Southampton Centre for Independent Living

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.

On June 18, more than a hundred Disabled People gathered outside Downing Street to show support for the Disabled Persons (Independent Living) Bill which was being debated in the House of Lords.

The rally was organised by Our Lives, Our Choices which is a consortium of disability organisations including NCIL.  The rally was addressed by Lord Ashley of Stoke and Roger Berry MP who are sponsoring the bill.

A small delegation which included Sue Bott from NCIL and Robert Droy from SCIL were then allowed to deliver a banner with testimony from many Disabled People to the door of 10 Downing Street.

Roger Berry then hosted a reception at Portcullis House for many of the rally participants where there were further speeches of support from the Equal Opportunities Commission, Carers UK, and the National Pensioners Forum. Baroness Jane Campbell of Surbiton also gave a rousing speech to her fellow ‘freedom fighters’ to carry on the campaign.  

A successful day was tinged with sadness following the news that Roy Webb from NCIL who had been instrumental in organising the Our Lives, Our Choices campaign had died on June 15.

As someone involved with SCIL for many years, one thing characterises what we are, and that is that we don’t like to see grass growing under our feet. This particularly true of how we work with businesses, to help encourage them to see the value of Disabled People, both as customers and employees. Now we want to move the goalposts again…

But first: A brief history of our work with businesses: First came ‘partnership’ meetings:These meetings involved ’support’ organisations and one or two big businesses. We all agreed what a jolly good idea it would be for all sizes of businesses to see the value of Disabled People. The trouble was we were preaching to the converted. The businesses that we wanted to get to, didn’t really want to get to us! After all, they were too busy trying to make money.

Then came ‘Barriers to Business’, SCIL organised a £20k conference in 2002 aimed at promoting ‘the business case’ to business. We got several businesses to say how great Disabled People were at improving their profits, we also got the Minister for Disabled People in. The conference was memorable for 2 things (1) a huge polystyrene graffiti wall, and (2) SCIL proves it can pull off these events. However, we still attracted more of ‘the converted’ than those that we wanted to convert.

Most recently… The Business Awards - This was built on the ‘if you can’t beat them’ principle. Businesses like being slapped on the back and receiving trophies. We reasoned that other businesses will look at the winners and say ‘we want to win that award next year’. Well, after three years the awards have been a very successful method of publicity for SCIL and sponsors loved them. But, we still really struggled to persuade businesses to get nominated.

Whilst all these events have been good for SCIl in some respects, it does feel like we have flogged a few dead horses along the way. So, where next - SCIL is not known for quitting…

We now have developed a plan to ‘mystery shop’ businesses and statutory services that Disabled People should have the same rights to access as everyone else. We want to develop an annual survey of how local businesses are treating Disabled People. We want to get Disabled People to visit these organisations incognito, and develop a way of assessing how well or bad these organisations are doing to include Disabled People. By publishing our findings we feel we might instil a mixture or fear and competition in them which will result in better outcomes for us as Disabled People. 

Tell us what you think? We’d love to know.  PS: It is ideas like this that show just how very different we are from the enemas of this world that are only interested in doing things that make them money - SCIL like taking risks and we will not be going away real soon… Take note.

This article was written by Ian Loynes - Chief Executive of SCIL.   

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. 

A possible turning point occurred this week in terms of the fight for Disability Equality in the United Kingdom. It wasn’t a new piece of legislation, it wasn’t the launch of a new Commission, it was the fact that we became aware that two of the most powerful figures in the UK political arena have Disabled Children.

David Cameron, the leader of the Conservative Party, has a Disabled son who has cerebral palsy and epilepsy and this week it was revealed that Gordon Brown’s four month old son has cystic fibrosis. We are therefore in a possibly unique position where who ever is the next Prime Minister will have hopefully a greater understanding of Disabled People and the discrimination and barriers that are faced by Disabled people every day.

Now, I am not suggesting that David and Gordon will naturally support all the aims and objectives of the Disability Movement and our fight is far from won. For example David Cameron feels special schools should stay open as a way to preserve “parental choice”. However, hopefully now Disability issues will be seen as important and not seen just as a good opportunity for a nice photo shoot with a bunch of crips.

This is not about nepotism either. It is just human nature that if you have personal experience of something, that you are more likely to have an opinion, and less likely to let ill-informed advisers tell you that there’s no problem.

Whoever becomes the next Prime Minister, it will be interesting to see whether in five years, Gordon and David’s personal experiences with their children will have influenced their policy making regarding disability issues.

The Disability Equality Duty (DED) is an important new duty aimed at promoting disability equality across the public sector. The DED, also referred to as the general duty, sets out what public bodies must have due regard to in order to promote equality of opportunity.Most public bodies are also covered by specific duties, which set out a framework to assist public bodies in meeting their general duty. All public bodies covered by the specific duties must:

Publish a Disability Equality Scheme (including within it an Action Plan)

Involve disabled people in producing the Scheme and Action Plan

Demonstrate they have taken actions in the Scheme and achieved appropriate outcomes

Report on progress and review and revise the Scheme regularly. 

In direct response to this new Disability Equality Duty which comes into force in December 2006, organisations of Disabled People from across the South East are joining forces to launch South East Disability Equality Council (SEDEC), a regional one-stop-shop for public bodies to be able to get informed, consistent advice and guidance around Disability Equality.

The new Duty gives rise to new challenges for public bodies, in particular the continuing involvement of Disabled People and for the first time ever, public bodies will have to take responsibility for tackling the institutional discrimination that Disabled People face.

SEDEC can offer public bodies information, advice and support in order for them to fully understand their responsibilities regarding the new Duty. SEDEC can also assist organisations to draw up their Disability Equality Scheme and monitor their progress. 

Through SEDEC, subscribing public bodies will have access to relevant, up to date information gathered through consultation and audit processes as well as professional advice and guidance to enable them to meet the standards through publications, events and an ongoing dialogue.  

SEDEC will be made up of Disabled People from across the South East who are well informed about the issues and the Social Model and will be setting the standard for Disability Equality in the South East. SEDEC also offers an opportunity for Disabled People to become involved by offering Disability Equality Training and a chance to be part of the council. Ian Loynes, Chief Executive of Southampton Centre for Independent Living said ‘ SEDEC will be an opportunity for Disabled People to lead the way in achieving true Disability Equality’.

There is still time to register to attend SEDEC’s launch event ‘Ten Years On’ at The HG Wells Conference Centre in Woking, on December 4th, giving public bodies and Disabled People a chance to reflect upon what has been gained since the implementation of the DDA and what we hope to achieve in the future with the new duty.

The keynote speaker will be Caroline Gooding who is Director of Legislative Change at the Disability Rights Commission. Caroline is responsible for advising on key long term cross cutting disability issues, as well as the overall impact of the Disability Discrimination Act.

Conference participants will also hear froim Disabled People across the region about the impact that the DDA has had on their lives and what they hope to see happen in the next 10 years.It will also be an opportunity for public bodies to share best practice.

Whether you are a Disabled Person interested in getting involved with SEDEC or you work for a public body and want to find out how SEDEC can help you, it will well worth attending.  You can register on the SEDEC website or for more information, you can call Amanda on 023 8020 2650.  

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

December 2006 offers Disabled People a unique opportunity to ‘up the ante’ in regard to Disability Equality. The Disability Discrimination Act (DDA) will be ten years old on the 3rd December and the next phase (part 6) of the DDA, The Disability Equality Duty, comes into force.

This new Duty applies to all public bodies and is enacted on the 5th December. All of them have to comply with the general duty, the goals of which are:

• Promote equality of opportunity between Disabled People and other people.
• Eliminate discrimination that is unlawful under the Disability Discrimination Act
• Eliminate the harassment of Disabled People that is related to their impairment
• Promote positive attitudes towards Disabled People
• Encourage participation by Disabled People in public life
• Take steps to meet Disabled People’s needs, even if this requires more favourable treatment 

Most bodies also have to comply with the specific duty which includes publishing a Disability Equality Scheme. This has to be published on 4th December and must include an action plan setting out how they will achieve the goals set out in the general duty. This plan has to be put together ‘involving Disabled People’ and showing how they have done that. 

We recognise that many bodies are struggling to do this effectively and so SCIL & HCODP along with other organisations of Disabled People across the South East have come together to form SEDEC – The South East Disability Equality Council. This will be a ‘one-stop-shop’ for public bodies to be able to get informed, consistent advice and guidance around Disability Equality.

SEDEC will be made up of Disabled People from across the South East who are well informed about the issues and the Social Model and will be setting the standard for Disability Equality in the South East.SEDEC also offers an opportunity for Disabled People to become involved by offering Disability Equality Training and a chance to be part of the council.

To launch SEDEC we will be hosting an event ‘Ten Years On’ at The HG Wells Conference Centre in Woking, on the 4th December, giving public bodies and Disabled People a chance to reflect upon what has been gained since the implementation of the DDA and what we hope to achieve in the future with the new duty.

If you are interested to know more about SEDEC then email info@sedec.co.uk or phone Ian or Hazel on 023 8033 0982.