributions via our umbrella organisation "Deutscher Paritatischer Wohlfahrtsverband" which is entitled to distribute parts of the pools profits made every year. We would like to see a continuous and substantial Federal grant towards the expenses of running our organisation, but so far, this has been wishful thinking. It appears to us highly unsatisfactory that, on the one hand, self-help is encouraged and esteemed officially, while, on the other hand, it is so scantily financed.

Appendix:

Reference:

"Fruh"erkennung? - Memorandum zum Stand der Erkennung und Forderung schwerhoriger Kleinkinder in der Bundesrepublik Deutschland. Published by: Bundesgemeinschaft der Eltern und Freunde schwerhoriger Kinder e.V., 1st edition 1981; 2nd, updated edition 1985.

WELFARE OF HEARING IMPAIRED PERSONS IN JAPAN

YOSUKE KAWAI
Japanese Federation of the Deaf, Tokyo, Japan

Services for physically disabled persons have been provided within the framework of relief of the poor even after the establishment of modern nation in. the Meiji Restoration. Only war veterans of the Sino-Japanese War and Russo-Japanese War had access to specialized services.

An episode in this era is that a deaf person arrested for stealing food begged the police to allow him to stay in prison after investigation. Outside, he had no place to work, and could hardly feed himself, while in prison, he could at least have free meals.

School education for deaf persons was started at the Kyoto House for the Deaf in 1878, but only for the rich. It is estimated that only 20 percent of the deaf persons received education before the end of the World War Two, compared to more than 90 percent of nondisabled Japanese. The discrimination was intense!

Then, deaf people were prohibited to receive education through the use of sign language, but only via oral communication. This deeply influenced the welfare of deaf persons. Oral communication education, which started to expand from 1920's, drastically improved deaf education on the one hand but on the other hand it gave deaf students a strong inferiority complex to nondisabled students. An image was created that a student who is good at oral communication is superior to a student who can only communicate by sign language. This image decreased the demand for sign interpreters, so necessary for daily living of deaf persons. The government organizations only relied on information from the deaf schools. A case worker working at the front line of welfare services did not understand sign language. It was considered enough to talk loudly or to communicate by writing.

The end of the war in 1945 changed the social system. The Imperial Constitution, in which civil rights of disabled persons were neglected, was abolished, and the new constitution of democratic sovereignty was established. Compulsorization of special education was added to Educational Foundation Law. With the improvement of school facilities, most deaf people were able to receive education after 1965.

The law for Welfare of Disabled Persons was established in 1949. Public welfare offices were organized at every local community, and a Disabled Person's Identification Booklet was issued. Organizations of disabled persons were founded throughout the nation, and talks with government administrations were started.

Before the war, deaf persons created the Japanese Society of the Deaf in 1915. This was far from a national organization, but was more like an alumni organization of graduates from deaf schools in Tokyo and Osaka. The society had activities such as amateur dramatics and publishing. This society died out with intensification of the war, but revived as the Japanese Union of the Deaf in 1948 after the war.

During the post war period, Japan made a remarkable economic recovery. The labor market expanded rapidly, and demands for labor increased. The Ministry of Health and Welfare decided to established a vocational training institute specifically for deaf persons. In 1958, the National Center for the Deaf was opened. The center offered five kinds of one-year vocational programs including, printing, Japanese typing, dress making, laundry and electronics, to graduates from deaf schools and those who lost their hearing suddenly during their youth. Most of them were hired by middle and small size industries. Their salaries were low and working conditions were poor, but this was the first step on the road to independence.

From 1965, the Japanese League of the Deaf started its own self-help group of disabled persons themselves who had higher education under the new democratic educational system. The league started to demand the right to information as a basic condition of human life. The league started to train sign interpreters, and demanded sign interpreters at campaign - meetings of candidates organized by public election - boards to protest the right to vote. Responding to deaf persons' organizations the Ministry of Health and Welfare started a Training Program for Sign Interpreters in 1970. Before this, the existence of such sign interpreters had been neglected by government administrations, schools and society. The new policy by the ministry encouraged prefectural governments to provide training courses for sign interpreters. The courses expanded to city, township, and village level governments. It is estimated that 20,000 persons received sign language training.

In addition to sign interpreters, the All Japan League of the Deaf directed a campaign for the acquisition of driver's license of the deaf like the western nations. Article 88 of the Traffic Law, which discriminates against deaf persons, was not amended. However, Article 23 of the Regulation under the law was changed so that the use of hearing aids would be allowed.

Hearing impaired persons have a communication problem of disability of "language". The 1976 amendment of the Law of Employment of Physically Handicapped Persons, enacted in 1960, improved the employment of hearing impaired persons by clarifying the employment quota (1.9% of employees of government agencies and 1.5% of private corporations) and penalty levy. However, acceptance of disabled persons by business corporations is still not sufficient. There are many complaints about unstable employment contracts and difficulty in human relationships. Especially middle-aged or elderly hearing-impaired persons are employed in work places with unfavorable working conditions and the problem is multiplied by their age. The national government provides a pension and social security for low income disabled persons, but the amount provided is not enough for them to live on.

The International Year of Disabled Persons triggered a variety of projects from both national and local governments. Sign language class, sign interpreter dispatch program, general culture course, composition class, and other programs have been provided not only by prefectural government, but also by city governments. More cities now provide evening discussion groups with sign interpreters for hearing impaired persons who are working during the day. These programs are partly supported from the Fund to Promote Participation of Disabled Persons by the Ministry of Health and Welfare. The fund also supports provision of technical aids for the hearing impaired such as viblarm (alarm clock using vibration), revolving light doorbell warning, baby signal (system of baby cry sensor and vibro-alarm), training of sign interpreters, assignment of sign interpreter at public places, and travelling interpreters.

The Commission for the Foundation of Sign Interpreter conducted three year project from 1982. The report of the commission suggested a certification of sign interpreter. The certification test has been prepared.

The commission report says that one certified sign interpreter in every 100 hearing impaired persons be assigned at public institutions. There will be big improvement of situations of hearing impaired persons. The league demands the establishment of the sign interpreter program, and is determined to continue the movement.

Sign language is an important language, but it was not accepted as part of school education for deaf persons. Sign language was even rejected. This education was considered to be a product of general idess and values which presuppose supperiority of nondisabled persons and may result in a neglect of identity of deaf persons. The league is asking the national government to establish sign language education in school system, and also to start comprehensive research of sign language.

Prejudice against deaf persons is typically exemplified by the neglect of sign language in Japanese society. We hope teachers and parents will accept hearing impairment as facts in the educational process and help to raise the motivation of hearing-impaired children to overcome the impairment.

If sign language is the best media for a hearing impaired person, the liberal environment using the sign language should be expanded around him. Hearing impaired persons should be able to live independently, to pursue their life ambitions,to mature as human beings, and to participate positively in social activities. This is our belief, and is the road to our real goal.

THE PRESENT STATE AND ISSUES OF THE HARD OF HEARING MOVEMENT IN JAPAN

MASAO TAJIMA
National Conference of the Hard of Hearing Associations, Osaka, Japan

In Japan, people with any sort of hearing impediment are simply described as "hearing impaired". Most Japanese, therefore, do not know the specific impairment implied. From our own work, we know that this description covers people who become deaf-mute, those hard of hearing, and people who vecome progressively deaf later in life - not just those people born deaf or deaf-mute. Consequently, our impairments vary in kind and degree: some find hearing aids helpful, whilst others have completely lost their hearing and don't need them.

This diversity creates difficulty when it comes to sharing together our common problems. Some don't use sign-language whilst others do, some write whilst others prefer talking. It really depends on each person's situation and nsocial background.

Also, as the movement of deaf-mute people has developed overwhelmingly in Japan, society here tends to assume that hearing-inpaired people are merely deaf-mute - in other words, those who have knowledge of "signing" with their hands and always do so. Accordingly, our first priority is to clearly identify exactly what comprises "hearing inpairment" and raise society's awareness of this.

I have to inform you that the Disabled Persons Welfare Law in Japan has the word "deaf" in its appendix, but not the term "hard of hearing". We did try to get the authorities to add the term "hearing-impaired people" in their last revision, but without success. Another difficulty was the weekly television program entitled "Time for the Hard of Hearing". This was first produced only for deaf-mute people who could understand signing....until recently this had no sub-titles for those people hard of hearing.

It has been ten years since the National Conference for the Hard of Hearing Associations (NCHHA) began its work amongst local groups - some of which had already been established for around twenty years. However, only last year did we start the first "Fact-finding Research about Hardness of Hearing" in collaboration with various private foundations and the Ministry of Health & Welfare. This is really our initial step.

Although a few other similar groups exist, we are the largest, playing a main role with these groups. Thirty-five groups comprising 3,000 members have joined us to date. If we included those ancilliary members exempt from subscription, then the figure increases to 4,500. However, even if we add all the members of all other groups in Japan, the total would still be much less than 10,000 people. This figure is still very small when you consider that - according to the 1987 report - there are 354,000 hearing-impaired people in Japan! These are all recognized by the Ministry of Health & Welfare and about 90% are reckoned to be hard-of-hearing and elderly people with progressive deafness. We have a long way to go....

The following are our main aims for the future:

1) To increase our membership to 10,000. Our newsletter "New Tomorrow", which is changing from quarterly to bi-monthly publication, will feature in this. New members will help further develop our movement and enable us to be the core group providing welfare work to people with hearing impairments.

2) To get NCHHA formally recognized as a foundation. In as much as we are a volunteer group, it is hard to get social acceptance. To appeal to society, to get feedback and opinions, and to get contributions are all very difficult as any big donations are subject to full taxation. This step should thus streamline MCHHA's management.

3) To cultivate Abridgment-Script volunteers, and work hard to get this system officially recognized by the authorities.

*Instead of sign-language, we use abridment-script, i.e. summary notes of spoken language on either paper or overhead projector. In a total of over 70 groups there are only 1,000 A/S volunteers. (Sign-language volunteers number 20,000 and nearly 200,000 have more or less learned it). If we're able to increase the number of A/S volunteers this will help us in our fight to get official recognition, so social workers can be trained in it. We are working at this together with the National Committee of Abridgment Script. Although Japanese is supposed to be harder to type up simultaneously with speech than the European languages, we can do this by using personal computers.

4) To establish video libraries of television programs and movies with subtitles and sign language included. This is only a temporary step, as the Japanese broadcasting world is not as understanding as that of America or Europe.

5) To increase society's awareness of the "Hard-of-Hearing" symbol, - and it's associated services - and to increase its operation in such public areas as hospitals, banks and city halls.

6) To extend our membership range to women and elderly people in order to increase our points of contact with society. Particularly in mind will be the elderly in this ageing society. This will mean around a further 2 to 3 million elderly people expected to become hard-of-hearing - presently they are not recognized by the Ministry.

We are going to expand our range of activities. Although disabled in some way, it is perhaps possible to say that people with hearing impairments are afforded more chances to participate in certain areas, which society mistakenly denies to others. Therefore we intend to use this opportunity to the full, both for ourselves and all other disabled people.

A STUDY OF MULTIPLY SISABLED DEAF CHILDREN IN CANADA

J.C.MACDOUGALL and D.MACLEOD
Dept. of Psych., McGill University, Montreal, PQ, Health and Welfare Canada, Canada

INTRODUCTION

One of the most controversial areas in the field of deafness, apart from the long standing debate concerning communication methodology, concerns the issue of multiple disability in deaf children and adults. Moores, (1987) in an extensive review of this area points to many problems which need resolution. For example, there is considerable controversy concerning the definition of multiple disability or multiple handicap. In the United States public Law 94-142, (1975) defines multiple handicap as follows: "multiple hadicap means concomitant impairments (such as mental retardation, mentally retarded orthopedically impaired, etc, the combination of which causes such severe educational problems that they cannot be accommodated in special education programs solely for one of the impairments". Many educators and health professionals feel that this definition is too restrictive and should include a wider range of additional handicapping conditions including visual impairment, health problems, emotional disturbance, perceptual disorders, mental retardation and other disorders. Gentile and McCarthy, (1973) define an additional handicapping condition as "any physical, mental, emotional or behaviour sisorder that significantly adds to the complexity of educating a hearing impaired child. As Moores points out, this latter approach entails a fundamentally different conception than that of a legal definition.

Other issues are concerned with the diagnosis and assessment of the multiple handicapped child or adult. One real concern is the suitability of training of the professional who makes the diagnosis in a deaf child who has a significant additional disabling condition. Often the professional involved is not trained in deafness, and therefor, the assessment itself is questionable. Other problems involve the categorization or labelling of deaf children as having an additional disabling condition. Since the assessment of mental retardation and many forms of emotional disturbance are themselves problematic, further complications can arise.

The present study represents an attempt to gain information from the files of deaf children in all regions of Canada in order to estimate the prevalence of additional handicapping conditions. Also an attempt was made to relate these conditions to the etiological patterns which have been identified for the population studied. This information is seen as a fundamental first step in understanding the problem of deaf children in Canada who have additional disabling conditions.

METHODOLOGY

The questionnaire developed during the course of the study was administered by over 1,600 cooperating agencies in every province of Canada. The questions dealt with age, sex, cause of deafness, age at onset of deafness, degree of deafness, visual status, and presence of additional disabling conditions for approximately 8,000 deaf children.

RESULTS

Table 2 presents percentages of deaf children in Canada by reported causes of hearing loss. The percentage of children who suffer deafness from prenatal causes is 10%; postnatal causes 24%, heredity-genetic causes 16%; other causes 9%; and cause unknown is a distressingly high 51%. Table 3 presents percentages of deaf children in Canada with additional physical and psychological disabling conditions. Table 1 presents the degree of hearing loss for deaf children in Canada.

Over 50% of the cause of deafness in Canada is unknown or unidentified. Hereditary and genetic factors account for 16%; maternal rubella for 9%, (although it is reported as high as 19% in Nova Scotia). Meningitis accounts for 6%, and trauma at birth for 5%. These then are the major causes of deafness for the population studied.

Thirty percent of the children studied had a significant physical and or psychological sisability. Legal blindness accounted for approximately 5%, brain damage for approximately 2%, orthopedic problems 2%, cerebral palsy 3%, and a number of other low incidence conditions were reported. As far as additional psychological problems are concerned 7.3% of the population were reported as having mental retardation, 7% emotional and behavioral problems, 9.2% as having learning disabilities, and 5% had other related types of disabilities. Table 1 indicates that a wide range of children with varying degrees of hearing loss from mild to profound were included in the study.

DISCUSSION

A major finding of the study is that the cause of deafness is unknown or unidentified in at least 50% of the population studied. Another significant finding is that 30% of the children have a significant additional disabling condition. The data on additional disabling conditions compares with that found earlier in the United States by Craig and Craig, (1985). There is, however, a considerable difference in the overall reported percentage of identified causes. In the American context it is reported as approximately 35% (Rawlings and Gentile, 1970) while in the Canadian context is reported as 50%.

CONCLUSION AND RECOMMENDATIONS

It is clear from this study that a significant proportion, approximately one third, of deaf children in Canada, do have significant additional physical and psychological conditions. This fact has serious implications for many areas of education and rehabilitation policy and planning for deaf children.

In the education sector the fact that one third of deaf children have additional disabling conditions has serious implications for the mainstreaming movement. Mainstreaming or integration of deaf children into regular classes is very difficult under any circumstances, and when deaf children have additional disabling conditions this process is made even more complicated. Educators must, therefore, exert extreme caution in any attempting to integrate all deaf children, into the regular school system.

In a sparsely populated country such as Canada it is often the case that there are too few of these unique children in each area to properly deliver programs. Therefore, some consideration must be given to the provision of centralized programs at certain stages of the development of each child, in order to maximize the educational potential of each child.

In terms of rehabilitation and health planning, the presence of this high number of children with deafness and other significant disabling conditions also has serious implications. Professionals not trained in deafness often have to deal directly with deaf children because of the presence of additional disabling conditions. Professionals may be in the field of mental retardation, physical disability, blindness or other areas of disabilities. More often then not, these professionals from allied fields have received little or no training in deafness and, therefore, find it difficult to provide appropriate programs for multiply disabled children. In addition, professionals who are trained in deafness, are often not trained in the allied fields of rehabilitation which would allow them to provide appropriate programs for these special children.

It is clear, therefore, that the training of specialists in deafness should be broadened to include information about the effect of other physical and mental disabilities on the deaf child, and, simultaneously additional information must be provided about deafness in the training programs for rehabilitation specialists in areas other than deafness. The process of rehabilitation for multiply handicapped deaf children should be of concern to various rehabilitation professionals including physiotherapists, speech and occupational therapists, psychologists and social workers. Multiply disabled children have often not received adequate service up to the present, not only because of the inherent difficulty of devising appropriate and costly programs for this relatively small number of children (2,600 in Canada overall), but due also to the traditional lack of involvement of allied professionals. Finally, increased awareness in the field of rehabilitation to the realities of sensory neural deafness, and increased interaction among rehabilitation specialists will lead to a dramatic improvement in the lives over 2,000 Canadian deaf children who have significant additional disabling conditions.

References

1. D. F. Moores, "Educating the Deaf: Psychology, Principles and Practices". Houghton Mifflin. Boston, MA, 1987.
2. United States Public Law 94-142, "The Education of All Handicapped Children Act of 1975", November 1975.
3. A. Gentile, and B. McCarthy, "Additional Handicapping Conditions Among Hearing Impaired Students, United States: 1971-72". Washington, D.C.,: Gallaudet College Office of Demographic Studies, Ser. D. No. 14, 1973.
4. W. Craig, and H. Craig, "Directory of Services for the Deaf". American Annals of the Deaf, pp. 130, 1985.
5. B. Rawlings, and A. Gentile, "Additional Handicapping Conditions, Age of Onset of Hearing Loss, and other Characteristics of Hearing Impaired Students. United States: 1968-69". Washington, D.C. Gallaudet College Office Demographic Studies, Ser. D, No. 3, 1970.
   

SOCIAL REHABILITATION: THE NORDIC APPROACH

SOCIAL REHABILITATION: THE NORDIC APPROACH

GRETA M. CEDERSTAM
Radet for Funksjonshemmede, Oslo, Norway

The theme gathering us this session is "Social Rehabilitation: The Nordic Approach".
Working out its Terms of Reference, the Social Commission in 1986 stated:
"Social rehabilitation is a process the aim of which is to attain social functioning ability. This ability means the capacity of a person to function in various social situations towards the satisfaction of his or her needs and the right to achieve maximum richness in his or her participation in society.
Equalization of opportunities means the process through which the general system of society, such as the physical and cultural environment, housing and transportation, social and health services, educational and work opportunities, cultural and social life, including sports and recreational facilities, are made accessible to all.
Two important principles are:
Society should be designed to enable full participation by all citizens: It should be seen as a defect of the society if people with disabilities are unable to participate in any activity they wish.
People with disabilities should be enabled to determine the goals of their rehabilitation and to exercize the same choice as others about their human relationships, the community and the environment in which they wish to live."
May be this seems to be a rather ambitious statement. Nevertheless, it was - and is - seriously meant. The question is only: How to achieve it?
As said before: the theme for today is "The Nordic Approach".
And the reason why we can talt about a Nordic and not only four separate national approaches, is of course our common cultural and ideological background.
Thus the Nordic countries Denmark, Finalnd, Norway and Sweden for many years now have tended to move in the same direction in the policy concerning people with disabilities. In all our countries it is accepted - at least theoretically - that people with disabilities have the same right to an independent living as other citizens.
Great steps have been taken. In Norway it has been accepted for many years now that the municipalities have the same responsibility for people with disabilities as they have for other citizens. This resposibility include housing, education, employment, transport, home services and social activities. Thus children with physical disabilities usually have been integrated in normal school.
For many mentally retarded, however, the situation has up to now been quite different. Institutionalization has been regarded as a good solution in many cases. But this year a bill has passed Parliament including the mentally retarded in the local responsibility. This entails abolition of the huge institutions and integration of the inhabitants in the community.
Today we shall look deeper into 3 aspects of the Nordic Approach. Mrs. Birgitta Anderssom from Sweeden will make us believe in ourselves and our possibilities, Mr.Nils Schultz from Denmark has A Holistic Approach to Rehabilitation and Mrs. Heidi Helenius, Mr. Kalle KonKola and Mr. Seppo Matinvesi from Finland will together present Social Integration by Reorientation - a Theory and Method.

BELIEVE IN YOURSELF AND YOUR POSSIBILITIES

BIRGITTA ANDERSSON
Sweden

I'm going to describe my job with rehabilitation and habilitation and the new methods of working that we have tried to find out during the last seven years and still try to reconsider and develop. It started as a project but now it's a part of the established social rehabilitation activity of the Stockholm country council.

The purpose is to help young people to get hold of and finally find their own and individual needs of service, personal assistance, housing and work.

Our activity is intended to serve young people who are severely disabled. Most of them are not only mobility disabled. They also have, say, speech impairments, or a bad memory or difficulties in organizing things in their life. Let me say that the way of giving personal assistance is more complicated than only assisting how to dress and how to eat. As you know, there are a lot of people all over the world living in institutions or with old parents for the reason only that they need personal assistance and they have never had the chance of living freely and independently. Politicians, social workers, welfare officers, doctors, the staff of institutions, and psychologists create these abnormal conditions of life. They do it by overlooking the ability of each individual and by overlooking the right of each young individual to be compared with others of the same age.

Even in a country like Sweden there are still young disabled people living in institutions such as long-term medical care (even if few in number). But there are even more people who get assistance in a way similar to that in institutions.

I mean that they don't have the chance and the right to be individuals. The reason is the same as I mentioned above.

Accordingly it might be difficult to get and to keep the right to decide about private matters when you have a disability and need assistance. But it's even more complicated when you also have a speech impairment or a bad memory or if you have been for a long time in an institution.

If you really want to support disabled persons so they may have a good life, to reach and to fight for equality and participation, if you want to offer a good social rehabilitation/habilitation then you have to be aware of the oppression and its cause.

The main points in our work with social rehabilitation are

• information
• advice
• support

The tools are courses and learning from the experiences of other persons with disabilities. (Pear counseling).

From the very beginning of the project we invited people to a course about personal assistance and housing. We gave people the time they needed to talk and to express their own thoughts and dreams. The subject of the course was: "What to do when I need personal assistance throughout twenty-four hours?". Our ambition was to give concrete information about the rights, about different ways to organize assistance and about the possibilities to get a dwelling. To be able to give this information in a reliable way we invited as lecturers other disabled people with similar experience. This course became a great inspiration for those of us who worked in the project. We had to do more and more courses like the first one and then support the participants in their decisions.

Many of the persons we get in contact with prefer to participate in one or several of our courses. We prepare the course carefully. They have to suit every individual participant.

Apart from the courses, we also have small meetings with each one of the young disabled persons who wants our support. After that together we continue the way to reach the goal.

The need of support is of course different from one person to another.

The basis of our job is to help people to find and develop their ability and possibilities in the society.

If other people always control your life, you very often become passive without questioning their right to do so. But then you have to turn this situation up side down. To be able to do so you must find out your ability and trust in it. And then you need both ideas and inspiration. It could be a long process to create this attitude to yourself.

By meeting other people with a similar disability you get inspiration and ideas. It is our job to give this information in the courses and at other opportunities.

The next step is to convince other people about your ability. Therefore we help the young people to give a concrete description about their disability and separate it from their ability and need. People must get the chance to take the responsibility for giving a good introduction of themselves.

Advice and information is, as I said, a great part of our job. The next step to the goal is to find out the right person, responsible for service and whatever people ask for.

Finally we support people to gain what they have decided. It could be to create personal assistance or to keep the assistance they have got earlier. It could be to find a suitable dwelling or a job. That means a lot of discussions and meetings with professionals. This job must be done without overprotecting and power. We could assist people in speaking and writing but never do it without their attendance. There is no short cut.

The pitfall in our job are to hurry on with the discussions and to decide, instead of giving advice. But if you are aware of these risks it is easier to avoid them.

A HOLISTIC APPROACH TO REHABILITATION

A summary of the unity model of the EC-project based on the needs of the family of the handicapped - an account of the needs and problems following an accident.

NIS SCHULTZ
Arhus Municipal Social and Health Administration, Arhus, Denmark

The EC-project in Denmark has been in contact with well over 300 people who have been injured in an accident. The purpose of this contact was to find adecuate methods of effecient prevention and relief of consequences of accidents. And to investigate the prerequisite for a succesful rehabilitation.

Client and case work has been performed with cooperation with many parties. The experience gained points at the necessity of a coordinated comprehensive effort with the participation of several different specialists. A model has therefore been worked out and tested for a methodical and systematic work in such cases.

We call it the unity model, and it shows the characteristic problems after an accident. And it shows at which stage these problems typically appear and what can be done about them. The model is both a tool and a check list for the individual therapist or social worker and a means of cooperation between institutions. It will also be applicable in the work with other groups of persons than handicapped.

The unity model shows that efforts shall not only be concentrated on vocational rehabilitation and training. To make the rehabilitation proces succesful, it must start as soon as possible after the accident. The efforts must be coordinated and directed towards both economical, social, psychological and health factors.

A comprehensive effort must be made with the needs and problems of the handicapped family in focus. When there is an accident, it is rarely only one person who's entire life changes from one moment to the other. It is the life of a whole family, typically spouse and children. But also when the handicapped is single, the nearest relatives are affected. Therefore it is always a handicapped family.

Figure 1 is a unity circle. Each sector of the circle shows the individual areas of life which should be included in an overall description, and the lines are dashed to demonstrate that no sector can be isolated from the other sectors. The problems in one sector engage with the problems in other sectors. To solve the problems in these six sectors demands contact with many public systems, authorities and institutions. Therefore an extensive coordination work is needed in each individual case, a work which is not performed to a sufficient degree today, at least not in Denmark, where no public authority - or one specific person - "follows" the handicapped family.

It is our experience that the handicapped has very often to be his or her own coordinator, without being aware of this beforehand. It remains therefore also a fact that too often clients do not receive the support they could have had, among other things because they have not the necessary reserves to make the many contacts - just as only very few know enough of the possibilities in the social system to be able to use this to the extent necessary.

The experience gained from our work tells that the period and course of events after the accident can be divided into three stages.:

• treatment
• readjustment
• new orientation

The division into stages might be extended to include four, five or six stages. But the division into three stages is practical and usable - seen in relation to the problems of the handicapped family and the initiatives to be taken. However, it must be stressed that this is a model of reality, because the group of handicapped is not so homogeneous. There are differences as regards the type and extent of the injury - just as the clients differ in sex, age and social background.

The development is therefore individual through the three stages, which shall be considered only a guideline for the work and for the understanding of the problems. It should not be considered a structure which the individual handicapped person and the family must fit into. Still, there are some typical features - here caracterized by the differences in the stages.

This is illustrated in figure 2, which is an attemt to clarify the difference in the situation of the family at stages 1, 2, and 3 in relation to such concepts as effort, role etc. The table can be used as an indication of the development which the handicapped typically goes through. I will now give a more detailed description of the caracteristics of the individual stages - seen from the handicapped family's point of view and according to the unity circle.

The treatment stage.

The keywords at the treatment stage are examination, diagnosis and treatment. Also other problems make themselves felt, and in figure 3 some important problems are listed in relation to this period. These are, as mentioned before, of an individual nature. The treatment stage focuses on remedying the physical injuries after the accident. At the acute stage immediately after hospitalization, it may be a matter of life and death. But also for months or years after the accident the physical treatment may be central. For example in connection with re-hospitalization and more operations.

Many questions may only find their answers after months or years, questions like: How serious will the consequences of the accident be? Can the injured person resume his work? Is rehabilitation to a different job possible or is the working life over? This uncertainty and wait create in themselves a number of problems, and it is vital for the injured person and the relatives to find a solution and be able to make plans for the future.

To the relatives it is important to get as accurate information of the patient's situation as possible. And most often they need concrete guidance and assistance in the solution of practical and financial difficulties, too. Especially if the patient is a supporter of family. But they, as well as the injured persom himself/herself, may also need psychological assistance to work the shock and the reactions after the accident.

Unfortunately it is not seldom that the accident has been so serious that the family's previous life is ruined and they will have to accept an entirely new reality. This creates many social problems of an overwhelming and disturbing character. The whole family will need help. Therefore it cannot be emphasized too much that there is a need for a person next to the family to handle the social and emotionel problems - including a coordination of the comprehensive effort. The main aim must be, as far as possible, to maintain the family's present standard of living, both socially and financial.

Readjustment.

The readjustment stage is the transition between the life ended with the stay in hospital and the period forming the basis for the handicapped family's future life. A readjustment may be necessary in both the physical, the psychological and the social field. This depends on the type and extent of the accident, of the occupational or educationel situation of the handicapped. But it depends not least on the offers the family receives after the discharge from hospital.

Figure 4 mentions the problems and conditions which will be especially pronounced in the readjustment period. Greater demands are now made on the family of the handicapped for active cooperation than at the previous stage. Where earlier it was vital to "repair" the physical and psychological injuries and alleviate the serious social consequences, the efforts at this stage are to a higher extent pointing forward.
Pain, speculations, family difficulties, a poor economy and other problems often drain the person concerned for energy to start something new. What is needed is an active support to work the problems following from the fact that the handicapped has to readjust to a new identity and to new roles in relation to his/her work, family and surroundings. But this support is made difficult if the daily life is marked by speculations on how to manage the financial obligations.

If new initiatives are not taken as soon as possible, there is a risk that the handicapped looses his/her self-confidence, skills and challenges. And this may effect the motivation for starting a rehabilitation.

Meaningful wait.

Beyond psychological support and financial guidance to the family, it is often necessary to start a psychological pain treatment with the purpose of teaching the handicapped to function with his/her handicap. A neuropsychological rehabilitation may also be needed, aiming at reestablishing the previous intellectual capacity if the accident has resulted in for instance memory or concentration difficulties.

At this stage there is also a need for a vocationel guidance with a view to later return to the labour market. It must be clarified whether the person in question will at all be able to work again - or if he/she should apply for a pension. The main problem at the readjustment stage is that the handicapped risks becoming more and more passive - perhaps come to a dead lock. The effort must here concentrate on keeping him/her activated - at the same time as the handicapped becomes orientated towards the future. The keyword is "pre-rehabilitation" which means a period of strengthening the handicapped - both personally, in the family, financially and socially.

New orientation stage.

The new orientation stage is characterized by the handicapped normally entering a more active period as regards job, training/education and contact to the surroundings. This is an active stage. Figure 5 shows the areas to be weighted highest with the handicapped family, namely to job and spare time/network.
Now the support can exist as an open offer of help, but the family has hopefully become stronger pari passu with the development and is itself best capable to evaluate to which extent this offer is needed. The active offers from the authorities can by and large be limited to concern the return to the labour market and the establishment of a safe network. If these problems are succesfully solved, the other problems, such as the financial and the social/psychological problems, will automatically be reduced.
It is important that the rehabilitation is not considered completed before an intersectorial effort has secured a connection to the labour market for the handicapped in the form of a paid job or unemployment benefit. Or until the question of a possible pension has been settled with a decision on the
possibilities of sheltered job or another sort of long-term rehabilitation.

Finally let me stress again that the problems following an accident shall be considered as a whole and be solved through an interdisciplinary cooperation. The objective is to secure the client against unnecessary difficulties so that the result of the rehabilitation effort becomes as favourable as possible, also after the formal termination.

Figure 2

SOCIAL INTEGRATION BY REORIENTATION

- A THEORY AND METHOD -

H. HELENIUS, K. KONKKOLA, S. MATINVESI
RIFI ry, c/o Kuulonhuoltoliitto, Helsinki, Finland

This lecture is based on a memorandum written by a working group at the National Board of Social Welfare, Finland and the experiences we have gained from strategies for social rehabilitation in Finland.
The term "social rehabilitation" used in this paper is the one RI Social Commission defined and then approved in 1986 when it was also presented to RI Assembly in London. It is as follows:
"Social rehabilitation is a process the aim of which is to attain social functioning ability. This ability means the capacity of a person to function in various social situations towards the satisfaction of his or her needs and the right to achieve maximum richness in his or her participation in society."

Social Functioning Ability and Social Integration
Social integration is dependent on a person's social functioning ability. Becoming disabled is one of the things that impairs this ability. The severity of the disability and the extent of the loss of social functioning ability are not necessarily closely related. Many personal factors are involved. Also the general attitudes of the society have their impact on a person's reactions towards disability. To face the fact that one has become disabled may be so difficult that the person excludes himself from all his previous social contacts. On the other hand, in the prodess of health care and rehabilitation a person with disabilities is easily givden a passive role - he becomes an object of other peoples' work. This "patient-role" can even become dominant in his life.
General attitudes in society also infuuence the behavior of the disabld person, his family and the professionals involved. This is an important fact to realize. The general behavioral models that the society accepts for the disabled person are not necessarily the agreed goals for social rehabilitation. A similar situation concerns congenitally disabled children. Everyone of us has to learn our own social functioning ability. A disabled child may be protected by his parents and other persons, for instance, against failures and thus be left without essential experiences.
To become the parent of a disabled child may also impair one's social functioning ability. Parents need support in this situation to be able to foster their child to become an independent disabled grown-up.

The Need for Reorientation
A natural part of our lives are different kinds of developmental and maturation crisis, for which we can prepare ourselves at least to some extent. Disability comes unexpectedly and is considered as a traumatic crisis.
When a person becomes disabled or a disabled child is born to a family it means a threat not only to the identity of the person but also to that of the whole family. The event in itself does not give a person new values in his life nor change his attitudes towards disability. His previous identity as an ablebodied person still remains. So, there is a need for reorientation.
Reorientation requires the assessment of one's values and attitudes and the capacity to learn to respect new things in oneself. It is always a two-way process where the environment is as important as the individual. This means for example that societies should be designed to enable full participation of all members.
A reorientation process starts immediately after an injury, arising from experiences of everyday life and the feelings that are inevitably to be met. The strong emotions that are involved in the beginning of the crisis can continue to have an effect for a long time during the rehabilitation process. In this situation it would be necessary to face the feelings, to live them through and to examine them in the kind of an environment where these feelings are accepted and seen as a natural part of life. Adaptation training courses are such an environment.

Adaptation Training
In the sixties, organisations of disabled people in Finland started to develop adaptation training as a means for social rehabilitation. Provisions for adaptation training are appended to both the legislation of health care and social welfare. And right from the beginning the social insurance systems have used adaptation training, too.
The aim of adaptation training is, by means of a reorientation process, to support a disabled person and the family in their social integration, to enable them to accept the realities of the disability and to enable all social functioning capacity of the individual to be fully put to use. Often this goal is hard to reach because of the different kinds of barriers in society.
Adaptation training is mainly given on specially planned courses which last from one weekend to three or more weeks. The programmes of such courses include discussion groups, lectures on medical, social and psychological factors and leasure-time activities.

Using Group Dynamics
The essential aim of a reorientation process is for the individual to gain an identity as a disabled person or a parent of a disabled child. In this process the support of people in a similar life situation is highly important. A mere mutual experience is, however, not enough.
Adaptation training accentuates above all the examination of the relationship between a disabled person and the attitudinal environment of the sodiety. The most essential part of adaptation training is a discussion group in which people can work with their feelings, experiences, values and attitudes towards disability. The group gives them the possibility of seeing their own experiences in larger contexts, to realize that other people are going through a similar process.
A discussion group has to be small enough to ease the interaction between the members. It has to meet intensively and have a skillful discussion instructor. The instructor has to support the search for identity of the members and the growth of their self confidence. Because it is essential in the group to examine values and appreciations connected with disabilities, the instructor besides knowing essentials of group dynamics, must also know about his or her own attitudes towards disability.

Conclusions
Disability impairs the social functioning ability of the whole family as well as the individual in question and thus effects their social integration. By reorientation it is possible to gain a new identity as a disabled person or as a relation to one. Reorientation is a personal process which can be supported by means of social rehabilitation. In Finland a strategy called adaptation training has been developed for this purpose. Experience of adaptation training shows that by using group dynamics it is possible to help disabled people and their families to go through their reorientation process successfully.

References

1. A working group memorandum by the National Board of Social Welfare, Finland (not available in English): Sopeutumisvalmennuksen kehittaminen; Sopeutumisvalmennuksen kehittamistyoryhman muistio; Sosiaalihallituksen julkaisuja 15/1986; Helsinki 1986, Finland; 137 pages
2. Minutes of the Business Meeting of the RI Social Commission; London October 12 1986

Title:
16th World Congress of Rehabilitation International No.13 P.543-P.589

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