European Network on Independent Living & The Center for Independent Living Dublin

November 29-30, December 1, 1996

INTRODUCTION TO THE ENIL EXPERTS MEETING

Background

The background to the Expert's Meeting was a meeting of minds of some of the key members of the Center for Independent Living (CIL) Dublin, and the European Network on Independent Living (ENIL). It was a collaborative initiative between the two organisations. There was a consensus of opinion to organise an event that would focus our attention on the current main concerns, in different countries, on the implementation and practice of Direct Payments for Personal Assistance Schemes (PAS). As these schemes were becoming more mainstream in some countries, it was important to ensure that control remained with disabled people and that the philosophy and ethos of the Independent Living Movement was upheld and maintained. The Expert's Meeting affirmed this principle. It also consolidated it by reviewing past experiences in order to establish new platforms for future ENIL work. It was an event that brought together some of the key figures and activists of the Independent Living Movement in order to progress the important issue of Direct Payment schemes at an international level.

During the last few years we have seen disabled people throughout Europe coming closer together in both their struggle to achieve full civil rights legislation and in the acquisition of direct payment schemes for personal assistance. In particular, recently there has also been a concerted effort by a number of European Disability Organisations to get a Non-Discrimination Clause introduced into the EU Treaty, and ENIL has been very active in this issue and campaign. The Expert's Meeting in Portlaoise was another significant step in this direction.

The Meeting focused on three main areas:

• Direct Payments and their further developments, practices, standards and implementation,
• the idea of a European Center of Excellence on Disability Studies (ECEDS) in Ireland,
• the introduction of a Non-Discrimination Clause in the EU Treaty.

During recent times we have seen the value of what we can learn from each other in terms of the practices of Direct Payments. Different countries are at different stages in this process but we can all still gain much from each other in our exchanges, and especially for those in countries who are in the early stages of establishing Independent Living. These are important roles for everybody involved with ENIL.

Direct Payments Significance

No longer do disabled people in Europe need to show and prove the value and purpose of Direct Payment schemes, because in many European countries now these schemes are being well established and incorporated into the social welfare policy systems. New legislation is also being drawn up in some countries to accommodate a workable legislative framework for Direct Payment schemes to operate in. Although laws might differ in each country, alot can be learned and shared. Some of the difficulties of establishing Direct Payments are the same, regardless of the country.

The most important part of this new approach to service delivery for disabled people, is that it brings into sharp focus the necessity for high quality services, standards of practice, satisfaction and lifestyle. This was highlighted in the excellent piece of research into Direct Payments in the UK by Zarb entitled ìCashing in on Independenceî. Independent Living is a dynamic that cannot be left as its development is crucial in the lives of individual disabled people and as a whole in the developmental framework of disabled people's organisations and the ongoing empowering process which in itself is an integral part of Independent Living.

European examples of good practice and differences

As we develop at different rates obviously the standards of Direct Payments schemes will vary in different countries and sometimes even within the same country, so it is important for us to inherit as much as we can from the best parts of those schemes and practices. The Swedish schemes with their strong legislative and professional framework are almost the epitome of excellence and the goal with which to strive for, despite the economic arguments that might be used against us in this pursuit.

In the UK great strides have been made in recent times to open up Direct Payment schemes to all impairment groups and now much can be learned from this experience, particularly with people with learning difficulties and mental health survivors and other groups. It has moved the scenario beyond the stereotype of physically disabled people in wheelchairs being the only ones running such schemes.

Ireland has shown very dramatically how much can be achieved in a short period of time with the right commitment, direction and political climate. In a country where Independent Living is fairly new it already has the feeling of being a very integrated system in the eyes of the general public and is further expressed by a very strong and energetic Independent Living Movement. During this last year alone 10 Centers for Independent Living were established in Ireland.

In this year we have witnessed new and encouraging developments in many countries e.g. Norway, Italy, Holland and Belgium, which are all characteristically unique. I am sure that in the coming years, these sort of developments will emerge in a number of other countries. Our work is only just beginning in some ways, even though the first Independent Living schemes in Sweden and the UK started in the early 1980s.

Workshops

The magic of events like the Experts' Meeting are demonstrated very clearly in the richness and diversity of the ideas that are communicated in the workshops. One of the striking features of the workshops was that everybody participated, such was the enthusiasm. There was a definite feeling among the delegates that there were a number of goals to be achieved and they were very intent on doing this. Not only were the thoughts and exchanges inspiring but in many cases also very practically based. The other striking feature was that there was a sense of solidarity and meaning in the discussions because of the commonality of the objectives.

Now with the conclusions and outputs from these workshops we intend to draw up a number of project proposals, and apply for funding so that we can put these ideas into action. This is the primary focus of ENIL.

Overall Event

As well as what was experienced and learned in the workshops there was a tremendous amount of networking going on all the time. I am sure many other informal but important seeds were sown in these exchanges which went on in the corners of the hotel and its bar. It is in these situations that some of the best ideas are created and formulated.

Alongside the serious discussions, people also thoroughly enjoyed themselves and I think the highlight for many of the delegates was the Saturday night entertainment. This was preceded by a very thought provoking talk by Frank Mulcahy of Disabled Persons International (DPI). Later on, an exhilarating performance of Irish dancing and music had everybody enthralled. We applaud our Irish colleagues for arranging this for us.

Outcomes

The Meeting´s three objectives were:

• reaching a consensus in furthering good quality standards of Direct Payments and Personal Assistance Schemes (PAS), throughout Europe;
• endorsing the campaign for the introduction of a Non-Discrimination Clause in the EU Treaty.
• crystalising our aims for the European Center of Excellence on Disability Studies.

All three were achieved.

The outcomes as previously stated will be drawn together as project plans for the future. We hope that we will then be able to secure the necessary funding in order to conduct some proactive research and project work on some of the recommendations from the Expert's Meeting. We also hope to eventually establish (with our colleagues from CIL Dublin), a Disability Studies Center. Work is continuing on developing this.

Way Forward

The future very much depends on whether we are successful in our application on becoming an NGO on the European Disability Forum. If we are successful it will put us in a stronger position to carry out our anticipated Action Plan. Whatever the final outcome on this matter, what is certain is that ENIL will continue to operate in terms of achieving its objectives of promoting, researching and developing Independent Living principles, practices and projects. After the experts meeting in Portlaoise we are even more enthusiastic about progressing our work. ENIL has a significant role in the future of disability politics in Europe and is committed to this.

DIRECT PAYMENTS

Introduction

Today, most service provision organisations, control and limit the lives of disabled people, and make us passive and dependent. The solution to this is for us to take a position where we no longer have to adapt our needs to the needs of the service provider, but instead shape our own services according to our needs. Turning ìcareî into ìpersonal assistanceî requires a fundamental shift in the distribution of power between user and provider. Direct Payments are, having access to the funds it takes to provide the level of assistance one needs.

Examples of Direct Payments

There are many differences and variations in Personal Assistance Schemes (PAS), and Direct Payments systems in the various European countries. However, the Swedish system is considered to have some of the best practices in terms of Direct Payments. The PA user can make a choice as to whether he/she will organise his/her own assistance, or whether he/she will join a user co-operative (i.e. STIL in Sweden).

Members of a user co-operative recruit, train, schedule, and supervise their own assistants. No assistants are shared. The co-op functions as a legal employer responsible for wage payments, tax withholding, accounting for used hours to social security, and most importantly, representing the member and collectively negotiating with funders (social security and local governments). This division of responsibility is to maximise the number of persons who can benefit from the advantages of user controlled schemes by freeing them from the burden of considerable paperwork. These co-operatives charge their members a certain price per hour for these services.

In order to have access to the necessary money, we need to rechannel the resources which are used in the disability field today. Instead of passively receiving services, the individual user needs to have the control to allocate money to pay for the services he/she needs. With the same amount, disabled people can achieve a better quality of life. With money in our hands, we can buy services from the provider of our choice; we can hire, train and fire our own assistants, which offers us the most direct control over service quality.

Direct Payments are truly the state of the art when it comes to enabling persons with significant disabilities reach self-determination, integrity and full citizenship.

FERGUS FINLAY PRESENTATION

Fergus Finlay is the parent of a person with a learning disability. He was advisor to the Tanaiste (Deputy Prime Minister) and the Minister for Foreign Affairs, especially in preparation for the Irish Presidency of the EU. He is involved in the Department of Equality and Law Reform and in the Commission on the Status of People with Disabilities. He is Political Director of the Irish Labour Party.

He attended the Experts Meeting as:

• The parent of a person with a learning disability.
• A person who has a particular interest in the Non-Discrimination Clause in relation to people with disabilities.

Mr. Finlay demonstrated the position of Disability and a Non-Discrimination Clause in the overall framework of EU policy and political agenda, by describing a long list of other policy priorities. In other words, because of the complexity facing EU policy makers, disability was barely on the agenda. It comes after a list as extensive as foreign and agricultural policy, monetary union, strengthening democracy, balancing the different EU institutions, concern on crime and many, many others.

He started his presentation by saying that, he saw disabled people's fight for equality as the last great civil rights struggle. He then went on to identify 6 battlegrounds for the Disability Movement:

The Non-Discrimination Clause

The draft Treaty, which at the time of the Experts' Meeting was being prepared under the Irish presidency is intended to equip the EU to grow. Mr. Finlay was confident that there would be an Non-Discrimination Clause in the draft Treaty, but:

• It had to survive in draft form, i.e. the Treaty had to get out of Dublin with the Clause still in place.
• It has to survive detailed negotiation under the Dutch presidency.

He said there was a good chance it would come out of Dublin, and that that was when the real lobby had to begin. The disability movement needs to preserve and strengthen it, so that it is adopted during the Dutch presidency in June 1997.

* Update (March 26, 1997)

Since the Expert's Meeting was held, the draft Treaty has survived the Intergovernmental Conference and has now been passed to the Dutch government.

The following is the New Article 6a in the TEC:

"Within the scope of application of this Treaty and without prejudice to any special provisions contained therein, the Council, acting unanimously on a proposal from the Commission and after consulting the European Parliament, may take appropriate action to prohibit discrimination based on sex, racial, ethnic or social origin, religious belief, disability, age, or sexual orientation".

It has been suggested that provision might also be made in the Treaty to take special account of disabled people. Such reference could be made, for example, in Article 127 (vocational training), or Article 100a (the harmonisation of laws), of the TEC. For a general outline of the draft revision of the TEC, see 'The European Union Today and Tomorrow'.

The Irish Government presented their draft treaty as brokers, but once the Irish presidency ended, they were then freed to act as advocates. It is now up to the European Disability Movement to mount a major campaign to fight for the survival of the draft Clause in the Dutch presidency.

Other possible changes to the EU Treaty

Conditionality should be attached to all EU funding. A disability policy should be introduced in order to ensure that conditionality is included in every policy area of the Maastrict Treaty i.e. transport, buildings and planning. Funds should not go to any development which is not accessible to disabled people.

There is an urgent need to campaign for this Conditionality Clause.

Social Exclusion

The main area of the European debate was focused on long term unemployment. It is of the utmost importance that we include disabled people in this argument, in order to counteract any form of social exclusion in all aspects of life.

Rules for funding, and the interpretation of those rules

The fourth battleground centred around tackling the way money is spent in the EU, and questioning its rules and regulations. The criteria for funding is such that the bulk of EU money allocated to disability, goes on training. This amount has been enormous and has yielded very little return. The rules governing the spending of this money and the interpretation of those rules only allow the funding of courses which train people to access the open employment market. There is no money for lifestyles or access. These rules and interpretations need to be challenged.

National legislation (Ireland)

There are three main pieces of legislation which are appropriate for eradicating discrimination. They are:

• The Employment Equality Act;
• The Equal Status Act, covering all areas other than employment;
• A full scale disabilities Act, i.e. the first piece of positive legislation.

Mr. Finlay said he didn't believe the Disability Movement had campaigned strongly enough, especially in regard to the Equal Status legislation. The argument has centred around publicans rights to bar travellers. If the voice of the Disability Movement isn't heard, he would fear for the effective implementation of the Equal Status legislation.

Resources (Ireland)

The last battleground is that of resources, as there is a tremendous competition for funds from all the various disability groups.

Due to this, and the huge constraints on resources, there is a need to keep disability as high on the agenda as possible - as high, for example, as public service pay. It will cost between £120m and £130m to implement the recommendations of the Commission on the Status of People with Disabilities.

Mr. Finlay concluded by saying that we have a fantastic agenda that has the capacity to become a huge agenda in the future with all the new demands.

MORNING WORKSHOPS

DIRECT PAYMENTS - BEST PRACTICES

Facilitator: Ms. Swantje Kobsell, ENIL

Rapporteur: Ms. Grainne McGettrick, Independent Living Community Services

Introductions

Following introductions by workshop participants, the aims of the workshop were outlined.

They were to:

• define good practices;
• identify them;
• advise on future actions for ENIL.

It was noted that in the various European countries, there are many differences and variations in Personal Assistance Schemes (PAS), and Direct Payments systems. A brief report was made on the current system in Ireland. It was pointed out that the Irish did not have a Direct Payments system at all. Instead, in Dublin 29 disabled people are receiving statutory funding through a mainstream service provider (which in effect operates a brokerage type system). In other parts of Ireland, approximately 100 disabled people rely on a job creation scheme (Community Employment), which is funded by the state. Each local CIL office has considerable autonomy in setting up and running the scheme.

Entitlement

It was concluded from this discussion that one best practice should be that everybody should be entitled to the amount of assistance he/she needs. Personal Assistance must be seen as a human rights issue, and not just a quality of life issue. The money spent on disability is our money, and therefore, it is our right to decide how it should be spent.

The question of using the courts to challenge decisions made in relation to the amount of hours was raised. It was decided that it should be the disabled persons right to challenge any decision in relation to their assessment for personal assistance in the courts. An example of successfully using the courts was given by the Swedish representative, where a person with a disability was not given PA hours for recreational purposes. He challenged it in the courts and won 15 additional hours per week. The right to redress through the courts is also possible in Flanders, Belgium.

Assessment

Assessment should always be based on self-assessment, because this is the fundamental principle of Independent Living. If reassessment is needed then a person should be able to arrange this, and if more assistance is needed they should be able to receive it.

It must be possible to have freedom of choice, so a person can choose their preferred system of assistance and how to organise it.

The Swedish model was again cited as an example, where the individual makes the assessment and is then visited by the Social Worker. If they are a member of a co-operative, a representative of the co-op. staff can negotiate alongside the individual who has made the application. However, this system still depends on how much of an impression one can make during the interview.

It was also pointed out that in many countries, there is an inequality in terms of personal assistance for disabled people in the cities and in the countryside.

Disabled people in some countries, are required to do 'boss' training (training the user in the necessary individual independent living skills and duties, and the issues around being an employer), which is carried out by the CILs/co-operatives. Boss training is done before the person employs a PA.

A best practice in terms of assessment is that a panel should exist which would have an experienced PA user, as well as a statutory representative on it. If there are more than two people on the panel, then there should be equal amounts of people who are 'in favour' (i.e. representing the interests of the disabled person), as there are in terms of the state.

Another best practice is that the assessment must account for the rights of the individual to have assistance at work, college, school, travel, social life and not just in the home. PA services must be all embracing, empowering and inclusive.

How often should the disabled person be assessed? Some account must be taken of the changes in lifestyle. Disabled people should be allowed to request a re-assessment at any time. However, they should not be assessed any more than once every two years.

The assessment process should not involve a means test.

System of Delivery

The PAS should be protected by law. There should be one system of delivery with some variations, not several uncoordinated systems. In Germany, for example, there are two systems which are often contradictory, and in Sweden there are three systems in place. This was seen as creating different classes among disabled people.

The preferred system would be that disabled people who are in receipt of a Direct Payment, should be able to choose how to channel and use the money, taking control of it directly themselves, or filtering it through a broker, agency or co-operative.

State services should not be allowed funding for a PAS and then use it for other services, which is actually happening in some countries. This pushes the cost of PA services up and then they are seen as being excessively high.

What ENIL can do to help:

• pursue legislation at EU level and in the individual member states for the rights of disabled people to have access to PAS.
• provide a forum to exchange examples of good practice in Direct Payments/provisions of a quality PAS, between the various countries.
• have groups of experts visit various countries and meet with the appropriate statutory and voluntary bodies.
• bid for funding through the EU Telematics programme to establish a thematic network (possible expansion of the existing HELIOS network).
• promote effective lobbying thereby encouraging countries to promote and run Direct Payment schemes.
• organise peer consultancy with other lobbyists.

DIRECT PAYMENTS - STRATEGIES/ACTIONS FOR ENIL

Facilitator: Ms. Bente Skansgard, ENIL

Rapporteur: Mrs. Selina Bonnie, CIL Dublin

Strategy one:

Make ENIL more influential at European level. To form a working committee to develop a strategy for working on the application of the European Disability Forum (EDF).

Action:

Apply for membership of the EDF.

Strategy two:

• Organise research on Direct Payments in order to:
• Define what are Direct Payments, or What are the extra costs of disability.
• Define a Personal Assistance Service. It should apply to all disabled people.
• Look into specific situations in different European countries in each of the above areas.
• Define Standards in all situations to arrive at an agreed, good and positive overall standard.

Action:

This can be arranged through the European Center of Excellence in Disability Studies (ECEDS).

Strategy three:

Training, to empower disabled people on how to utilise Direct Payments, to the best of their abilities.

Action:

Establish a training project to train trainers from all European countries who can then go back to their own countries and deliver the training.

In conclusion:

Develop ENIL further in order to have a more cross disability profile, and to include more than just physically disabled activists.

Action for this would be to include more disabled people in research.

To encourage and develop cross organisation discussion and co-operation.

BROKERAGE

Facilitator: Mr. Martin Naughton, Irish Wheelchair Association

Rapporteur: Mr. Alan Bruce, National Rehabilitation Board

Examples of Brokerage

Jane Campbell outlined the Direct Payments scheme in the UK which are basically ìcash for assistance requiredî, schemes. Since the new law, money is being given directly to the disabled person and not to a third party or a holding agency. The focus is on disabled people taking control. There are still questions being raised about assessment services as well as service provision. Some local authority resistance to these Direct Payments schemes still exists. The system is fairly complex and above all is NOT a right. It is means tested and subject to local interpretation. An interesting aspect was the initial opposition of socialists to Direct Payments, seeing them as privatisation through the back door. By focusing on human rights and individual responsibility and justice however, changes in the Labour Party were secured.

Theo Zwetsloot (Dutch expert), outlined the current situation in the Netherlands and the changes anticipated to bring in training and resources, to identify and meet the needs of disabled people.

Their system is based on:

• An income related payment;
• A free payment of £2400 per year;
• A Central Fund.

The discussion on Brokerage led to a concentration on the Netherlands and UK examples. In Ireland it was noted that while there was no legal impediment, lack of money was the key factor. This basic question had not been addressed - Brokerage goes with support. An administrative model of disability could lead to excessive bureaucracy.

A key issue here was control and power. Some felt that Brokerage would be suitable for some, but not necessarily all people. This led to a debate on what is the exact definition of Brokerage. The example of Denmark was raised as a successful model with a strong focus on consumer needs.

Suggested definitions of Brokerage

Brokerage provides centralised bargaining, securing the best possible service money can buy.

Some felt this could be seen as not very collective but rather excessively individualised. This brought up the question of who controls the brokerage system. Some linked this to effective advocacy policies.

There is a risk of creating layers instead of bringing services as close as possible to the user. Reference here was made to some of the recommendations of the Report of the Commission on the Status of People with Disabilities in Ireland.

There was a risk that this system could become elitist (e.g. Sweden). It is vital that it is as inclusive as possible. Many felt Brokerage should be broadened beyond PAS. Here it was felt to be helpful to view disabled people as more than consumers, but also producers.

There was an expressed need to look for creative and good financial strategies. Many felt that there was a climate of change and possible threat involved, for all concerned. No new money would probably be available so it was a question better utilising existing resources.

Discussion returned to the question of change of attitudes. The success of new methods would win support.

Collaboration between statutory and voluntary bodies in the Irish context was advocated. Too few disabled people are involved in the statutory bodies. Partnership approaches were strongly advocated.

Growth was seen as more intangible while remaining vital. It was sometimes easier to adopt a more rigid book-keeping approach. It was felt that people with disabilities should be seen in a holistic and community focus. Equal opportunities and full participation is necessary.

Conclusion

It was emphasised that in the Dutch experience, user control was central and was understood and practised. The need for close and detailed analysis of different systems of user control was stressed. It was felt that other models of brokerage should be studied to get the best results possible.

AFTERNOON WORKSHOPS

THE ROLE OF THE EUROPEAN CENTER OF EXCELLENCE IN DISABILITY STUDIES (ECEDS), IN THE IMPLEMENTATION AND HARMONISATION OF STANDARDS

Facilitator: Ms. Gordana Rajkov, ENIL

Rapporteur: Mr. Alan Bruce, National Rehabilitation Board

Introduction

The concept of the ECEDS was originally conceived some time ago and the purpose of these workshops was to come up with some ideas for action. These ideas being the catalyst to get the Center off the starting blocks.

The primary objective of the ECEDS will be to promote research in the field of disability in the relevant social, economic and political policy areas. The proposed Center will be a European equivalent of the World Institute on Disability based in the United States. It will act as a clearing house for data and provide a forum for disabled people as experts as well as other researchers and experts in the field to exchange information, knowledge and expertise. The Center will serve to bring together a diverse range of experiences and advance the thinking in research and policy areas.

The essence of the ECEDS, is that it will be disabled people who are the dominant force. We will play a leading role in the management and design of the programmes which the Center will become involved in. This will represent a movement away from the existing system, which is controlled by non-disabled professionals and a move towards the self help approach as advocated by the world-wide Disability Movement.

Any research carried out in the Center will be emanzipatory research i.e. it will involve disabled people researching our own agenda.

Topics:

• A definition of Personal Assistance.
• The role of professionals.
• The role of people with learning difficulties.
• Lobbying and influencing decision makers.
• The cost-benefit analysis.

Who should be involved:

ENIL in a strategic position of setting it up and as a focus possibly in association with Disabled Persons International.

CIL Dublin as co-ordinator

Funders.

The Center should have a cross disability focus. It should involve other international disability organisations.

ENIL would own the ECEDS and manage it.

National CIL would play a key role and would help in encouraging funders.

Report:

Having listened to accounts from our European guests telling us about PA and Direct Payment systems in their countries, it was agreed that the role of the ECEDS would be to gather information from around Europe and use it to formulate a set of standard guidelines for Direct Payments and Personal Assistance.

These European standards should be legally established throughout the EU, and European legislation should be used to promote standards and legislation in each country. When the ECEDS is established it must be noted that as a transnational Center, the differences of each participant country must be taken on board.

THE ROLE OF THE ECEDS IN DEVELOPING RESEARCH STANDARDS ON DIRECT PAYMENTS

Facilitator: Ms. Bente Skansgard, ENIL

Rapporteur: Mrs. Selina Bonnie, CIL Dublin

While ENIL is looking at establishing good practices and standards it does need to be careful not to bind itself to regulations that might in the end prove to be restrictive. Independent Living has always been about creating options and freedom. Any standards drawn up should always be our standards in collaboration with the EU and not the other way around. The whole point of PAS is that it is about individual people's lives and homes and it is very difficult to regulate uniform conditions for this. We should not anyway, because Independent Living is all about individual freedoms and rights. ENIL does need to keep a close eye on these areas when directives are being drawn up. The problem will be how much influence, effect and power we will have over this because the commission can be quite strong in all this. We must avoid a kind of alternated, regulated lifestyle because it would destroy everything the Independent Living Movement stands for e.g. dignity, freedom, choice and spontaneity.

We are talking about standards that include people not exclude them.

We need clear definitions of what standards are for all countries, because often different words have different meanings in different languages. We must concur that there is an agreed equality as well as quality.

Who drives the standards?

There is often an abuse in some countries when authorities claim they are running Direct Payment and Personal Assistance schemes but they are not what we mean by these schemes. That is why it is important to have an agreed European definition so that local areas cannot misinterpret it. There is an educational role to play here.

We must be careful not to fall into EU standards which are based on standards halfway between the best and worst.

Topics for Research - Aims and Objectives.

• Direct Payments.
• Means of Payments - Comparative Studies.
• Definitions of Disability/Census of disabled people.
• European legislation.
• Methods of Training.
• Disability Policy Making.
• Advocacy.

Who should be involved/Who should co-ordinate it ?

• The Center for Independent Living Dublin.
• The European Network of Independent Living/Disabled Persons International should be involved.
• Professional independent research bodies.

Role of ENIL - practical steps.

• Overall co-ordination and management.
• Establish a working group.

FINAL REMARKS

It is the expressed hope of the ENIL Board members that these Final Papers will become a useful tool in the campaign for Direct Payments. We have been furnished with some very positive ideas as a result of the Workshops and we will be actively working, to move from ideas to realities within the European context.

We believe that the opening remarks of Fergus Finlay's presentation and indeed the content of his presentation itself, make it as clear as crystal that there is a still a long way to go, and a lot of lobbying to do to ensure the inclusion of an Non-Discrimination Clause in the Maastrict Treaty.

ENIL will continue its endeavours to this end and will also practically assist the endeavours of others with a view to finally securing the essential Non-Discrimination Clause in the EU Treaty. It is in this context that we take this opportunity to wish our colleagues in the Netherlands the best of luck and a successful campaign during their Presidency of the European Union.

The European Center of Excellence in Disability Studies (ECEDS), remains high on the ENIL agenda therefore we will examine the possibility of securing Horizon funding for the establishment of this project with our Irish counterparts.

In conclusion, we cannot over emphasise the importance of individual activists and their organizions in their own countries, progressing and pro-actively lobbying for the inclusion of the Non-Discrimination Clause in the Maastrict Treaty. Our individual efforts can be the catalyst for change and the springboard from which our Dutch colleagues can gain momentum. This action is impearitive in order to keep the lobby for the Non-Discrimination Clause alive. So what ever you do, do something

With thanks

Many thanks go to Dublin Bus and Irish Rail, who accommodated us by providing accessible transport to and from the Experts Meeting. It is our hope to continue using this accessible form of transport for future events. Our thanks also go to the Irish Wheelchair Association, Muscular Dystrophy Ireland, and the Order of Malta, for their assistance with additional transport.

Our appreciation also goes to Fergus Finlay, for giving a most informative and inspiring presentation, and to Frank Mulcahy who at the eleventh hour wheeled in as our guest speaker.

We would also like to express our gratitude to Christian O'Reilly for his help in organising this event, and to wish him every success in his chosen career.

Compiled & Edited by Selina Bonnie and John Doyle, Center for Independent Living, Dublin, Ireland

EXPERTS MEETING PARTICIPANT LIST

John D. Evans, British Council of Disabled People & European Network on Independent Living, United Kingdom

Regina Reichart, European Network on Independent Living, Germany

Jane Campbell, National Center for Independent Living & the British Council of Disabled People, United Kingdom

Rosa Guimaraes, Disabled Persons International, Portugal

Maurice O'Connell, Independent Living Community Services, Ireland

Damien Kinds, ILV, Belgium

Raffaello Belli, European Network on Independent Living Italia, Italy

Theo Zwetsloot, Center for Independent Living Nederland, Netherlands

Jamie Bolling, STIL, Sweden

John Doyle, Center for Independent Living Dublin, Ireland

Alan Bruce, National Rehabilitation Board, Ireland

Declan O'Keeffe, Center for Independent Living Dublin, Ireland

Manfred Srb, European Network on Independent Living & BIZEP - Center for Independent Living Vienna, Austria

Peter Moore, Center for Independent Living Dublin, Ireland

Grainne Mc Gettrick, Independent Living Community Services, Ireland

Emma Flinter, Center for Independent Living Dublin, Ireland

Arthur O'Daly, National Rehabilitation Board, European Network on Independent Living & Coras Iompair Eireann (national public transport service-provider), Ireland

John Roach, Center for Independent Living & Independent Living Community Services, Ireland

Joe T. Mooney, Independent Living Community Services, Ireland

Nicola Meacle, Center for Independent Living Cork, Ireland

Dermot Hayes, Disabled People of Clare, Ireland

Bente Skansgard, European Network on Independent Living, Norway

Harriet Horan, Center for Independent Living Offaly, Ireland

Sean Brennan, Center for Independent Living Sligo, Ireland

Nan Sibbald, Center for Independent Living Carlow, Ireland

Jerome Mc Girl, Center for Independent Living Leitrim, Ireland

Gordana Rajkov, European Network on Independent Living & Center for Independent Living, Yugoslavia

Martin Hopkins, Center for Independent Living Donegal, Ireland

Gabriel Hayden, Center for Independent Living Offaly, Ireland

Fergus Finlay, An Tanaistes (Deputy Prime Minister) Office, Ireland

Kenneth Kilduff, Center for Independent Living Wexford, Ireland

Dermot Walsh, Center for Independent Living Dublin, Ireland

Martin Naughton, Irish Wheelchair Association, Ireland

John Kincaid, Midland Health Board, Ireland

Swantje Kobsell, European Network on Independent Living, Germany

James Rickard, Trinity College Dublin, Ireland

Frank Mulcahy, Disabled Persons International EU, Ireland

John Cronin, Department of Health, Ireland

Phil Cremin, REHAB, Ireland

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