30.11.1999

II The prerequisites for equal participation

• 1. An increase in awareness
• 2. Accessibility
• 3. Rehabilitation possibilities
• 4. Support services

1. An increase in awareness

Information is the first stage of awareness. It is also the prerequisite of all activity. On this basis, we in Finland must assume the task to increase awareness of persons with disabilities, of their rights, needs, possibilities and their expertise in the development of society. Further, we must ensure that the responsible authorities will distribute current information of available programmes and services to persons with disabilities, their families, professionals in the field and the public. Information on disability must be presented in forms suitable to both the persons with disabilities and the public.

In increasing awareness, training activities are essential instruments. Therefore, we must ensure proper training to the personnel involved in the organization of programmes and services meant for persons with disabilities. Training programmes must be designed in cooperation with disability organizations. Persons with disabilities must be hired to act as teachers, directors or counsellors within them. In both the training of professional personnel in the disability sector and in the information on disability included in the general training programmes, the principles of full participation and equality must be appropriately visible.

The best communicators of disability-related information are persons with disabilities themselves or their own or their parents' organizations. This is why they must make themselves visible in a positive way. They must organize systematic information campaigns to promote their own needs and goals. The campaigns must be directed to all members of society, especially to the communities near to persons with disabilities. They must start from the life environment of the person with disabilities and advance to where major decisions are taken, both political and practice-oriented. Disability information must be made a part of everyday social activity. Only then may it transform into an awareness guiding practical activities.

For the general awareness on disability to increase, the level of disability awareness must also increase among persons with disabilities themselves. The persons in question must be capable to recognize their own needs, possibilities, expertise, duties and rights. In this process, disability organizations must support their members. They must improve the increasing of awareness among family members of persons with disabilities, also. We must strive towards this goal by the means of both functional and social training.

2. Accessibility

Removal of invisible obstacles

Today, the society is not open to all. It is not always a question of direct discrimination but rather of a lack in proper consideration. In Finland, we must also recognize as important goals both the consideration of the needs of persons with disabilities and the accessibility of society as part of the equalization of opportunities in all fields of society.

The greatest obstacle to approaching, gaining access and to acting in society are the attitudes. If the community does not take into account the demands caused by differences, persons with disabili- ties will not be able to participate fully in the activities of society. The obstacles that are invisible because of attitudes turn into stairs, buildings without lifts etc. All the ramps con- structed only bring one to new obstacles, if the community continues to be intolerant towards the disabled. This is why we must take action to change the attitudinal climate more positive towards persons with disabilities. By changing attitudes, invisible obstacles must be turned visible, so that they can be removed.

Persons with disabilities themselves have a central role in all this. They are good advocates of their own issues. By being involved in everyday activities, by being visible and by influencing decision-making in society as experts, persons with disabilities can best promote change in attitudes towards the positive direction.

Disability organizations are to support and train their members in this task. In addition, they are to organize regular information campaigns directed to the public. All options of modern media must be used in the realization of these campaigns. In this task, society must provide financial support to disability organizations.

The functional openness and accessibility of society may be improved through constructing within the ordinary systems "the special", which is necessary for the removal of obstacles. This must not be done by separate costs or by activities realized in a physically separate location. "The special" must not be anything for which the costs are covered by someone other than the customary organizer of the service or activity. The services of the municipality must be available to all its members. Persons with disabilities are members of their society and municipality just like everybody else. Thus, in their services production, municipalities must consider the needs of persons with disabilities, as well. The service providers must be aware of disability as a person's special quality and to react positively to the need of special solutions caused by disability.

The accessibility of physical environment

The member states of the United Nations are required to initiate measures to remove any obstacles to full participation in physical environment. The accessibility of physical environment can be taken to include at least four aspects:

• The development of norms, guidelines and, if necessary, legislation to ensure accessibility to housing, buildings, traffic, the streets and other outdoor environments;
• The provision of adequate information to architects, engineers and other professional designers about the principles and suitable measures to guarantee accessibility;
• The inclusion of accessibility requirements in the design and construction from the beginning of the designing process;
• The use of disability organizations as consulting experts in the development of norms; the local involvement of these organizations in public construction projects.

Construction

Internationally, Finland has a modern set of binding legislative norms over construction. The goal is obstacle-free access for persons with disabilities into public buildings, services and businesses. In renovation of existing public buildings, accessibility is one of the goals today. Access to buildings may be guaranteed by constructing ramps and lifts and by increasing the level of equipment in the buildings. Increasing the level of equipment means, for instance that public buildings are equipped with the most common assistive devices needed by people with different disabilities. Such aids could be, e.g., text phones, induction loops or character-reading machines. Old buildings can be rendered accessible through a redesign of the space. The disability perspective must also be taken into account in the development of construction legislation. Further, is necessary the direct and democratic participation of persons with disabilities in the decision-making process of municipal community planning. Such planning must be promoted and supported as includes the disability perspective also as a security factor. The maintenance activities of streets and the environment must be influenced by bringing forward the needs of persons with disabilities.

The construction legislation has recently been amended to include a requirement on the suitability of dwellings to persons with disabilities. Now, we must strongly reenforce and develop the present methods of guidance and financing, especially to renovate old dwellings free of obstacles to accessibility and activity. The goal must be full lifetime validity of the dwelling, which means that it must be suitable to inhabitants of all ages. Apart from the built environment, more attention must be paid also to the improvement of the functional environment, its usability through the design, colouring and recognition of everyday utensils, for example.

Public transport

Also, in recent planning and decision-making regarding public transport, more attention has been paid to accessibility aspects. The relative weight of the perspective emphasizing the need of all users has not yet been fully understood, however. Therefore, we must concentrate on making the principle known and on securing continuity so that public transport would develop into a service for passengers with functional impairments.

In the planning and realization of traffic arrangements, we must take into account the needs of those passengers for whom the use of transport is especially difficult. Thus, we create equal opportunities to participate in the activities of the society. Most often, these solutions are the most cost efficient and best ones for the average passenger, as well.

It is important that this perspective be considered in all fields. It must be considered in major development and research projects regarding public transport, in the planning, acquisition and servicing of the normal traffic environment and transport vehicles, as well. All new and existing public transport vehicles must be rendered accessible in their entry when they are serviced. The goal is total accessibility in public urban and rural transport, the different types of transport (buses, trains, aeroplanes, ships etc.). Also, in furbishing vehicles, the comfort of different client groups must be considered (height of seats, armrests, footrests etc.). What is essential for passengers with functional impairments is the accessibility of the whole route, from home to the destination, and the availability of travel- related information in a suitable form.

The terminals of long-distance traffic must have guidance and assistance services available. Also travel-related information, such as announcements and timetables, must be available in a form suitable for all client groups. If public transport services fail to secure an accessible route for a passenger with disabilities, then complementing transport services are necessary.

The value of public transport as one of the most important basic services in society must be recognized. Starting from this evaluation, it is possible to develop traffic arrangements in such a way as renders public transport truly capable of providing equal service to all passengers, whatever their place of residence, age or disability. In practice, this requires a continuing open cooperation between those responsible for traffic planning and those constructing and importing traffic vehicles. Both traffic companies and their customers should enforce their cooperation. Disability organizations are an essential part of the organizations representing consumers. As the goal is public transport suitable to everyone, it is especially important to guarantee continuity in the financial support of development projects and in further development of the guidelines and especially the technical legislation and standards.

Access to information and communication

The UN asks all states to undertake measures to ensure access to information and communication to all persons with disabilities. Access to information on their own environment and possibility to social involvement are basic prerequisites for full participation, social activity and the development of true control over one's own life.

Accessibility of information and communication include at least the following points:

• Persons with disabilities (and their families) should have access to information on treatment, research, rights, services and programmes.
• There exist development programmes for appropriate technol- ogies to provide information services and documentation accessible for persons with visual impairments, auditory impairments and mobility impairments.
• The use of sign language is ensured in the education of deaf children and more extensively in services provision.
• Also the needs of people with other communication disabili- ties must be considered.
• The media, especially television, radio and newspapers should be made accessible to all; new computerized informa- tion and service systems should be adapted to be accessible to users with disabilities.
• Organizations of persons with disabilities should be consulted when information services are being developed.

There are many kinds of impairments that cause difficulties to or prevent communication and access to information. Examples of these are auditory and visual impairments, deaf-blindness, aphasia, dysphasia, autism, intellectual disabilities, cerebral palsy, stammer and brain injuries. They make more difficult or they totally prevent communication and exchange of information between persons in an ordinary way. For this reason, persons with communication disabilities are a group which is particularly discriminated against and marginalised in our society. Without suitable methods and instruments of communication, they will not be understood in matters relating to their own affairs.

Yet, the right to become heard and understood is one of fundamental human rights. During the parliamentary process on the Finnish constitutional reform, the Permanent Constitutional Committee added into the text of the Constitution Act a new paragraph 14, according to which the rights of persons using sign- language and of persons in need of interpretation and translation services because of disability will be protected by Act or Decree. On this basis, each group of disabled persons must be secured to have some way of access to information and self-expression. Deaf persons must be offered a possibility to communicate by using the sign language, blind persons the right to use braille in written communication, for those with difficulties in reading and conception in simplified text and for those with speaking disabilities through other speech-supporting or speech-replacing methods.

To improve the communication possibilities of all groups of persons with disabilities, the use of existing information and other techniques should be made more efficient. Different communications-related technical aids should be made available to all those needing them. Equipment should be provided for individual use and placed in sufficient numbers to locations deemed necessary by persons with disabilities. For example, induction coils and text telephones should be made available in public buildings. Alongside visually-functioning communication instruments, speech synthesizers and reading televisions should also be available. The number of television and radio programmes whose contents are in simplified form should be increased. The same applies to the relative amount of all subtitled and sign- language programmes in television and video. Furthermore, the personnel in services should be trained in communication with persons with different kinds of disabilities.

3. Rehabilitation possibilities

The states should ensure the provision of rehabilitation services to persons with disabilities in order for them to reach and sustain their optimum level of independence and functioning. The states should develop national rehabilitation programmes for all groups of persons with disabilities. These programmes should be based on the actual individual needs of persons with disabilities and on the principles of full participation and equality.

In Finland, rehabilitation is conceived to include all measures aiming at managing physically, functionally or socially. This is a process that sustains or strengthens the attained level of functioning or which helps to find new capabilities. Generally, rehabilitation is a process where the instruments and methods suitable at the given time and for the given individual or their family are used.

For some groups of persons with disabilities, rehabilitation is a continuing activity within the daily life. For others, it is a one-time event, which will not necessarily repeat itself during their lifetime. Some individual persons or groups with disabilities need rehabilitation in all these sectors. Others need it only in some particular areas.

To realize the principle of full participation, persons with disabilities and their families should be able to participate in the design and organization of rehabilitation services concerning themselves. Now, rehabilitation services are often directed from the outside and defined by the systems of financing and the professional personnel. In their organization, only the knowledge is valued that is based on professionalism, not the knowledge based on experience. This is why a change is necessary in the ways of thinking and acting.

From the idea of rehabilitation, we must move towards a more subject-centered thinking of "self-rehabilitation". Then the centre of activities is the person with disabilities himself or herself as he or she is or is capable of becoming through rehabilitation, starting from his or her own needs. The aim is not to mould the person into a nondisabled person. Instead, he or she has the right to be him- or herself. Since the person with disabilities him- or herself knows best what good quality of life means just for him or her, it is he or she who sets the goals for the rehabilitation. This also means the increase of the person's own responsibility over the results of rehabilitation.

During the early stages of illness/disability, when a person has limited capabilities to outline his or her own life or to take the responsibility for it, then an outside motivator, a rehabilitation professional is necessary. The most important task for the motivator is to bring available right information and assistive devices to support the rehabilitation process. Thus, they promote the person_s rehabilitation and learning of new skills in replacement. By no means, shall the outsider set the criteria along which the person with disabilities is moulded. Individual growth must be allowed sufficient room for. Further, the growth of the person with disabilities as a person with disabilities shall be supported by the ways of peer support and peer counselling. Their proportion in the rehabilitation process must be increased from the present levels.

The person in rehabilitation as a part of the community

The individual always lives as a member of a community built upon a set of multidirectional relationships. Therefore, the individual_s rehabilitation must be woven into an integral part of communication and everyday activities of this community, as well. In the ideal case, the whole community is involved in a supportive role in the rehabilitation process of a person with disabilities. Then, the family, the school and the workplace have a chance to renew and adapt themselves in a way considerate of the needs of the person with disabilities.

Not yet does the system which produces the rehabilitation services in Finland sufficiently involve the environment in the rehabilitation process. The system is both in its way of thinking and its practices very institution-centered. It isolates the person with disabilities away from his or her own life circles for the duration of the rehabilitation. Learning even minor skills of ordinary life requires one to participate in a rehabilitation period in an institution. In the future, rehabilitation services should be organized when appropriate in the life environment of each individual with disabilities so that the near community is also involved: one rehearses moving around in one_s own environment, learns the use of assistive devices there etc.

The above-mentioned does not mean that the institutions producing rehabilitation services would become unnecessary. Both those who have recently become disabled and those who have progressive diseases may need a period of institutional rehabilitation even several times a year. A sufficient amount of high-quality rehabilitation services, which meet the needs of those persons, must be made available to them. As for the other activities, there is reason to develop rehabilitation units into resource centres. Then they could act as producers of services demanding special skills and expertise, such as assistive devices technology. Based on these skills and expertise, it is appropriate for the resource centres to organize courses directed to persons with disabilities to teach skills necessary in the use of assistive devices. In addition, the centres can act as trainers of the regional and local rehabilitation personnel. Then their services would provide purposeful support to the Òeveryday rehabilitationÒ taking place in the field.

For this development to become reality, should the prerequisites for their continued action be ensured for these centres. For persons with disabilities, the right must be secured to acquire the necessary skills through participating in courses at the centres or other training. Thus, the state should answer for the costs of rare or expensive rehabilitation needs.

Quality of life as a goal

In developing the rehabilitation services for persons with disabilities, the equal rights of all groups with disabilities to improve their quality of life shall be secured. Special attention must be paid to the rights of persons with retarded development, with mental health problems or with multiple disabilities to have rehabilitation. For them, alternative modes of rehabilitation must be found and the necessary financial resources must be secured. These groups are easily left outside rehabilitation activities based upon finances-centered benefit thinking. Further, the rights of Swedish and Sami-speaking citizens to have rehabilitation services provided in their own mother tongue must be secured.

In no stage, must the rehabilitation process turn into a goal. A person with disabilities needs not to live for rehabilitation, but he or she should have the right to rehabilitation to live. From this basis, rehabilitation services should form a whole and active process to improve a person_s life situation. Rehabilitation should offer support and information according to the needs of the person for an inventory of his or her life situation. At their most concrete, rehabilitation services can provide a chance for training independent living, or physical capabilities or speech etc. Rehabilitation may also include different types of education or the learning of a new profession. Both the goals and the methods of rehabilitation should be open to flexible adaptation during the process, for instance as independent living training turns into job coaching. In order to ensure the flexibility of this process, follow-up methods should be developed, so that the course of events could be corrected through them.

4. Support services

It is the primary duty of the society to organize its general services so that they are accessible to all citizens. The support services only come in as a secondary choice. In the organization of the support services, the principle followed must be that they are realized by and within the ordinary service organizations.

When the general services are not sufficient to secure the full participation of disabled persons, the state should ensure the availability of assistive devices and support services for the persons with disabilities. On this basis in Finland, a disabled person has the right to services and assistance in accordance with the Services and Assistance for the Disabled Act. This right is enforceable when the disabled person does not receive sufficient and suitable services or benefits under any other act. The purpose of the Services and Assistance for the Disabled Act, according to its Section 1, is to improve the ability of a disabled person to live and act as a member of society in equality with others. Another purpose is to prevent and to eliminate the disadvantages and obstacles caused by disability. According to Section 1, subsection 2 of the Support and Assistance for the Disabled Decree, the services and support measures needed by disabled persons shall be arranged so that these measures support the self- sufficiency of disabled persons in their daily lives. The services shall be provided of a content and on a scale that meets the need (Services and Assistance for the Disabled Act, Section 3). To ensure the equalization of opportunities, the persons with disabilities should themselves be involved in the design and production of services and support measures. The support services include e.g., the following services:

• Information and counselling services
• Services related to the adaptation and flexibility of the environment
• Services related to assistive devices and equipment
• Individual assistive devices and equipment as well as other services (such as personal assistants, interpreters etc.)
• All such individually adapted services that a person with disabilities needs to participate fully into the life of his or her community.

In cases where special expertise is needed, it should be possible to take advantage of the top-level special professional skills available in major university hospitals or resource centres. Especially, persons with rare disabilities should have the possibility to use the services of resource centres, such as top- level expertise on high technologies. Although the resource centres were maintained by disability organizations or other private parties, the state should take the ultimate responsibility of securing the prerequisites for their activity.