30.11.1999

IV Implementation measures

Finland has also adopted the UN Standard Rules and is thus morally committed to their implementation. This is the reason why we have divided the actions to be taken for the equalization of opportunities for persons with disabilities following and adapting the division of the UN Standard Rules as follows:

• 1. Policy-making and planning
• 2. Legislation
• 3. Economic policies
• 4. Information and research
• 5. International cooperation
• 6. Participation in the international monitoring and evaluation of the UN Standard Rules
• 7. National coordination and monitoring
• 8. The role of the organizations of persons with disabilities

1. Policy-making and planning

The UN Standard Rules state that the states should ensure that disability aspects are included in all relevant policy-making and national planning. For this, the states should initiate and plan adequate action programmes for persons with disabilities. The states should also stimulate and support action at regional and local levels. The needs and concerns of persons with disabilities should be incorporated into general development plans and programmes of national, regional and local level. They should not be treated separately. The question here is to increase sectoral responsibility.

The ultimate responsibility of the state for the equalization of the situation of persons with disabilities does not, therefore, relieve others of their responsibility. Anyone in charge of services, activities or the provision of information should be encouraged to accept responsibility for making such programmes, especially political ones, available to persons with disabilities. For this reason, the political awareness of disability issues should be raised in all levels of societal action. Without an increase in awareness among the various sectors and levels of administration and the resulting commitment to the issue, we would not be able to achieve the sought-for results.

Organizations of persons with disabilities should be received in all decision-making relating to plans and programmes concerning persons with disabilities or affecting their economic and social status. No planning or decisions should be made without hearing those concerned and considering their views. To ensure this, opportunities for negotiations and hearings should be organized. The National Council of the Disabled is with the organizations of persons with disabilities in a contact with the decision-making authorities. In practice, the hearings and negotiations could become cooperation with MPs. The discussions with the MPs should be included in the normal routine of the Parliament.

The opportunities of persons with disabilities to influence the political decision-making has been improved by, e.g., the introduction of the home vote. Home voting is possible in municipal, parliamentary and presidential elections (Act on the Elections of Members of Parliament 391/1969, Act on the Elections of the President of the Republic 1076/1991, Act on Municipal Elections 361/1972).

The new Municipalities Act (365/1995) governing the actions of municipalities entered into force 1.7.1995. One essential purpose of the act is to improve the possibilities of citizens to influence. The purpose is to create the prerequisites for direct citizen participation. Particularly important is to involve the users of municipal services and minority or opposition groups in municipal activity. The Act gives direct basis for the cooperation between municipalities and organizations; one form of direct participation and influence is the municipal council on disability. One task of the organizations of persons with disabilities is to encourage and train their members to join in municipal politics.

2. Legislation

According to the Constitution Act of Finland (969/95), citizens of Finland are equal before the law. Section 5 of the Constitution Act includes a general antidiscrimination clause in subparagraph two, which rules that without acceptable grounds, no one shall be placed in a different position because of, e.g., state of health and disability. Also the reform of the Finnish Penal Code (in 1995) includes a prohibition of discrimination on the basis of disability. The National Council on Disability proposes that a report be made on the needs to amend earlier legislation in the context of the equality of persons with disabilities.

The thinking SOCIETY TO ALL must be included in all legislation. The states have a responsibility to create the legal bases for measures to achieve the objectives of full participation and equality for persons with disabilities. This is the reason why national legislation, embodying the rights and obligations of citizens, should also include the rights and obligations of persons with disabilities. National legislation concerning persons with disabilities may appear in two different forms. The rights and obligations may be incorporated in general legislation or contained in special legislation. In order to achieve equalization of opportunities, it may be in some cases necessary to have special services and complementary services as well as subjective rights to ensure their availability. It is often necessary to legislate the realization of these rights in a special procedure. However, special legislation should only support/complement other legislation. It should never become the only practice.

Apart from promulgating legislation, the state is under an obligation to enable persons with disabilities to exercise their rights and obligations on an equal basis with other citizens. These include human, civil and political rights. In this, Finland should involve the cooperation of organizations of persons with disabilities and their families. The organizations should be able to participate in the development of national legislation concerning the rights and duties of persons with disabilities and in the ongoing evaluation of that legislation and its realization in practice.

3. Economic policies

The UN Standard Rules state that the states have the financial responsibility for national programmes and measures to create equal opportunities for persons with disabilities. This is why they should include disability matters in regular budgets of all national, regional and local government bodies. They should also consider the use of economic measures to stimulate and to support equal participation of persons with disabilities in society.

The UN lists as economic measures loans, tax exemptions, earmarked grants, special funds and so on. With special funds the states could support various pilot projects and self-help programmes with the aim of promoting independent living for persons with disabilities. The states, nongovernmental organizations and other interested bodies should interact to determine the most effective ways of supporting projects and measures relevant to persons with disabilities.

In Finland, municipalities enjoy an extensive political and economic autonomy. Municipalities are for all their residents, and persons with disabilities are members of their municipalities, too. Their status is influenced by both the general and the special legislation. Municipalities follow the legislation through their decisions on budgeting. The responsibility over the arrangement of social security and health care services lies with the municipalities. There may be differences in these activities between municipalities according to the local conditions and the needs of the population. Private services production complements the services.

It is the strategy of the Ministry of Social Affairs and Health to ensure availability of social security and health services in an equal and diverse way in all parts of the country. The purpose of graded services according to need is to maintain and promote the health and self-sufficiency of the citizens. Services that are qualitatively good will be organized with the resources available. The services charges should not become unreasonable, the necessary services must be available to the citizens regardless of their social or economic situation.

The cutting of welfare services poses a threat to the well-being of many marginalized groups. Particularly weakened are the living conditions for those who have meagre economic, functional and social resources at their disposal. The state and the municipalities must become aware of their responsibility towards small groups, such as persons with severe disabilities, in providing the necessary services. The relocation and privatization of services must not mean weakening their availability. The state and the municipalities should clarify their mutual division of responsibilities with the private sector for the appropriate and economic organization of services e.g., the traffic services. It is essential that the availability of more rarely necessary and expensive services be ensured in cases when these are necessary for the equalization of opportunities for persons with disabilities. In Sweden, for instance, to ensure equality, the state assumes a great responsibility over the costs of making the personal assistant -system available for persons with severe disabilities.

The organizations of persons with disabilities have pointed out that the transfer of decision-making to the local level brings persons with disabilities who are residents in different municipalities into a position of inequality as service users. Resources are not always adequate or appropriately targeted. In addition, the increased introduction of markets-based models in the production of welfare services has brought new elements of insecurity. When organized in the new way, many services reveal themselves to be inappropriate to some client groups or the service charges rise too high. There are variations to the quantity, contents, quality and costs of services.

The National Council on Disability has repeatedly dealt with the concern that while we are transferring responsibility over income, social security, the acquisition and costs of health care and other services back to the individual citizens themselves, the opportunities of persons with disabilities to have the services which are vital for them, are put in considerable danger. The increasing number of service charges weakens the long-term consistency of the most important areas of human life, namely coping with everyday life, health care and the treatment of illnesses. Disability causes extra costs. The service charges accumulate to those persons who need the services the most. The burden of costs caused by disability should not be left for the person with disabilities to carry alone. One alternative would be to determine a maximum level of service charges.

In the determination of service charges, the starting point should be the principles of justice and the equalization of opportunities. According to them, persons with disabilities should not have to carry any more costs of everyday coping and of participation in social life than what similar activities cost for other persons.

4. Information and research

According to the UN Standard Rules, the states should assume the ultimate responsibility for the collection and dissemination of information on the living conditions of persons with disabilities and for the promotion of comprehensive research on all aspects that affect the life of persons with disabilities. They should take measures to disseminate the collected information to the different political and administration levels nationally, regionally and locally. While information collection and research are undertaken, the states should particularly encourage the recruitment of qualified persons with disabilities. This would require that study and work environments are accommodated to meet their needs.

Disability-related information should be collected from gender- specific statistics. This kind of data collection could be conducted in the context of national censuses and household surveys, in close collaboration, inter alia, with universities, research institutes and organizations of persons with disabilities. However, the normal data collection should include some questions on the living conditions of persons with disabilities. This is essentially important for the surveys over the opportunities of persons with disabilities. Although the municipalities no longer have an obligation to report to the state over their use of appropriations from the state, should the municipalities which still receive them be obligated to monitor the living conditions of persons with disabilities.

The states should consider establishing a data bank on disability, which would include statistics on available services and programmes as well as on the different groups of persons with disabilities. They should bear in mind the need to protect individual privacy and personal integrity.

The Finnish Committee of the UN Year of Disabled Persons 1981 has proposed the setting up of a Centre of disability-related studies, training and information within the framework of the National Council on Disability. This project has not yet been realized and this would require a further allocation of funds into the activities of the Council. In the future, the need for coordinating and monitoring the research on disability will be even greater; it should have sufficient resources both economic and human capital ones.

Though the coordination and the monitoring of information should be centralized, it is necessary that disability-related research is done in a decentralized way within the general research institutions. The different scientific branches, universities and research institutions should be involved in this research. A purely medical, technical or economic approach is not enough. Neither should the research have an outside perspective of targets or anomalies. What is needed now is rather environment and social research with a broader perspective onto the lives of persons with disabilities.

The research funding should come from ordinary sources, too. Then we can ensure the ties of disability-related research with other scientific activities. The Academy of Finland has a significant position in the funding of scientific research. It should ensure for universities and research institutions the possibilities to conduct high-quality research on disability. Based on the above, the state should initiate and support various research programmes on disability issues in different institutions. The research should be concentrated on the economic and other questions related to the participation of persons with disabilities and their families. The research should also include surveys over the causes, types and frequencies of disabilities; the availability and efficiency of existing programmes and the need of development and evaluation of services and support measures. To create uniform and comparable research practices and results, should the interested bodies create and approve the terminology and criteria used in national surveys and other research work. This must be done in cooperation with the organizations of persons with disabilities.

5. International cooperation

The UN Standard Rules require the states to participate actively in international cooperation concerning policies for the equalization of opportunities for persons with disabilities. This includes e.g., the development of disability policy within the United Nations, the specialized agencies and other concerned intergovernmental organizations. In order to create the conditions for cooperation, it should be ensured that the United Nations and its specialized agencies include in their work the global and regional organizations of persons with disabilities. This requirement also covers all intergovernmental and interparliamentary bodies, at global and regional levels. The states are also encouraged to support the formation and strengthening of organizations of persons with disabilities.

In order to ensure frictionless cooperation between the different parties, Finland, too, should encourage and support the exchange of information among the following:

• Nongovernmental organizations concerned with disability issues;
• Research institutions and individual researchers involved in disability issues;
• Representatives of field programmes and of professional groups in the disability field;
• Organizations of persons with disabilities
• National coordinating committees.

The states, both industrialized and developing countries, have the responsibility to cooperate in and take measures for the improvement of the living conditions of persons with disabilities in developing countries. These measures should be integrated into all forms of cooperation: technical and economic, cultural and social etc. It must be a part of both bilateral and multilateral, governmental and nongovernmental cooperation. Priority areas for cooperation should include:

• The development of human resources through the development of skills, abilities and potentials of persons with disabilities and the initiation of employment-generating activities for and of persons with disabilities.
• The development and dissemination of appropriate disability- related technologies and know-how. Further, the states should take measures to improve the knowledge of disability issues among staff involved at all levels in the administration of technical and economic cooperation programmes.

The disability issue should be brought up in discussions on such cooperation between Finland and other states. The disability aspects should be introduced in general negotiations concerning new standards, information exchange, development programmes etc. The measures concerning the equalization of opportunities for persons with disabilities, including refugees with disabilities, should be integrated into general development programmes.

When planning and reviewing programmes of technical and economic cooperation, special attention should be given to the effects of such programmes on the situation of persons with disabilities. It is of utmost importance that persons with disabilities and their organizations are consulted on any development projects designed for persons with disabilities. They should be directly involved in the development, implementation, and evaluation of such projects.

Also the Department of Development Cooperation at the Ministry of Foreign Affairs should change its line of international policies insofar as it concerns persons with disabilities. Common lines based upon the UN Standard Rules should be found for the activities. In addition, the Finnish Slot Machines Association should review its position concerning international cooperation. The international activities of national organizations of persons with disabilities have been increasing and will continue to do so. Also, Finnish organizations will more often act as hosts for international activities. Financial resources for this activity should be available; the Finnish Slot Machines Association could direct funds to the organizations for this purpose.

6. Participation in the international monitoring and evaluation of the UN Standard Rules

The realization and monitoring of the UN Standard Rules require the following measures:

• Information about the Standard Rules for the administration and the field
• Clarifying the living conditions of persons with disabilities in relation to the Standard Rules
• Choice of strategies and measures:
  • the strengthening of the organizations of persons with disabilities
  • the creation of a legal basis for the realization of the Standard Rules
  • the maintenance and strengthening of councils on disability
  • the preparation of national action programmes through open debate
• to take action in the sectors (education, working life, legislation etc.) from the perspective of the needs of persons with disabilities.

7. National coordination and monitoring

States are responsible for the establishment and strengthening of national coordinating committees, or similar bodies. They should be permanent and based on legal as well as appropriate administrative regulation. They should be provided with sufficient autonomy and resources to fulfill their responsibilities in relation to its decision-making capabilities. It should report directly on its activities and results to the highest governmental level.

In order to make the committees functioning and diverse in their composition, they should be drawn from the combination of representatives of private and public organizations. The members should be drawn from the various ministries, nongovernmental organizations and organizations of persons with disabilities. However, the organizations of persons with disabilities should have considerable influence in the committees in order to ensure proper feedback in disability issues.

In addition to ensuring coordination, the states are responsible for the continuous monitoring and evaluation of the implementation of national programmes and services concerning the equalization of opportunities for persons with disabilities. The evaluation of various programmes in the disability field should be built in the planning stage. This would have the result that the overall efficiency in fulfilling the policy objectives could be evaluated.

The states should periodically and systematically evaluate national disability programmes and disseminate both the bases and the results of the evaluations. They should also develop and adopt terminology and criteria for the evaluation of disability-related programmes and services. Such criteria and terminology should be developed in close cooperation with organizations of persons with disabilities. This should begin from the earliest conceptual and planning stages. The states should also participate in international cooperation in order to develop common standards for national evaluation in the disability field. The national coordinating committees should be particularly encouraged to participate also. In Finland, the coordination and monitoring of disability issues is largely the responsibility of the National Council on Disability (in Finnish VANE). Different administrative bodies and organizations of persons with disabilities are represented in this Council. However, the resources still remain insufficient for any comprehensive coordination and monitoring. Apart from only encouragement, the council should be awarded more support in terms of financial and personnel resources so that it could meet the expectations.

What is the role of the National Council on Disability in the field of sectoral responsibilities? At present, the Council belongs under the purview of the Ministry of Social Affairs and Health. For the Council to be better able to answer the expectations and challenges facing it, it should be transferred directly under the Prime Minister's Office. This was the original plan already at the time of the formation of the Council. This would also make its cooperation easier in the direction of the various ministries and other administrative bodies.

8. The role of organizations of persons with disabilities

Finland should encourage and support economically the formation and strengthening of organizations of persons with disabilities, family members and/or advocates. Finland should also recognize the right of organizations of persons with disabilities to represent persons with disabilities at national, regional and local levels. The position of local organizations of persons with disabilities should be developed and strengthened so that they can exert their influence on a community level. The position and resources of municipal councils on disability should also be improved.

The state should recognize the advisory role of organizations of persons with disabilities in decision-making on disability matters and in the development of disability policy. To ensure this, the state should establish ongoing communication with organizations of persons with disabilities and ensure their participation in the development of government policies. The role of organizations of persons with disabilities as equal partners in negotiation with the administration should be acknowledged. The state also has the obligation to provide the organizations with information on legislative changes and other matters related to persons with disabilities already when these are still in the preparatory stage.

In order to the organizations of persons with disabilities to play their role as a serious force in the society, they must find stronger ways of cooperation and mutual solidarity. Both on national and regional level, the cooperation bodies between organizations of persons with disabilities can significantly increase their influence and improve the dissemination of information on disability-related information.

Advisory work is one of the most essential tasks of organizations of persons with disabilities. They should enact this role in many different ways. They should seek permanent representation on boards of government-funded agencies, serve on public commissions etc. and providing expert opinions on different projects. The expertise based on experience that the organizations can offer must be brought alongside professional knowledge. The advisory role should be ongoing in order to develop and deepen the exchange of views and information between the state, the municipalities and the organizations of persons with disabilities. Through this role, the organizations of persons with disabilities could bring forward the needs of persons with disabilities and issues important to them. Similarly, they could participate in the planning, implementation and evaluation of services and measures concerning the lives of persons with disabilities. Then they could also contribute to public awareness and advocate change.

Apart from influencing society, the organizations of persons with disabilities should also promote opportunities for the development of skills at the level of the individual person with disabilities. They should encourage persons with disabilities to provide mutual support and should improve information sharing as a way to increase self-sufficiency.

The Standard Rules put the organizations of persons with disabilities facing many other challenges, as well:

• the organizations should find the "common ground" related to disability and develop their cooperation and joint advocacy work from this basis. This would make persons with disabilities into a group to be reckoned politically.
• the organizations should focus their attention in the field: to encourage and train persons with disabilities to advocacy work in their own community.
• the organizations should promote the development of peer counseling and independent living.
• the organizations should recruit persons with disabilities to their own activities and place them in positions of representing the organizations externally.

The organizations of persons with disabilities should join their resources to reach the goal of equality and the equalization of opportunities for persons with disabilities. This can be done in the following ways by adapting nationally the UN Standard Rules:

• The organizations should seek information about the UN Standard Rules.
• They should find out which government body has the central role in the realization of the Standard Rules.
• The organizations should be in communication with this body.
• The organizations should collect information.
• The organizations should also disseminate information.
• In disseminating information, all possible media channels should be used.
• The organizations must know what they are talking about.
• It is also important to coordinate the work with other organizations.
• The organizations should cooperate at all levels.
• The organizations should keep the UN Special Rapporteur informed about the situation in Finland.