Presentation by Arthur Verney
Development Worker, Disabled Peoples' International - European Union Committee
at the ENIL Meeting in Stockholm, 10 June 1996
Today I have been asked to speak to you about EU programmes with relevance to persons with disabilities', and have decided to do this in three parts: first, to examine the situation of disabled people within the European Treaties; secondly, to explore possibilities for influence on the part of disabled people's organisations; and lastly to discuss some EU programmes that might be of relevance to disabled people's organisations.
In the first part where we examine the situation of disabled people within the European Treaties, I have drawn heavily on material published in 'Invisible Citizens', a Report published for last year's European Day of Disabled Persons.
In December 1995, to mark the European Day of Disabled Persons, a report on discrimination against disabled people was published and a major conclusion was that "One of the most frequent human rights violations against disabled people is the experience of disability-based discrimination in all fields of everyday life... including in the countries of the European Union which are regarded as highly developed."
We are the 'invisible citizens' of the European Union. At present there is no mention of disability in the Treaties on European Union, and the existing provisions of citizenship in the Treaty do not adequately protect us from discrimination. Disabled people cannot exercise the rights currently granted to non-disabled citizens, for example, freedom of movement for workers, right to receive services and purchase goods, and in many Member States disabled people are denied the fundamental political right to vote.
The existing Treaty does address discrimination in Article 6, but only on the grounds of nationality, and in Article 119 on the grounds of gender. Article 6 provides some protection for a disabled migrant, but it is only as good as that which is available to a disabled national in the host Member State. It does not oblige Member States to adopt national laws to eliminate discrimination on the basis of disability. Similarly, Article 119 is only as good as the level of equal treatment provision in a Member State. Where levels of support are equal between men and women but less than adequate and where no provision exists for independent living, then the article is of little help to disabled people.
Where the Union has introduced policy in relation to disabled people, the majority of it has been confined to the areas of vocational training and employment. Of course, this is because the Union was founded as an economic community. Amendments within the Maastricht Treaty did give the Union some additional limited powers in other areas, such as education and culture, but did not address such major issues as disabled people's civil rights. Furthermore, the competence of the European Union remains fairly limited in other areas which are of special interest and concern to disabled people, such as health, social affairs and human rights. We see the European Union march ahead on the road of economic and political union, but along the way disabled people are rarely the beneficiaries, our rights and freedoms are constantly being ignored or overlooked.
Up to now the European Union has tended to use non-binding measures in relation to disability policy, and these have proved to be less than effective. Yet the Union continues to use this approach. The European Commission has decided to introduce a communication on measures to remove barriers to discrimination facing disabled people, and a recommendation concerning implementation of the UN Standard Rules on the Equalisation of Opportunities for People with Disabilities. The Commission has perhaps been forced to take this action because it cannot find a basis within the present Treaty for a binding legal instrument.
Disabled people have been both ignored and discriminated against when the Union has been harmonising its laws. Proposals for legal instruments concerning lifts, buses, and driving licences in their draft form failed to integrate disabled people as full citizens. The current draft Directive on Buses and Coaches still does not contain a clause making access for disabled people mandatory; this is even after representations have been made by disabled people's organisations showing the benefits to a vast cross-section of the population including parents with baby carriages and elderly people, and the cost benefits to the operators. We believe that when the Union is harmonising its laws it must legislate to ensure full accessibility.
The creation of the European Union may eventually have significant advantages for us in areas such as technical standardisation and harmonisation and in the free flow of services and goods such as assistive technology, but we need also to address another dimension because in many Member States we continue to be excluded from mainstream society. We are isolated from our non-disabled peers at school, and later, at work, and this pervasive discrimination is widespread; rarely is there recourse to legal redress or any legal means to protect the victims.
There are sound reasons to justify the Union's intervention to combat discrimination against disabled people. Although action programmes such as HELlOS have helped to improve our position in the European Union, these measures tend to be exemplary, rather than regulatory. No-one can argue that examples of good practice are worthwhile, but surely these should become a priority only after we have achieved recognition in law of our human rights, unfortunately we are a long way from achieving this goal.
Discrimination causes severe disadvantage, deprivation and poverty for millions of disabled Europeans. It is estimated that disabled people are two or three times more likely to be unemployed when compared with the general population. By denying us access to training and employment, we are denied the means of achieving social status and financial independence. Discrimination does not end if people are employed. A 'Symposium on Labour Law and Employment' held in Brussels during October 1994, concluded that in Europe, 400,000 disabled people working in sheltered, supported or open employment are discriminated against by having no proper employment contract and being outside the current employment legislation. Not only do such workers lack protection at a national level, they will often not qualify for rights granted to workers under European legislation.
Where we are denied access to society's infrastructures, we are made to feel isolated and unsupported. In one survey, a fifth of disabled people had difficulty getting out of their own homes, and the principle of 'free movement' which non-disabled people have is not possible for many disabled Europeans. Restrictions are all too common, such as not being able to obtain travel insurance, the existence of barriers to leisure, and to other facilities and consumer products, and obstacles to disabled people and their families in travelling to work or settling in other Member States. If discrimination in all its forms were removed, new opportunities in our lives would become a reality, and the quality and standard of everyday living would be dramatically improved.
But how are we to achieve this? At the national level we have to continue lobbying for non-discrimination legislation where this has not already been introduced. At the European level we must do the same, but first and foremost we must fight to achieve a legal basis within the European Treaties for non-discrimination measures to protect disabled people. In December 1995, to challenge discrimination against disabled Europeans, disability organisations adopted the following resolution: "Discrimination against disabled people is pervasive throughout the European Union; such discrimination is in breach of the human and civil rights of disabled people and the fundamental freedoms guaranteed by the European Treaties, active non-discrimination measures are required at regional, national and European levels; the lack of any reference to disability in the European Treaties limits the effectiveness of the European Union in promoting non-discrimination principles. The commitment of the European Day of Disabled Persons in 1993 to the inclusion of a clause in the main body of the European Treaties is re-affirmed." These same organisations are working towards the inclusion of a non-discrimination clause within Article 6 of the Treaty and they have the support of other institutions and bodies. In its White Paper on European Social Policy, the European Commission has proposed that serious consideration should be given to the inclusion of a non-discrimination clause during the review of the Treaties by the Intergovernmental Conference - the IGC. This action is supported by both the European Parliament and the European Disability Forum. Furthermore, after representations had been made by Johan Wesemann, Chair of the Disability Forum to the Chair of the Reflection Group, the Reflection Group's final report also stated some support for a non-discrimination clause on the grounds of disability. As you will know, the Intergovernmental Conference comprises the Foreign Minister from each Member State and to achieve our goal for a revision of the Treaty requires unanimity within the IGC. At present there are at least three Member States who are opposed to the inclusion of a disability non-discrimination clause
How should we then proceed when we are eventually successful in our fight to achieve a legal base within the Treaties, and we will be? The Commission, which has the responsibility for initiating Union legislation, can propose three forms of binding instrument - regulations, directives and decisions. A 'regulation' on a specific subject supersedes any national law; a 'directive' allows Member States to introduce their own national law based on the objectives laid down at European level; and a 'decision' is only binding on those who are named within the instrument.
It has been suggested that once we have achieved our objective of having a legal basis within a European Treaty, we should be aiming to have a directive introduced and implemented. In this way, at the European level, we could ensure that a clear definition of discrimination against disabled people was introduced and also ensure in which areas national laws should operate. Member States would then be free to decide how the objectives would be achieved within any national law, and by using a directive, different social, cultural, political and legal systems would be recognised and respected. The European dimension would also ensure that protection would be given to disabled people through redress at the European Court of Justice, that disabled people are afforded equal rights and opportunities throughout the European Union, and that the needs of disabled people would be given full and due consideration when the Union harmonises its laws.
I would now like to turn to the second part of my presentation - 'possibilities for influence on the part of disabled people's organisations'. It is helpful to examine the historical context when attempting to appreciate the role of European disabled people's representative non-governmental organisations
Although the European Economic Community (EEC) was formed in 1957, it was not until 25 years later, shortly after the end of the International Year of Disabled People in 1981, that the then EEC introduced the first action programme on the integration of disabled people. Prior to this, one or two NGOs had benefited from small amounts of funding from other actions such as the Youth Programme, but generally disability per se had been ignored. The first action programme on the integration of disabled people provided an opportunity for NGOs - primarily those which already had an international dimension, for example the World Blind Union and the World Federation of the Deaf - to meet and form European Community networks. Small amounts of funding usually 5,000 - 10,000 ECUs, were made available to them to do this. At the same time the European Commission held meetings of these NGOs with the aim of developing the framework and focus for the second action programme.
It can be seen that generally the impetus for cooperative NGO activity came from the European Commission, and not from the NGOs themselves. Also, the bases for development tended to be the medical model of disability underpinned by a social welfare approach. However, the Head of Division at the time, Pat Daunt, was a great believer in the right of disabled people to represent themselves, and he did all he could to support directly representative organisations OF disabled people.
As you can imagine during this gestation period the small group of European NGOs in existence at that time concentrated their efforts on establishing themselves as viable organisations and on agreeing internal policies concerned with a particular impairment. For example, in 1987 ECRS, the newly formed European Deaf organisation, held a major conference in Athens on the education of deaf children and published its Education Charter. Overall the NGOs did not operate as one unit and therefore did not address major cross-disability issues, either at a policy or at parliamentary level. Meanwhile, the European Commission had set up local model activities in cooperation with Member States, but only a very few disabled people or their NGOs were involved, and once again the focus was very much on the traditional medical model, individual rehabilitation and social welfare approach.
In 1988, the second 4-year action programme started - this was the HELlOS I programme. The objectives of HELlOS I had been drawn up by the European Commission with minimal consultation with European NGOs. However, this second action programme did for the first time establish a Liaison Committee, where 12 European NGOs selected by the Commission sat alongside government representatives from the Member States and Commission officials, and they were able to give their opinion on the various elements of the programme. It was also during this period that the European NGOs began to become a cohesive force. They formed 'NGOs in Consultation', an ad hoc group of European NGOs which met outside the Liaison Committee to determine a common position on a whole range of issues, most of which were items on the Liaison Committee's agenda. It was only by coming together like this could the NGOs' voice be properly heard and opinions taken note of by the Commission. It also gave the European NGOs' a forum in which they could express their solidarity and act as a single body.
At the beginning of HELIOS 1, the budget for NGO activity had been decided at 900,000 ECUs for the first year. It was a considerable increase on the budget of the first action programme, but considered as woefully inadequate by the European NGOs whose number was growing each year, and whose aspirations had been fired by the opportunities presented within the European Community. So much so that the European NGOs conducted their first joint campaign and persuaded the Parliament, which is the budgetary authority, to increase the overall budget of the HELlOS programme, but particularly the budget for NGO activity to 2 million ECUs in 1989, and then again to 3 million ECUs in 1990 and 1991. In 1991 the Europrogramme of the NGOs comprised 150 different activities ranging from study visits to major conferences, covering a range of issues important to disabled people and their families. Furthermore, during the life of HELlOS 1, a few European NGOs moved individually into the political arena; for example in 1988, ECRS, the deaf organisation,, worked with the Parliament to introduce a Parliamentary Resolution on the status of sign languages within the European Community. And in 1989, ECRS successfully challenged the Community's institutions concerning the driving licence directive, which in its draft form had discriminated against deaf drivers.
By the time HELlOS I came to an end, a certain number of leading NGOs began to feel the constraints of being marginalised within a specifically designated disability programme, and without the opportunity of influencing mainstream policies which affected everyday living. A feeling of frustration developed too as the Commission continued to operate its own agenda without the true and full involvement of disabled people. It was also a period in our history when the Disability Movement really began to get its message across concerning the need to move away from the medical model and towards adopting the social model of disability. National umbrella disability organisations, where they existed in the Member States, had seen their European counterparts grow in strength and influence, and they too wished to play a part within the European Community. It was against this backdrop that proposals for the HELlOS 2 programme were put forward by the Commission for consultation. Unfortunately, debates concerning the new initiative were conducted in a climate of conflict - between the Commission, Parliament and the Council, with the NGOs, working with the Parliament, attempting to bring in changes which would give disability organisations a greater say and influence. Eventually, in 1993 - one year after it should have been introduced - the Council's Decision was published and HELlOS 2 started up. Although Parliament had managed to ensure the establishment of a European Disability Forum within the programme, which for the first time involved national councils of disabled people, the philosophical base of the programme still did not recognise disability as a human rights issue or the social model of disability. Furthermore the Commission continued to ignore the NGOs' pleas for a greater involvement of disabled people within the programme as a whole, particularly within the information and exchange activities, and in relation to the development of information services by the NGOs. However, in 1993, there came a turning point, and it was as if overnight there was a recognition by most of the players within HELlOS 2 that disability was a human rights issue, that the social model should be adopted, and that future discussions should be based on the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. The catalyst for this change was a DPI initiative, the European Day of Disabled Persons. I am not a great believer in lnternational days, weeks or years except where they can be used as a 'peg' on which to hang a major initiative or event. And in this case, perhaps the greatest influence was the first European Disabled People's Parliament held on 3 December. Inside the European Parliament's own debating chamber nearly 500 disabled people from throughout the Union, representatives of the Commission and parliamentarians gathered to hear disabled people present their own experiences of discrimination. This had a profound impact, and the resolution adopted by the Disabled People's Parliament has since been acted on by both the Commission in its White Paper on Social Policy, and its medium term social action programme, and by the Parliament in various resolutions and actions. The resolution included requests to the European Commission to outline its plans to initiate Community legislation for the adoption and implementation of the UN Standard Rules; to the Community institutions and the Member States to support studies on human rights of disabled people; and to the Community institutions and Member States to ensure that at the time of revision of the Treaty on European Union ('Maastricht') a general anti-discrimination provision is included.
At the same time that this was happening, the European Disability Forum had elected a disabled person as its Chair, and as a group it was growing in confidence and solidarity. So much so that it decided, with the support of the Commission, to establish an Independent Disability Forum which will have a broader brief than the HELlOS Disability Forum. The aim is that the Independent Disability Forum will be able to be both re-active and pro-active on a whole range of issues, and not be confined to only commenting on matters within the remit of the HELlOS programme. Parliament too welcomes the opportunity to have a dialogue with a truly representative body of disability organisations. NGOs themselves are keen to ensure that disability is no longer marginalised and restricted to just one or two special programmes, and they consider the Independent Forum is the only way in which disabled people themselves can ensure that their particular needs are taken into account throughout mainstream Union policy and legislation, while at the same time recognising it will be an uphill struggle and that both individuals and institutions will not change their behaviour overnight.
The Independent Disability Forum is at the beginning of a new era in the history of disabled people's desire and will to represent themselves. There is a commitment demonstrated within the statutes of the newly formed independent forum to involve disability organisations at all levels, from the grassroots to the European NGOs, and I would hope that ENIL will apply for one of three new places now available. Certainly DPI will support you if you decide to make application. With the new Forum's wide remit there is every chance that we may for the first time be able to look outwards and begin to influence the decision-makers on a whole range of issues which affect disabled people within the European Union. Obviously, the focus of our work will need to be determined by organisations of disabled people at national and European levels, and to do this there must be a role for the new Forum in both providing and receiving information, because, of course, information is the key to empowerment. Relationships will need to be strengthened with the Union's institutions, and we must ensure that arrangements are made for regular dialogue with the Parliament and with the Commission particularly. Our influence will only be effective if it is based on fact and experience, and the new Forum will need to develop a strong team committed to both scientific and empirical research. Finally, the European Disability Movement is now coming of age and it is ready to take on the responsibilities of truly representing disabled people throughout the European Union, but to be truly effective it needs the whole-hearted commitment of disabled people everywhere and their organisations. I am sure it will get it.
In the last part, I would like to examine some EU programmes that might be of relevance to disabled people's organisations, and this is subdivided into programmes specifically designed for disabled people, and other programmes where disabled people might benefit. Here I would like to stress that if you are interested in contributing or benefiting from any Union programme the best way to obtain full and detailed information, including criteria for funding is to go to your national EU information office, and there is one in every capital city within the EU. The information given to you will be up-to-date and will be provided in your national language.
First of all, the HELlOS programme. Most of you will probably have heard of HELlOS and some of you might have been involved in some of its activities, either through another NGO's programme or through the Commission run information and exchange activities. Although of great importance to NGOs operating at the EU level, HELlOS II, with a very small budget of 12 million ECUs a year, is increasingly viewed as needing a total revamp. HELlOS II, the Third Community Action Programme was established on 23 February 1993 and ends on 31 December 1996. Its stated aim is to promote integration of and equal opportunities for disabled people
The Council decision setting up HELIOS II states the Commission will strengthen cooperation with associations which include NGOs from all or a number of Member States. In total there are over 90 European NGOs, which collectively have 1200 national or regional members, and 15 national councils involved in the programme. The European Disability Forum consists of 12 leading European NGOs, 15 national councils (plus representatives from Norway, Iceland and Liechtenstein) and two social partners (employers and trade union representatives).
The role of the 12 leading European NGOs, apart from representing their sector in the European Disability Forum also contains several responsibilities related to the provision of information and coordination. Financial support up to 100% is available to these 12 NGOs for tasks undertaken in relation to their responsibility of sector coordinator. These include providing expertise such as: technical advice and specific information concerning the client group(s) in their sector; with the partners in their sector drafting a Europrogramme and producing an annual report; and consulting their partners on initiatives concerning disability and their client group(s). Eligible expenses are staff costs, office overheads, publication and printing costs distribution costs, translation costs, and meeting expenses, including travel and subsistence.
The 1996 budget for NGOs is 4 million ECUs, and funding applications relating to the annual Europrogramme is open to any disability NGO within the European Union, as long as they meet certain criteria, including: correspondence with an annual priority theme identified for that year; contributing towards the objectives of HELlOS II; involving at least 3 Member States (speakers and participants); having a European dimension; and having a multiplier effect throughout the Union. The type of activities that are funded include conferences, seminars, workshops, study visits, and other innovative initiatives.
I said earlier that HELlOS II comes to an end on 31 December this year, and for various political reasons there is no acceptable legal base on which a further programme can be established. Therefore, an interim measure, possibly lasting two years, is to be adopted. It is hoped that with the Commission and Parliament's support an overall budget of 12 million ECUs will be voted, and that the NGOs will be allocated 5 million ECU for their work and that of the newly formed Independent Forum. The new Forum will have 15 seats for European NGOs, this includes seats for the existing 12 leading NGOs and 3 new seats which are at present vacant.
It is envisaged that within the interim arrangements the NGOs through the Independent Forum, will play a far more pro-active role, and already a working group is putting together a work programme which it is hoped will be more Innovative and will be based on the 'UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities'. I hope that ENIL will consider playing an active role within this new framework, and look forward to working closely with you on this in the future.
I would now like to turn to HORIZON. HORIZON is a Community Initiative within the Structural Funds that includes the European Social Fund and the European Regional Development Fund. HORIZON is a vocational training, retraining and employment programme with a specific focus on disability. That is, the funds under HORIZON can only be used on projects where there is a disability element, so professionals working with disabled people are included too.
Unlike the HELlOS programme where funds are dispersed directly from the European Commission, HORIZON funding, which is substantial, can only be obtained via your national government. There are strict criteria, including the requirement to have two transnational partners who should be carrying out a similar project; government support amounting to 35 - 50% of the total budget, depending in which Member State the projects are situated; and a project which offers training or employment to the long-term unemployed. To date, in this round of HORIZON funding there has been a substantial underspend, particularly by three Member States. Applications are being sought now for funding to begin in 1997. HORIZON is an ideal programme for NGOs seeking to set up national, regional or local Independent Living initiatives, and I would certainly encourage ENIL to explore this further. There are drawbacks, the main one being the delay in receiving payment, so there is a need to ensure resources are available to support the NGO through these lean periods. Another drawback is the need to have matching funds from local or national government.
The third programme, specifically designated for disabled people and including elderly people, is TlDE. This technology-focused programme encourages innovation. To carry out a project three elements are needed: a commercial arm, a research facility and a consumer group. As with most technological innovative projects, some are of direct benefit to disabled people immediately while others have the potential to become so. If you are interested in this area then it would be worth your while asking at your national EU Information Office for a copy of the synopses of previous projects, so that you can get an idea of the type of projects that are funded and the nature of the partners involved.
I mentioned the Structural Funds earlier. These include other Community Initiatives which you may wish to explore too. There is NOW, a programme for women, and Youthstart for young people. When being adopted Parliament insisted that disabled women and young people were given due consideration within the funding criteria. Another area to explore in relation to training and employment is the European Social Fund itself which operates in a similar way to HORIZON but is not specifically for disabled people. Also, if one is considering capital expenditure, for example buildings or equipment, then it is worth discussing with your government the possibility of utilising the European Regional Development Fund.
If one is considering developing teaching or research then funding for exchanges and placements are available under SOCRATES and LEONARDO. The Union's 'Youth for Europe' programme is especially valuable for involving young people in your organisation. And finally, if you wish to extend your activities into Central and Eastern Europe then PHARE and TACIS could enable you to do so. A word of warning though, because the competition for funds is so great the chances of successfully obtaining them are slim indeed. And obviously, before you put in your application it has to be very well researched and presented.
There are many other Union programmes but as I said at the beginning of this section, to have full up-to-date information there is no better place to go than your national EU Information Office - don't forget to ask for your name to be put on their mailing list!
Good luck, and if there is anything that DPI can do to help you further then please contact us.