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.

Our Lives, Our Choices is the campaign for the right to independent living. The campaign is being supported by many organisations such as NCIL, as well as trade unions, MPs and Peers. As part of the campaign, a National Rally is being held on 18 June between 12 and 2pm at 10 Downing Street in London.  

At the rally, stories of Disabled People who are struggling to live independently will be presented to the Prime Minister. Disabled People will be demanding legislation that guarantees their right to the support they need to live free and equal lives. 

The Disabled People’s (Independent Living) Bill is a private member’s bill sponsored by Lord Ashley of Stoke and Roger Berry MP. If passed, the Bill would give Disabled and Older People clear legal rights to the services and support needed to control their own lives and participate in society.  

Even if you cannot come to the rally, you can still support the campaign. You can request a ‘Our Lives, Our Choices’ campaign pack which will tell you everything you need to know about the Independent Living Bill. It also contains model letters that you can send to your MPs and local authority and tips on how to get the local media to talk about the campaign.

For more information email policy@ncil.org.uk or look on the website www.ncil.org.uk

On February 14, the Disability Rights Commission launched what will probably be its last major inititative before it is merged into the new Commission for Equality and Human Rights in October 2007.

The Disability Agenda sets out what the DRC consider to be the major public policy challenges that Britain is facing and the action required to meet them.  These include promoting a culture of human rights and equality, bringing an end to child poverty, increasing life chances through learning and skills, ending poverty and widening employment opportunity, increasing participation in public, civic and community life, developing a social care system fit for the future, tackling health inequality, meeting the future housing challenge and building stronger safer communities. 

All very worthy aims and remarkably similar to the 12 basic rights that SCIL adopted 20 years ago. Although at first glance, the agenda just looked like a bunch of worthy aims but with no substance, the DRC has drawn up a list of recommendations for each aim, which hopefully both central and local government as well as others will consider when drawing up their future strategic plans.

It is still unclear how much attention the new Commission for Equality and Human Rights will give to disability issues but hopefully the Disability Agenda will be adopted by the new Commission and others in an effort to effect change over the next 10 years.

Don’t panic. SCIL hasn’t given up on the blog, we’ve just all been really busy working on some new exciting projects – Details to follow.

Blogging is taking off in a big way. We’ve been surfing the blogosphere and have unearthed a few gems that you might want to check out while you’re waiting for SCIL to find time to get back to regular blogging.

Attitudes2Disability is a blog that describes itself as ‘Disability fossilised in myths, literature, theatre, folklore, biography and history’. If the initial short articles are anything to go by, it looks like it may develop into a useful and thought provoking site.

Rob Trent’s blog is an excellent example of a blog writer that lets off steam in his blog but at the same time gives you plenty to think about. His current battles with Hampshire County Council’s FAB team are fully chronicled.

If you’re looking for something on the lighter side, try the Lame Champion Comics blog which features a range of cartoons, many with an impairment angle.

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.

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.