Shaping Our Futures, A conference on Independent Living

Facing our futures brought together disabled experts on independent living, to share experience and map out future strategies. The conference set out to consider the social and economic arguments for independent living. Internet publication URLs: www.independentliving.org/docs2/enilfuture.html and www.independentliving.org/docs2/enilfuture.pdf

A conference on Independent Living
sponsored by the European Network on Independent Living (ENIL)
London, June 1998

PDF, 107 KB


Contents

Introduction
Conference background
Conference participants
Conference content
Assessment
Information on development, progress and achievements
Action plan

Detailed reports of proceedings:

Day One

The Amsterdam Treaty - what does it mean for disabled people in Europe?
Trends in government thinking on welfare and long-term support

UK
Norway
Sweden
Ireland
Germany
Austria

General issues from these discussions

Day Two

Welcome - Jon Snow, Channel 4 News, UK
Human Rights and Independent Living, Rachel Hurst, Disabled People’s International
What Price Independence, Gerry Zarb, intro by John Evans, UK

Workshops

Work in Germany and Austria
The UK situation
The situation in Eastern Europe

Plenary

Facing Our Future summary, Anne Marie Flanagan, Dublin Centre for Independent Living, Ireland

Closing keynote speech: Crip Utopia or the end of the welfare state? Adolf Ratzka, Independent Living Institute, Sweden

Day Three

Making the dream a reality - action to follow up this event


Introduction

Facing our futures was planned as a five day event, bringing together disabled experts on independent living, to share experience and map out future strategies, with one day also including a wider group, to share ideas.

This report covers the part of the event which took place in London. Two associated publications are the report from the Southampton part of the event, and a summary document covering the whole event. (See reference section for details.) Independent living is the emancipatory philosophy and practice which empowers disabled people and enables them to exert influence choice and control in every aspect of their life.

A crucial facet of independent living is personal assistance. "Personal" means that users exercise maximum control over how services are organised, and custom design their services according to their individual needs, capabilities, life circumstances and aspirations. A personal assistant will perform all the required tasks that a a disabled person is physically or intellectually unable to do in order for the person to achieve his or her goals.

In Europe, personal assistance users came together in 1989 at the European Parliament in Strasbourg, where they agreed a set of principles on independent living (the Strasbourg resolution) and founded the European Network on Independnet Living (ENIL). A copy of the resolutions and information about ENIL are included as an appendix to this report.


Summary

The conference set out to consider the social and economic arguments for independent living and to address questions such as:

How can we plan so that all disabled people get the choice of independent living, with assistance under their control?
Who should pay for this?
What are the costs and benefits of doing it (or the costs of not doing it?)
What can different European countries learn from each other on this?


Conference background

The organisers were all disabled people who are connected to the European Network on Independent Living (ENIL). One of ENIL’s aims is to ensure that the option of direct payments to employ personal assistants is available to all disabled people who want it.

Across Europe the question of who should pay for long term support for disabled and elderly people is being debated. In many places in Europe disabled people do not have an opportunity for independent living, the choices are family care or some sort of institution. In a modern Europe this should not be tolerated. The right to control basic aspects of existence should extend to all citizens.

The conference took place towards the end of the UK presidency of the EU. We see this event as having made a real contribution to European Social Policy. It also gave the UK the opportunity to showcase some of its pioneering independent living services.


Conference participants

The participants were disabled experts in independent living. For the middle day they were joined by an invited group of politicians, policy makers, researchers and practitioners who have an interest in human rights, disabled people, independent living, or long term care.


ENIL member group representatives

Frances Hasler - UK (London)
John Evans - UK (Hampshire)
Adolf Ratzka - Sweden
John Doyle - Dublin
Declan O Keefe - Dublin
Jaimie Bolling - Sweden
Bente Skansgard - Norway
Manfred Zrb - Austria
Carl Ford - UK (Shropshire)
Arthur O Daly - Dublin
AnneMarie Flanagan - Dublin
Swantje Koebsels - Germany
Gordana Rakov - Yugoslavia
Gianni Pellis - Italy
John Roche - Dublin
Hazel Peasely - UK (Southampton)
Selina Bonnie - Dublin
Nick Danagher - UK (Sussex)
Jane Campbell - UK (London)

Other participants:

Michael Turner (notes)
John Wall (Thursday only) - UK

Additional participants, Friday only:

 

Jon Snow, Channel 4 News
Kevin Mulhearn, Link Programme
Diane Leigh (admin)
Ann Macfarlane, independent consultant
Andrew Bruce, independent consultant
Rachel Hurst, Disabled People’s International
Denise Platt, Association of London Government/Social Services Inspectorate
Jenny Morris, writer/researcher
Daphne Statham, National Institute for Social Work
Gail Elkington, Help the Aged
Mike Oliver, Professor of Disability Studies
Vic Finkelstein, researcher
Patsy Holland, Dept of Health
Howard Leigh, Royal Commission on Long Term Care
Michael Jeewa, Asian People with Disabilities Alliance
Kenneth Kilduff, Ireland
Steve Harris, Cardiff & Vale Coalition
Etienne D’Aboville, Glasgow CIL
Frances Slack, Manchester Council


Conference content

This conference was grounded in a human rights approach. It ran over three days in London on the 4, 5, 6 June 1998.

The first and third days involved a group of representatives of the Independent Living movement in Sweden, Germany, Ireland, Italy, Norway and the UK carrying out an assessment of the current situation for Independent Living in Europe, and looking to the future and mapping out the best way forward for the movement to develop.

The middle day was open to a wider audience which included representatives of a range of organisations involved in services for disabled people and policy makers.

The morning session of this day was chaired by Jon Snow of Britain’s Channel 4 News and began with a keynote speech from Rachel Hurst, chair of Disabled People’s International. A newly commissioned paper on the social and economic costs and benefits of independent living was presented on by John Evans on behalf by Gerry Zarb of Policy Studies Institute in the UK.

Workshops debated the issues of planning for and paying for long term support for disabled people in different parts of Europe, themes which were explored in a plenary session chaired by disabled broadcaster Kevin Mulhern. It concluded with a provocative speech, Crip Utopia or the End of the Welfare State? by Adolf Ratzka, outlining the long-term benefits of the Independent living approach.


Assessment

This event was different. Perhaps for the first time, disabled people were able to interact with the some of the powerful people who shape our lives, on a basis of equality and mutual respect.

We believe the outcomes include a deeper understanding of the aims of the Independent living movement; a shared commitment to extending the opportunity of Independent living to more disabled people; some strategies for directing money out of dependency creating services and into independence supporting ones; new partnerships; a sense of energy and enthusiasm for shaping the future.


Information on development, progress and achievements

Disabled people at the event noted some urgent need issues:

  • organisations outside the movement trying to take over the name Independent living without fully taking on board the concept;

     

  • ensuring that the concept of Independent living is not diluted - "to hold on to the original dream."

     

  • develop approaches to Independent living other than direct payments;

     

  • to make economic arguments for Independent living while ensuring that the human rights angle remains paramount;

     

  • the importance of the process of Independent living and making sure that people get the right support with their arrangements for Independent living;

     

  • the importance of self-assessment;

     

  • the need to spread the concept world-wide, and the need to do this through a cellular approach, so that the idea is spread throughout society;

     

  • a recognition of the danger of becoming to bureaucratic and professional and ensuring that the movements maintains its grassroots approach;

     

  • the need to be responsible and take on the issues of Independent living by being part of the overall movement;

     

  • considering the direction of the CIL movement, and particularly issues around finances;

     

  • the importance of remaining political and making sure that the movement keeps its "bite";

     

  • the need to raise the profile of the movement


They set up an action plan to take work forward:

to work in alliance with older people with all sorts of disability and impairments, in an alliance with groups which help advance our goals noting that older people are facing institutionalisation against their will, so have strong shared concern with IL movement, however no political voice on this issue as yet

 

to develop training for disabled people on principles of Independent living, including needs/interests of disabled people from all impairment groups, all ages noting the need to share training resources, to develop a European standard

 

revisit basic principles of ENIL (Strasbourg resolution) jointly with Disabled People’s International

 

spread information about economic case for IL to member organisations

 

developing CILs, bringing together all the CILs in each country try to develop the definition of a CIL (particularly to guard against all sorts of places with no Independent Living ethos being called CILs)

 

to raise awareness of independent living noted need for a public relations strategy

 

to continue pressing for anti discrimination legislation at national level

 

ensure Facing our futures report is widely disseminated.


Detailed reports of proceedings

Day One

The Amsterdam Treaty - what does it mean for disabled people in Europe?

This session aimed to look at the legal situation on disability rights in Europe and how it could affect the independent living movement.

John Wall Chair of the UK Disability Forum Member of the Legal Rights Group of the European Disability Forum Chair of the Royal National Institute for the Blind, UK.

There has been much talk, for many years about the European Union, and some politicians get very hot under the collar about issues like surrendering our sovereignty.

The European Union has been in existence for quite a long time now and the Amsterdam Treaty is just the latest attempt to get the rules of the Union together. The fifteen countries have now agreed that certain areas of activity be done together, and the result of this is that around sixty per cent of new laws will come from the European Union in Brussels. It doesn’t really matter whether you see it as surrendering sovereignty or cooperation with our friends abroad, it is matter of pure factuality that what comes out of Brussels is very important, and therefore what they call their competencies and we would call their powers are very significant.

I make this point to begin with to make it clear that we are not dealing with some distant organisation, perhaps such as the United Nations which has very little impact on our lives at all, although it does do many good things. We are talking about institutions which actually affect our lives in very significant, day-to-day ways.

It is interesting to realise that although all of us who have disabilities know that we are discriminated against because of our disabilities, it took a long time before this was ever recognised. I am sure that all of you have heard of the European Convention for the Protection of Fundamental Rights and Human Freedoms on Human Rights, and how when these rights are infringed people can go to the European Courts of Human Rights in Strasbourg - though this situation will change now that they convention is gradually going to be incorporated in English, so instead of the farce of spending three years taking cases to Strasbourg, people will be able to fight cases in the English courts.

Be that as it may, Article 14 of the Convention which deals with discrimination says:

 

"The enjoyment of the rights and freedoms set forth in this convention shall be secured without discrimination on any grounds such as sex, race, colour, language, religion, political or other opinions, national or social origin, association with a national minority, property, birth or other status."

Disability ain’t there! It’s remarkable to me as a disabled person that we are not considered as possible victims of discrimination, as we all know we have been for a very long time. I mention this because when we started looking at this seriously when the new treaty was being considered, the European Disability Forum commissioned a report called Invisible Citizens which formed the basis of a certain amount of campaigning during 1995. It showed that the tendency among governments was just to say that discrimination did not exist or it was not a great problem.

This report was really a starting point for us. One of the things we realised was that we would not only have a battle with the entrenched conservatism of many of the governments which were around at the time, but that we were also fighting against what have been described as an enlightened document, the Convention on Human Rights.

The run up to the Amsterdam Treaty started in 1996 and there was an inter-governmental conference which looked at a whole list of issues, and for about a year the European Disability Forum and other disability organisations were trying to obtain a non-discrimination clause in the treaty. This was initially based on the idea of doing something similar to a non-discrimination clause which relates to nationality -since they were inorgerated in 1957 treaties have had a provision in them to say that people cannot be discriminated against on the grounds of nationality and that means, for example, if you are a French national who has come to England you can claim all the rights of an English national.

We initially wanted to get something along these lines so that there would be provision that citizens in European Union countries would be protected against discrimination on the grounds of disability. I have to say that although many of us felt that there was ample justification for this, we had to recognise what was possible, and it became clear that this were a number of countries who wouldn’t agree to it at all.

Following the change of government in Britain it became possible to work on a compromise, and this is the clause that was eventually agreed:

 

Without prejudice to the other provisions of this treaty, and within the limits inferred by it upon the council, the Council acting unanimously upon a proposal of the Commission, and consulting the European Parliament, may take appropriate action.

The treaty also allows the Union to take appropriate action to combat discrimination. One of the failings of previous measures had been that it did not allow for any action to improve the situation through positive discrimination and other measures.

That is the good news. We have put disability on the map and established that there is discrimination. What is unsatisfactory about this is that if it is going to be effective any universal anti-discrimination proposal has got to be approved unanimously, we all know how difficult it can be to get unanimous agreement on anything in the European Union. That is the battle for the future. I am told that there is already a move in the Commission towards unanimous agreement provision against race discrimination, and sex discrimination was one of the first issues to be tackled, and although there is still widespread sex discrimination there is at least agreement that it should be addressed.

While unanimity is difficult to get, it is possible to shame countries into action where there is a strong moral case for action, and my own feeling is that on the need for anti-discrimination it would take a very hard country to actually stand up against a reasonable non-discrimination directive. The second point for the future is that there is a move away from the need for unanimity, and it is likely that qualified majority voting will come.

The clause in the Amsterdam Treaty was not the end of the story. The European Disability Forum was concerned about addressing two other issues. Firstly, there was the provision for the internal market which allows Brussels to lay down standards for goods across the Union.

This has lead to a number of issues, such as the draft buses and coaches directive which was going to create standards for vehicles but took no real account of the access needs of disabled people and a directive on lifts which also ignored disability issues. As a result the European Disability Forum successfully pressed for a declaration within the treaty which says that the Union must take into account the needs of disabled people when preparing directives. Although this is not legally binding it will give weight to campaigning by disabled people in the future.

The final important point in the Treaty for disabled people is the Social Chapter which incorporates many regulations on employment. When it came to power in May 1997, the Labour Government agreed that Britain would sign up to the Social Chapter, which states that:

"The Community is to pursue the following objectives: the promotion of employment, improved living and working conditions so as to make possible their harmonisation while the improvement is being maintained; proper social protection; dialogue between management and labour; development of human resources; with a view to vast and high employment and the combating of exclusion."

We all know how difficult it is for disabled people looking for work, and the combating of exclusion is an important consideration for us. So, the inclusion of the Social Chapter in the Treaty and the UK’s acceptance of it is really very important.

The British government plans to ratify the country’s acceptance of the Treaty. Other countries have already ratified the treaty although others, such as Greece and Portugal, are moving somewhat slower. The legal effect of the Treaty will be limited until it has been fully ratified.


Questions and comments to John Wall

Q. What will Treaty mean in reality?

A. It is obviously hard to say until it is implemented. On the issue of procedures, the European Commission will pursue directives that will then be discussed in the European Parliament, they will then go before the Council of Ministers, who will vote on whether to accept it. Individual members states then have a timescale within they must pass legislation to incorporate the directive into their laws, though on some occasions directives are given immediate effect. So it may be some time before we feel the full effect of the Treaty.

Q. Looking at directives on services, a directive on lifting and handling of disabled people may have severe implications for Independent living as it limits the weight people are allowed to lift.

A. John Wall was not aware of this directive but offered to investigate it. He pointed out that one of the problems with Europe is that the distance involved can make it difficult to keep in touch with developments. One of the ways to keep in touch and find out about issues is through the All Party Disability group in the European Parliament.

Q. Following on from this, it was asked how the Independent living movement can lobby effectively at a European level?

A. The European Disability Forum is actively encouraging the Commission to ensure that it has to appropriate structures to ensure that it can consult with disabled people Europe to make certain that it fulfils the commitments made in the Amsterdam Treaty. The Forum has quarterly meetings with the Commission already, but there needs to better lines of communication, as happens in Britain with the government publishing papers for consultations about laws under consideration.

Q. One questioner gave examples of the very active implementation of the directive on lifting, and asked why there is a wide variation in the level of implementation of different directives?

A. This depends on interest groups taking up and using a directive. In the case of the lifting directive, trade unions may have been very active. But commercial interest, labour interests and other factors have a strong influence on what gets through and how it is implemented, so the problem of being aware of what is happening is very important. "You can’t influence something if you don’t know it’s happening."

One person observed that with the lifting directive the important thing should have been ensuring that disabled people are in control of how they are lifted, and that should have been the way to tackle this issue.

John Wall noted that it would still be possible to have the directive changed.

Q. The issue was raised of how difficult it is for people with care packages to move around the country because of problems around getting the same care package in difference authorities.

A. This is really an internal issue for member states, as European interest would only start when crossing-boarders becomes the issue.

Issues were unfairness in the way European funding for disability groups works, as there is only one area that disability groups can apply to and other funding programmes will not consider applications relating to disabled people.

John Wall that this problem exists, and that there are other forms of discrimination in the way the Commission works in terms of employment practices and also on issues like holding conferences in inaccessible venues. The ratification of the treaty will have many implications for the Commission itself as well as its members.

Q. How does the Treaty define disability and discrimination?

A. Unlike most British legislation the Treaty does not actually define any of its terms. While may be problematic in some ways, recent practice by the European Court of Human Justice, which will be responsible for any cases brought in relation to the Treaty, has generally been very broad in terms of interpretation of laws on other issues. The disability movement should be able to make case for a very wide definition of discrimination, taking in forms of indirect discrimination. The court has also been establishing a set of general principles which it applies to all its work, and these principles are grounded very much in human rights and this is likely to include non-discrimination in the future.

Q. A query was made about how European directive restricting workers’ hours to 48 hours a week should be applied to people employing personal assistants. Many people have their PAs on lengthy shifts. PAs may be covered by an exemption for domestic staff, but advise from the British government is not clear.

A. It is unclear how and the directive has been fully implemented. It is was suggested that the issue be taken up with the All Party Group on Disability in Parliament.

Q. In the light of the provision for anti-discrimination in the Amsterdam Treaty, how important is it for people to push for anti-discrimination in their own countries?

A. It is important to continue to press for anti-discrimination legislation in individual states because it clarifies the country’s position, and because of the issue of subsidiarity, which means that it is often better to use the laws that apply within a state. The European Disability Forum is encouraging people within member states to continue to press for anti-discrimination legislation.

Q. One person pointed to European funds being used to support segregated services, such as transport services particularly for disabled people, and asked this type of service could be stopped.

A. There is a growing emphasis on inclusion and mainstreaming, and this can be particularly important as it other voices to the issues we are working, such as parents with push-chairs also wanting better access to buildings and public transport.

This led onto some wider consideration of funding and the fact that funding is being reduced for many groups, including the European Disability Forum itself. Concern was expressed about the decreasing number of programmes on disability, which that means there is likely to less scope for disability groups to apply for funding.

It was agreed that the situation is unsatisfactory, although some work will now be under the heading of social exclusion.

 


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