Do we have guidelines and directions for such an expanded effort in the decade ahead? Some have been carefully studied, planned and even tested in the United States and in other countries. We need to heed them. Respectfully, I would like to include the essence of some guiding principles that can well serve as stimuli for specific recommendations for changes leading to genuine inclusion of the person with handicaps in society. Under the sponsorship and leadership of the Disabled American Veterans (DAV), with the cooperation of the World Veterans Federation (WVF) a working White Paper Conference was conducted in Houston under the auspices of TIRR and Baylor College of Medicine in April, 1980, preparatory to the IYDP. A group of 55 persons including handicapped persons and professionals, identified such principles. The essential, general resolution of this group is included as Addendum A to this Testimony. Principles were developed for changes in our Service Delivery System: its overall situation of benefits and services, Health Care and Rehabilitation; Education; Employment; and Community Support Services and the Environment: including the physical environment; public attitudes; community resources; and social, cultural and educational opportunities. The specific 27 principles are included as Addendum B. The full document is appended as Addendum C. These general principles and specific ones were distributed by the World Veterans Federation, to the World Health Organization (WHO) and the International Labor Organization (ILO) and UNESCO where there was agreement and acceptance of this report. Other international organizations including the United Nations (UN), in its long-term program have adopted many of these principles essentially unchanged. Implementing examples for each principle in the full document are being added to the follow-up meetings in Europe under the WVF and the British Limbless Ex-Servicemens Association (BLESMA) and other interested groups. Similarly, reports such as the Canadian government one entitled "OBSTACLES" are available and deserve careful concordance to establish the components of a national policy 'thrust'. In conclusion, I would like to quote the Fundamental Principles of Inclusion from this White Paper: "The potential exists for the inclusion of all persons as full members of the world community. Handicapped persons, who today are excluded from full membership, represent fundamental human issues and concerns. By finding solutions to problems of exclusion, handicapped persons can become contributors to, and models for, the broader society. Inclusion is not for the few, but benefits all. Handicapped persons share a universal human right to participate in affairs that influence their lives and to be included in all aspects of community living. The right of participation carries a concomitant obligation to exercise this right in a responsible manner. Each individual is the best judge in everyday life of what is good for him or her (including when a decision-aiding agent is needed). Social judgement or standards should be imposed on individuals only when failure to do so imposes unjustified burdens on other individuals or on society. Handicapped individuals share a universal human right to take risks and to fail. The "burden of risk" assigned to handicapped persons by society should not be permitted to exclude them from opportunities available to all citizens. The adoption of principles of inclusion requires change in attitudes and behavior of all members of the community, including those of handicapped persons. Changes in society can have negative consequences as well as positive outcomes. Mechanisms are needed to monitor the effects of change and to initiate appropriate responses. Learning from mistakes should be inherent in the process of attaining inclusion." I realize, too, that I have been general and conceptual, because in the properly limited time available, I could not do justice to a thorough discussion and delineation of specifics which I have appended. I and others will be pleased to work with your staff in such detail as you believe you would like to explore. So, may your efforts add weight to the benefits we shall all have need for and access to as we face the hazards of disability in our families of an increased life span and trauma and chronic disease, which any one of us may face in our lifetime. Future success shall afford the rewards of adding resourceful years of life at any age and our national capabilities will increase. We should be able to strengthen our great nation and have humble pride in our continued valuation of the self-esteem and resolve, at reasonable cost, that control of disability offers. Its continued dedication to the individual upon which we have built our democracy must not and will not be abandoned! Thank you! ADDENDUM A The current economic situation in the world and foreseeable economic trends require more than ever, that all human, technological and financial resources be used to the maximum benefit of the largest possible sectors of society. The numbers and proportion of persons with handicaps are constantly increasing because advances in medical and biological fields have improved the health of the public and lengthened life expectancies, while the accelerating pace of life in an ever-crowding world has brought increasing hazards and personal injuries. Therefore, prevention of handicaps and the inclusion of persons with handicaps in the community are of paramount importance in every society. The experiences of persons with handicaps concern society as a whole. The handicapped person plays a role in identifying hazards to be eliminated, thus contributing to the prevention of handicap for others. Handicapped persons reveal hindrances and barriers which are detrimental not only to them, but to other persons in society. In being the catalyst for the removal of barriers, the handicapped person benefits society as a whole. It is essential to recognize that at one time or another in a lifetime, each person will have to cope with handicap, either temporarily or as a part of aging. In almost all instances, anything done to make the life of the handicapped person easier through inclusion will in the end be of benefit for all in everyday life. Efforts to attain inclusion also help solve a general social need to improve accessibility to man-made components of the environment for all persons. The inclusion of handicapped persons depends on material and social structures and also on the attitudes of community members. These attitudes stem from fundamental ethical concepts of society. Inclusion is based on several basic ethical principles. • Firstly, the principle of equal opportunities for all and the need for every individual to be able to use his abilities, whatever they may be, in the service of each other and the community. • Secondly, the principle that technology should be designed to serve the individual, whether handicapped or not, and should help to attain self-fulfillment rather than being an end in itself. Otherwise, it causes mankind to adapt and conform with it, to the detriment of the quality of life. • Finally, and foremost, can we accept a society which sets rigid and arbitrary standards or expectations to define those who are included and those who are excluded? Should we not do all in our power to insure that the community draws benefit from its very diversity by developing opportunities for each and every one of its members to participate more fully in the sum total of its activities? The contributions of handicapped persons have been demonstrated throughout history, and therefore should be expected. By recognizing the right of the handicapped person to lead a fully active life, we contribute to social justice and accept the right to be different. Such goals constitute one of the highest aspirations of mankind today the world over. For all these reasons, it is essential that society include handicapped persons as fullfledged members having the same rights and assuming the same responsibilities as all others. This document defines common principles to be used and changes to be effected for achieving progress towards inclusion. The concept of inclusion implies a fundamentally new definition of handicapped persons, not as people who are "less than complete," but as full members of society with the rights and responsibilities of all citizens. Inclusion is not based on pity, compassion, charity or fear. Rather, it stems from a humanist belief in the fundamental importance of the ability, self-determination, dignity, and worth of all persons. ADDENDUM B SERVICE DELIVERY SYSTEMS: PRINCIPLES AND RECOMMENDATIONS OVERALL STRUCTURE OF BENEFITS AND SERVICES Principle 1 In most countries, programs to provide disability compensation and other benefits and services to handicapped persons have evolved piecemeal with no overall logic or consistent principles guiding their development. There are many alternative ways benefits and services might be fundamentally restructured to attain administrative efficiency, maximum cost effectiveness, and optimum benefit to handicapped persons. Principle 2 Most countries have traditionally addressed problems in their systems of benefits and services by modifications in specific programs. An alternative approach recognizes that it may be less expensive and otherwise preferable to replace some current services and benefits by direct cash payments to handicapped persons to allow them to purchase needed services. Principle 3 During the period of economic restraint which is facing virtually all countries, the cost of programs and services is a fundamental issue. Methods to maximize the benefit of available resources are urgently needed. Principle 4 The availability of information and education about services and benefits is a fundamental right of handicapped persons. HEALTH CARE AND REHABILITATION. Principle 5 Prevention of disability should be an important aspect of health care and rehabilitation services. Principle 6 Effective health care and rehabilitation of handicapped persons require a comprehensive combination of services and assistance that is geared to the changing needs of the individual in adapting to a functionally limited status from onset through followup and community living. Principle 7 Effective methods of quality assurance are essential. Principle 8 Technology should be used judiciously as an effective component of rehabilitation. Principle 9 Appropriate collection, management, and dissemination of information are essential to improve the effectiveness and efficiency of health and rehabilitation services. Reliable information should be available to planners, providers, and consumers of services. EDUCATION Principle 10 Education for handicapped children must overcome the social isolation inherent in specialized classrooms while at the same time avoiding deficiencies in resources and unmet needs that sometimes characterize "mainstreaming" of the handicapped child. This is essential if equal opportunities are to be exploitable later in life. Principle 11 Public education for all students should foster a common ground of understanding about disability and a positive image of handicapped persons as full members of the community. EMPLOYMENT Principle 12 Employment opportunities for handicapped persons must be developed as a fundamental means by which they can participate as full members of society and contribute to their own self-development and economic viability. This is particularly true since work activities have both productive and social functions (such as fostering selfesteem). Thus, even though it may in some cases be less expensive in monetary terms to offer income reimbursement to handicapped people of working age, social factors may still favor rehabilitation for employment and an earning role. |