Southampton Centre for Independent Living

SCIL are hosting an online Independent Living Discussion Group in their chat room on Tuesday 9 October from 2.30pm to 4pm.

Topics that may be discussed include Self Directed Support, Our Lives Our Choices campaign, closure of the DRC, Hampshire’s consultation on ‘Improving Direct Payments’ as well as anything else people wish to chat about. Anyone, no matter where they live, is welcome to join in.

We look forward to seeing you there, but if anyone has any queries, then email me at Robert@southamptoncil.co.uk and I will try and assist.

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

This article was written by Hazel Peasley.

Below is a statement taken by a network/consortium of Disabled People’s organisations called “Our Lives R 4 Living”, to the recent national consultation day organised for the Department of Health, by the Care Services Improvement Partnership (CSIP). 

The event was held to discuss and consider how best to achieve the successful implementation of Recommendation 4.3 of the Cabinet Office report published last year called ‘Improving the Life Chances of Disabled People’. 

This recommendation of the report called for the establishment of Centres for Independent Living (CILs) in every local authority Social Services area by the year 2010. At the end of the day long consultation event, an indicative vote was taken on the below statement.  No one voted against it.  This is despite such organisations as carers’ groups and charities like Scope and the Rowan Trust raising objections to it. 

A substantial number of those present, including a number of people representing such organisations not controlled by Disabled People, protested at the limited time available before the Department of Health concludes its consultation process on this important issue, by abstaining on the vote.

As is inevitable when such a short time exists to consider and decide on such matters (there has only been a total of six weeks for this consultation exercise) a number of drafting amendments
were suggested from the floor by those at the event.  Only one such amendment, proposed by Richard Downes representing the Disabled People’s organisation Brent Advocacy Concerns (BAC), was added to the statement and appears at the end as ‘Number 3′.  This amendment was accepted by those proposing the main statement on behalf of “Our Lives R 4 Living”. 

Other versions of this statement which take into account various of these other minor changes discussed but not voted upon, have been circulated since the event, but for clarity I am only posting here the one actually voted upon and passed at the meeting (which included the amendment proposed by Richard Downs). 

The below statement, adopted by the meeting, sends a clear message to Central Government about the views of Disabled People and our organisations concerning this very important matter.  

The statement reads:

‘We understand the clear distinction which exists between organisations led by people eligible to access services (sometimes referred to as User-Led Organisations or ULOs) and organisations routed firmly within the Disabled People’s Movement (referred to as organisations OF Disabled People). These latter groups, whilst being led by people eligible to access services, are distinct because they apply social model principles.  These groups are owned, led, managed and staffed in the majority by Disabled People; they are usually cross-impairment with strong principles of democratic accountability.

There is a clear role for User-Led Organisations (ULOs), which are not members of the Disabled Peoples Movement, e.g. some carers’ and children’s organisations or those set up to enable involvement within a particular service.  Such organisations are not the same in character as those which the ‘life chances’ report sought to promote (’Improving the Life Chances of Disabled People’, January 2005).

‘Improving Life Chances’ laid down a clear principle that there should be an organisation of Disabled People modelled on Centres for Independent Living (CILs) in every locality (local social services area) by the year 2010.  A CIL is a social model based, cross-impairment organisation, owned and controlled by, and accountable to, the Disabled Community.  A CIL supports
Disabled People to live independently through peer support, campaigning and providing user-led services.

This meeting strongly supports the establishment of such organisations and believes that this will be a vital contribution to ensuring that genuine and authentic independent living services exist for Disabled People by maintaining the independent voice of the Disabled Community.

This meeting affirms that for such Centres for Independent Living to be successful, effective and sustainable, they need to be underpinned by social model principles and accountable directly to the local communities from which they spring and seek to serve.  ‘Top-down’ structures imposed centrally are destined to fail.

This meeting proposes to the Department of Health (DoH) that existing Centres for Independent Living and other parallel social model based organisations, owned and controlled by Disabled People at a local level, are best placed to support the widening of Centres for Independent Living.  A consortium of such organisations should be resourced by the Department of Health to ensure the effective establishment of independently funded Centres for Independent Living across the country.  To this end, a working group of CIL representatives should be set up without delay and resourced by the Department of Health to found such a consortium and draw up detailed implementation plans for the establishment of Centres for Independent Living across the country.

Finally, this meeting firmly believes that the current consultation exercise being conducted on behalf of the Department of Health to ascertain the views of ULOs regarding the establishment of Centres for Independent Living in line with ‘Improving Life Chances’, is to be welcomed.  However, if the momentum of the process is to be maintained and the 2010 target is to be achieved, this meeting believes that transparency, openness and accountability are all essential.  For this reason, the report produced as a consequence of the current consultation exercise must be published and shared fully with Disabled People.  This will help the process to be meaningful, genuine partnerships to be built and trust to be maintained.

This meeting therefore urges Department of Health to demonstrate its support for and commitment to this important agenda by:

1. Agreeing to support and resource adequately the establishment of a resourced network of existing Centres for Independent Living with a view to ensuring that they play the leading role in delivering new Centres for Independent Living in areas where they do not exist yet.

2. Publishing without delay, the full report of the current consultation exercise, including any recommendations, conclusions and proposed actions suggested as a consequence of this process.

3. Prioritising the funding and re-enervation of existing organisations OF Disabled People with a proven commitment to the inclusion, independence and equality of Disabled People.

The Radio 4 “Today” programme is running a ‘Christmas Repeal’ where they are asking listeners to write in or email suggestions of any laws that listeners feel should be repealed. A panel of politicians and legislation experts will shortlist six suggestions which will then be put to the public vote.

Jim Elder Woodward, Director of Glasgow Centre for Inclusive Living, suggests that there should be an end to community care charging and suggests that if enough people draw the panel’s attention to the unfair policy, it may be put on the short list and then it will be featured on the ‘Today’ programme.  

The legislation that needs to be repealed is section 17 of the Health and Social Services and Social Security Adjudications Act 1983 which states authorities may make reasonable charges for domiciliary services. 

It is important to note that this legislation in no way insists that local authorities charge for these services, however all local authorities do now charge for at least some domiciliary services. The effect of this is that thousands of disabled people and older people are being charged simply because they may need support with basic living tasks, such as dressing and washing. 

Following many complaints regarding the variety and complexity of charging policies being adopted by local authorities, the Department of Health issued statutory guidance in 2003 called ‘Fairer Charging Policies for Home Care and other non-residential Social Services: Guidance for Councils with Social Services Responsibilities’ 

This guidance was meant to ensure that if local authorities chose to charge, that it was done in a fair and equitable way, however this guidance has only encouraged more local authorities to introduce or extend charging, using the ‘equity’ argument.

Local authorities tend to argue that the amount of funding they receive from central government is calculated on the assumption that they will receive revenue from charging, so they have to continue charging. Central government argue that it is up to local authorities whether they charge, so there is nothing they can do. Whilst central and local government blame each other, it is Disabled People who pay the highest price for this immoral legislation.

So, this Christmas, instead of sticking some change in a charity tin, lend your support to our campaign to get community care charging repealed by adding your voice to the ‘Christmas Repeal’.

On Saturday 2nd September, campaigners from around the country gathered in Trafalgar Square to launch Our Lives R 4 Living Campaign at the Liberty Festival.

The main aim of the campaign is to raise awareness of and support for the Independent Living Bill. This Bill is increasngly important as many local authorities are considering raising the eligibility criteria which will force many disabled people to rely on family and friends or move into residential ‘care’.

Throughout the day, we asked Disabled People to write their stories and slogans on a roll of cloth which we hope to take around the country and collect as evidence that a ‘Right to Independent Living’ is needed.

We also asked people to sign a petition supporting our campaign and collected over 200 signatures.

This is obviously just the start of the campaign so please get in touch if you would like to get involved.

In an effort to publicise Our Lives R 4 Living campaign, we have joined the BBC Action Network website. The website highlights campaigns, both large and small, local and national, and allows people to lend support to the campaign or to comment on why they oppose the campaign.

As well as joining the BBC Action Network, we have been busy designing banners, printing flyers, and making T-shirts. We have also received over £100 for our fighting fund so far.

With only a week to go before our launch event on the 2nd September, it really feels like things are gaining momentum.

This is a new campaign led by Disabled People’s organisations to establish a right to Independent Living. A new Independent Living Bill is currently being debated in Parliament which outlines a rights based framework for Independent Living and also sets out rights for Disabled People living in residential care and issues around accessible housing and inclusive planning.This legislation is increasing important as local authorities are making their eligibility criteria tighter and tighter. This means that Disabled People are having their support packages cut or withdrawn all together. Often Disabled People are now having to rely on family and friends in order to do the most basic living tasks such as washing, dressing and eating.

From December 2006, all public authorities will have a duty to promote equality of opportunity for Disabled People. This is called the Disability Equality Duty. The duty requires authorities to publish a Disability Equality Scheme and Action Plan and involve Disabled People in the development of this. Authorities must also demonstrate that they are actively following the action plan, achieving outcomes and reviewing and revising the scheme.

We do not feel that Disabled People are being adequately involved in developing these schemes and action plans.

The Government are planning yet another change to the Benefits system. We are angry that Disabled People are having their benefits threatened which will affect their livelihood.

We are also very concerned that many Disabled People’s organisations are being forced to close due to cuts in funding. This goes against the government’s rhetoric that it wants Disabled People to be involved in developing and providing services to other Disabled People.

We need as many Disabled People to support our campaign and hopefully come along to our launch event on Saturday September 2nd. We will be meeting at 12.30 at the Liberty Festival in front of Admirality Arch at the entrance to St James Park close to Trafalgar Square. Please come and join us if you can. We will be dressed in rags and chains to show that it is very difficult to live independently because we do not have enough support to have freedom and choice.

We want make a big picture of the things that stop us being independent that we can show to people who make decision that affect our lives and need you to bring your stories with you to add to our picture.  We are suggesting something written or drawn on a piece of cloth about the size of a pillow case which we can add to a roll of cloth.

If you would like to know more about what we are doing or about what is happening on the 2^nd September please contact Chris Hughes at Derbyshire Coalition for Inclusive Living on 01298 812535 /  01773 740246 chip.6361@virgin.net

Fighting fund - we will need money to help us with this campaign.  If anyone or any organisations would like to give some money to help please contact Hazel Peasley at Southampton Centre for Independent Living on 023 8020 2627 or hazel@southamptoncil.co.uk

If you can’t make it on the 2^nd September contact us and we can talk to you about how you could support the campaign locally