In 2003, during the European Year of Disability, the Disability Movement tried to get the European Parliament to adopt a Disability Rights Directive, but failed. Now in 2007 (the European Year of Equality), the European Disability Forum has launched a new campaign for a Disability Directive.

What has changed? In 2003 the European Commission argued that they had their work cut out in implementing the European Equal Employment Directive. A Directive that would force the UK Government to strengthen Equal Employment legislation and force all employers not to discriminate in recruitment, promotion or training on grounds of disability, age, sexuality or religion.  

In December 2006 the United Nations adopted the Convention on the Rights of People with Disabilities, which contains comprehensive measures to develop full equality for disabled people in all areas of life. This is already adopted in certain aspects by the European Commission and 22 of the 27 EU members, but with no common Convention how can the EU claim to have a unified market with social measures?

The European Union has between 50 and 100 million disabled citizens depending on how they are counted. At present there is no unified definition or method of enumerating and a unified directive would ensure such agreements. Already the EU has demonstrated the benefit of a European-wide legislation for disabled people in the UK, through such things as The Equal Employment Directive - extending the coverage of the DDA, and The Air Passenger Directive - ensuring equal treatment of disabled people by airlines across Europe. Trans-European train, bus, coach and ferries directives are also in the pipeline. None of these things are covered by the Disability Discrimination Act.   

The UN Convention covers all aspects of life, including the development of an inclusive education system, the need to get more disabled people into work, women and children’s rights and the right to supported decision making for all rather than guardianship. However, disabled people and their allies will have to struggle to get these things into British Law, but a really effective way is to get them into a legally binding European Directive.  

Support the campaign, sign the petition and make a change. 

The UK is lagging far behind other countries in collecting signatures. So far over 250,000 have been collected across Europe, but only 5,000 in the UK so please do all you can to get signatures online at  www.1Million4disability.eu

Thanks to Richard Rieser, UK Council for Disability Rights in Europe representative on the European Disability Forum, for this information.

Progress on Independent Living issues in Serbia are widely expected with the news that Gordana Rajkov has become the first disabled person to be elected as a MP in the Serbian Parliament.

Gordana Rajkov is on the Board of the European Network on Independent Living (ENIL) and has been heavily involved in the development of the Centre for Independent Living in Serbia. Gordana spoke with passion at the recent ENIL conference in Valencia about the importance of Direct Payments and Personal Assistance within Serbia.

It is encouraging that Disabled People in Europe are securing positions in the political sphere where they can hopefully influence policies that have a direct effect on Disabled People’s lives.

Thanks to Hampshire Centre for Independent Living for this article giving a short history of means tested charging for social care services…… 

Back in 1990 my friend Mark, Chairman of the local Coalition of Disabled People, started a campaign to resist the introduction of means tested charging for services to older people.  Many of us though sympathetic to the organisation only half-heartedly supported this campaign. ’It is only old people in nursing homes’ we thought. Mark was adamant that even though this did not affect most of us, nonetheless it had to be opposed because it was wrong to discriminate in such a manner. Besides, he said, one day the policy might come to include us. 

In our ignorance we thought the proposals sounded reasonable.  After all we secretly reasoned. these were elderly people now in ‘care’, probably beyond active life.  Surely it was reasonable to ask them to contribute to the cost of their well being?  The sums were not punitive, mere pocket money.  Research amongst them had found support even though the researchers admitted that many were incapable of understanding the questions let alone giving a reasoned answer. 

The subsequent history is simple. Mark led the coalition in challenging the local authority.  The first measure was to ask for wider consultation amongst the disability community.  The local government commissioned further research which they said again gave majority support for their proposals.  Indeed the local authority did this exercise twice, each time conducting the ‘survey’, each time compiling the results, each time gaining the answer they wanted. 

The local authority ‘survey’ was loaded.  Mark and the coalition were convinced that ‘turkeys do not vote for Christmas’.  They never have and they never will.  Local politicians know that given a choice voters support parties who reduce taxes.  Is it really likely that disabled people are going to say they want to pay for services?  That they are happy to pay a ‘disability tax’? Ah but the authority asked cunning questions:

Do you think we should help as many people as we can? Yes/No 

Do you agree that those who can afford to should contribute towards the cost of their service? Yes/No 

Yes of course we should help as many people as we can.

Yes of course rich people should contribute towards the cost of their service.

Never mind the research, Mark was right, the means testing and charging policy for social care services was wrong in principle.  It was wrong because it is discriminatory.  Furthermore Mark has been proved right in saying that this policy would one day affect us all.

Another reason why people thought the practice acceptable was that the sums involved were of pocket money proportions.  A tickle rather than a fatal stabbing.  But Mark was wise and saw that the introduction of this policy was the thin edge of a wedge At the time none of us had personal experience of being charged for social services. 

We did not know about the financial assessment process.  A violation, a degrading and humiliating experience, a laying bare of ones life, an enforced exposing of all ones personal income and expenditure to a previously unknown apparatchik who records every detail ‘for the office’ and decides whether or not we are judged able to contribute to the cost of our care.  The threshold being the national ‘subsistence level plus 25%’, any monies above this must be used to buy your own care or pay the local authority ‘charge’ per hour.

Turn to 2006. At regular intervals over the intervening years the means testing and charging policy has been reviewed and each time history is repeated, the result has been to broaden the scope and depth of the practice.  First it was just elderly people in nursing homes and only pocket money, now it affects all disabled people, all people using services and the sums can be anything up to £385 per week. 

So what is the point of this history? Simple.  The policy was introduced in a reasonable manner.  It appeared harmless, only affecting one small group, old people in the nursing homes.  The sums involved were of pocket money proportions.  It all seemed harmless, tolerable, acceptable.  And besides all that it did not include us. Over time the scope and depth of the policy has deepened and widened such that at the end of 16 years all disabled people are significantly affected.  What we thought was nothing to do with us now bites us all and bites hard.

That is the background.  That is the history.  Those are the facts.   Anybody anywhere in Europe who believes that the means tested charging policy is acceptable as long as the practice is ‘fair and reasonable’ needs to look to England and see that not only is the policy discriminatory, its application is punitive and far from fair and reasonable.  It is a hidden tax on impairment, a cancer secretly eating its way through our society and ‘no one’ speaks out against it until it bites them. 

‘Ask not for whom the bell tolls, It tolls for thee’  (John Donne)

Yesterday, The United Nations General Assembly adopted a landmark disability convention, the Convention on the Rights of Persons with Disabilities the first human rights treaty of the twenty-first century and one that United Nations Secretary-General Kofi Annan said represents the “dawn of a new era” for around 650 million Disabled People worldwide.

‘Today promises to be the dawn of a new era – an era in which Disabled People will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long. This Convention is a remarkable and forward-looking document,” Mr. Annan said in a speech read out by Deputy Secretary-General Mark Malloch Brown.

The convention sets out in detail the rights of disabled people. It covers civil and political rights, accessibility, participation and inclusion, education, health, employment and social protection.
The convention also recognises that attitudes need to change if disabled people are to achieve equality.  It will be open for signature and ratification on 30 March 2007, and will enter into force after it has been ratified by 20 countries. 

The convention recognises the social model’s definition of disability. It states that ‘disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’. Despite this, the convention continually uses ‘people with disabilities’ rather than the term ‘Disabled People’  

The convention runs to fifty articles although article 19 may be of particular interest to blog readers as it is entitled ‘Living independently and being included in the community’. It says:

‘States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.’

Article 24 covers Education and emphasises that Disabled People should be able to ‘access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live.’, and that they ‘receive the support required, within the general education system, to facilitate their effective education;’

The convention as a whole makes interesting reading and of further interest will be how quickly countries ratify the convention and what effect it will have, around the world, to protect Disabled People’s human rights. 

In the final report on the European Network for Independent Living conference in Valencia, we report on the work of ECEPA and the Strasbourg Freedom Drive, as well as promoting future European events in 2007.

Adolf Ratzka from the Independent Living Institute in Stockholm spoke about the European Centre on Personal Assistance (ECEPA) project which aimed to create a Europe wide policy on Personal Assistance.

The policy aimed to define what a Personal Assistant is and what are the key elements to any national Personal Assistance model. The key elements are as follows:

1. Eligibility - Eligibility must be granted solely on the basis of a person’s need of practical or, if applicable, intellectual or emotional assistance by others in the activities of daily living. regardless of cause or medical diagnosis of one’s disability, a person’s age, employment or insurance situation and regardless of income or property of the recipient or the recipient’s household or family.

2. Needs Assessment - The needs assessment must: take into account the person’s current whole life situation and enable recipients to take their rightful place in family, neighbourhood and society with all resulting duties and responsibilities including the culturally customary responsibilities within the family for household, care of small children or aging parents, assistance at the work place, during leisure time, outside the home, on travel and during vacations.

3. Appeal Procedure - Clear, inexpensive and effective appeal procedures must be in place to challenge needs assessments, if necessary, in court.

4. Direct Payments, not services in kind - Cash benefits or Direct Payments are indispensable for users’ self-determination. With the funds recipients must be able to purchase services from the providers of their choice and/or employ their assistants, including family members, themselves.

5. Payments’ amount independent of service provider - Amounts are to be based solely on assistance needs and not on the service providers’ identity. Persons who live in the community and employ their assistants themselves must receive payments in the same amount as if they lived in a residential institution or received community-based services.

6. One central funding source - Under the policy one and the same national level funding agency has to cover all recipients and all their activities. Each recipient must not have more than one agency to deal with. In case several sources contribute, one of them is to be the guarantor for the other sources.

7. Payments for personal assistance as legal entitlement - Recipients must be legally entitled to receive payments for personal assistance irrespective of the funding body’s financial situation.

8. 100 percent coverage of personal assistance costs - In order to facilitate recruitment of personal assistants, Direct Payments must cover all costs of employing a person including such costs as union wages, unsocial hours and over time, workers’ social insurance, accident and liability insurance, pension, vacations, maternity leave, sick leave, training (if deemed necessary by the user); the costs of accompanying assistants around town (e.g. for food, entrance tickets, transportation) or when travelling (e.g. for airfare, hotel room, maintenance); payroll administration and audits. In order to enable users to reap the maximum benefits from Direct Payments for personal assistance, benefits must include the costs of user training and peer support.

9. Constant purchasing power of payments -The level of cash benefits must be annually adjusted to avoid purchasing power losses and to guarantee that payments cover the full costs of the assessed number of assistance hours.

10. Recipients are accountable for the use of Direct Payments - Recipients must periodically account for use of funds. Periods should be 12 months or longer.

A pan-European policy on Personal Assistance was also one of the key demands that the Strasbourg Freedom Drive took to the European Parliament in 2005. The other key demands are: Action to address the growing number of Disabled People being institutionalised, More effective representation of Disabled People in European Social Inclusion strategies, The right to gain Personal Assistance services regardless of cost, Promotion of the appropriate implementation of the philosophy of independent living,  5% of Overseas Development Aid to be given to community development projects for disabled people in developing countries, Action to highlight and address the significant human rights abuses that many Disabled People experience and the right to retain personal assistance funding when travelling, regardless of length, or purpose of journey.

Don Bailey from Dublin CIL showed an excerpt of their DVD that they made during the first Strasbourg Freedom Drive in 2003 and informed delegates that another Freedom Drive was planned for September 2007. The Freedom Drive consisted of meetings with local MEPs and a march through Strasbourg to the European Parliament. This is linked with attending the Disability Intergroup with MEPs from across Europe to discuss our key demands.

It was generally acknowledged that the event was very motivating however there was concern expressed that many of the key demands were outside the remit of the European Parliament. Despite this, it was felt important that Members of the European Parliament were aware of the issues as they did have influence over topics such as geographical mobility within Europe.

SCIL are hoping to send a delegation from the UK on the 2007 Strasbourg Freedom Drive, so please get in touch if you are interested in getting involved.

ENIL are also planning another conference in Valencia in April 2007 which will be a good opportunity to try and progress many of the issues discussed and hopefully further the aims and objectives of ENIL. In order to promote discussions between CILs across Europe, ENIL has set up an internet discussion list which it is hoped will help all the countries keep in touch in between the various face to face events and meetings.

The conference in Valencia provided a great opportunity to kick-start the work of the new ENIL Secretariat and hopefully will enable ENIL to take a strong lead in developing Independent Living policies across the whole of Europe. 

This is the second in our series of articles covering the European Network for Independent Living (ENIL) conference which was held in Valencia in November 2006. The first article can be found here. 

Vibeke Melstrom and Knut Flauum from ULOBA in Norway traced the history of the Disability Movement through a lively presentation combining archive photographs with popular music spanning the last sixty years.

When Rosa Parks refused to give up her seat to a white man on a bus in 1955, she cannot have imagined that years later she would be regarded as the ‘Mother of the Modern-Day Civil Rights Movement’. In 1972, Ed Roberts founded the first Centre for Independent Living in Berkeley, California. In 1990, the Americans with Disabilities Act was signed into law by George W. Bush. In 1991, ULOBA was founded in Norway by five wheelchair users. ULOBA was based on the Independent Living philosophy and was set up to combat the discrimination of Disabled People. In 2000, all municipalities in Norway had a mandatory obligation to provide Personal Assistance services. In 2003, the European Year of Disabled People and the first Strasbourg Freedom Drive was held to highlight to members of the European Parliament, the issues faced by Disabled People.

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In 2006, over fifty years after Rosa Parks refused to give up her seat, many Disabled People are still unable to get on buses in Europe.

Gordana Rajkov from Serbia introduced a new video that has just been produced in Serbia about their pilot ‘Personal Assistance’ project. The video called ‘The Idea Whose Time Has Come’ features some of the participants of the scheme tell their own stories about how Personal Assistance has changed their lives. One participant spoke about how it had enabled her to visit her father’s grave for the first time. Other participants spoke of how they no longer had to rely friends and family to do basic living tasks. It was striking how similar the video was, to videos regarding personal assistance from other countries. It demonstrated that people all across Europe face the same barriers to living independently and the majority of governments just expect the family of the Disabled Person to meet all the shortcomings of the statutory ‘care’ system.  

Colin Barnes spoke at length about the work of the Centre for Disability Studies at Leeds University, particularly highlighting their archive of several hundred articles and books related to Disability Politics all available online. Colin outlined the development of Independent Living in the UK and the history of the Disability Movement. He noted that there were many organisations run and controlled by Disabled People but that they all suffered from short term funding which stunted their ability to develop.

He always warned that many other larger organisations were latching on to the language around Independent Living and were stealing work away from the smaller locally based CILs. Worryingly, many other countries were experiencing similar problems, particularly in regards to winning funding applications.

Colin told the conference that one of his current pieces of work was to try and map where all the true CILs were within the UK, particularly as the UK Government aim to have a Centre for Independent Living in each local authority by 2012. Colin also distributed two of his papers ‘Disability Studies:what’s the point?’ and ‘Creating Independent Futures’. 

The final report from Valencia is here

Valencia in Spain was the location for one of the largest gatherings of Independent Living activists in many years. Organised by the European Network for Independent Living (ENIL), delegates from 14 countries met for 3 days between the 2nd and 4th November 2006 to discuss a whole range of issues regarding independent living. In this short series of articles we hope to give you a flavour of some of the issues that were discussed and encourage you to get involved in future events that are planned in 2007

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Valencia is the 3^rd largest city in Spain after Madrid and Barcelona and will play host to the America’s Cup in June 2007. Valencia is a city of two halves with a beautiful ‘old’ town and a more modern commercial area. Between these two areas, a grand and imposing City of Arts and Sciences has been designed by Santiago Calatrava which comprises of an IMAX cinema, science museum, a large oceanarium and a new opera house reminiscent of Sydney Opera House.  

The conference was entitled ‘CIL = Empowering: We Make The Change’ and several influential speakers from the Independent Living movement spoke, including Adolf Ratzka and Colin Barnes. The meeting was opened by Alicia de Miguel from the Ministry of Welfare of the Valencian Regional Government who was instrumental in securing a Secretariat office for ENIL in Valencia for the next year. Alicia de Miguel confirmed the Valencian Regional Government’s commitment to the independent living philosophy and hoped to work with ENIL to promote this cause.

John Evans, the President of ENIL, welcomed the setting up of the Secretariat in Valencia and said ‘For the European Network on Independent Living (ENIL), the main aim of this meeting is enhancing the European CILs’ network, in order to find common strategies to develop Independent Living and to strengthen the IL movement in Europe. That’s why ENIL has brought together those IL activists working in CILs from all over Europe: to exchange ideas, experiences, and good practice. It is necessary to strengthen our links now when the Commission is keen on supporting and developing community living based alternatives and Independent Living as an alternative to institutions. It is also good at the moment to be united when many EU member states are cutting back the resources supporting disabled people led organisations.’ 

Representatives from ULOBA, based in Norway, presented a new book that they had commissioned called ‘Folk’. This book contains strong images of Disabled People along with quotes from people committed to human rights for all

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You can see a preview of the book here  

Javier Romanach who is the Co-Founder of the Independent Living forum in Spain, introduced a new concept that they are working on in Spain for ‘Functional Diversity’. ‘Functional Diversity’ is a different way of looking at the issue of impairment. There are a range of aspects to the way people function. These include Aesthetic, Physical, Sensory, Social, Emotional, Cognitive and Spiritual. Each of us have a different capacity to function in each of these aspects, for example, an athlete or dancer may have a very high physical capacity but an average cognitive capacity. A scientist may be the opposite. Similarly a person labelled as having impairment may have low capacity in a certain aspect but high capacity in another aspect of function. Functional diversity is therefore a way of thinking that takes away the boxes of “impaired” and “normal”. It allows all people to share in the complex array of human function and benefit from their strengths.

Javier’s presentation raised a number of issues. Some delegates thought that the concept was putting the focus back on the individual rather than concentrating on changing society. Other delegates voiced the concern that it was harking back to the days where people argued that everyone has a ‘disability’ in one way or another. This of course denies the impact that society’s reaction to an impairment has on whether a person is labelled as ‘disabled’ or not and thus discriminated against.

This discussion illustrated very well the very different cultural backgrounds the countries represented came from. Throughout the three days, there was much discussion around language – functional diversity vs. impairment, citizens vs. users, Disabled People vs. People with Disabilities. Despite many common themes developing throughout the three days, the language of the Disability movement remains a highly debatable issue.

More news from Valencia can be found here