Sixty Second Interview
Ian Loynes, Co-ordinator, Southampton Centre for Independent Living (SCIL)
How many CILs are there?
Not as easy to answer as you may think as there are many organisations called CILs which are local authority institutions and many user-led independent living based organisations which are CILs in effect but don’t call themselves CILs – confusing isn’t it? ! Anyway, we estimate there are about 60 ‘real’ CILs in the UK
What services do CILs provide?
CILs provide a variety of services which are all focused on enabling disabled people to live independently. We define independent living as having choice and control over your own life and a say over what happens to you. These services include direct payments support, personal assistance recruitment support, training for disabled people (personal development) and service providers disability equality training), campaigning, mentoring, advocacy, housing support etc. Different CILs provide different services depending on funding.
How many CILs are run by user-led organisations?
ALL proper CILs are 100% run and controlled by disabled people. CILs are peer based self-help organisations. All CILs are user-led. CILs were at the forefront of the development of the user-led movement.
How many people have benefited from CILs?
A: Impossible to answer, but tens of thousands I’m sure. You could argue that every disabled person who lives independently has benefited directly from CILs as independent living was a concept developed by CILs. Before this, disabled people lived in institutions or with their parents.
How do CILs compare with other provision available?
CILs provide a fundamentally different service to those provided by the statutory sector or traditional charity provisions. CIL services are designed to enable independence, choice, control and autonomy, and to avoid disabled people becoming dependent and reliant on the service provider. CIL services empower disabled people to understand their rights using the social model of disability. CILs help disabled people understand that what prevents them having the same opportunities as non-disabled people is the failure of society to meet their needs because of discrimination on the basis of impairment. CILs support disabled people to be aware of the barriers there are which prevent them having equality and to support them to remove these barriers.
Why are CILs being forced to close?
CILs and many other user-led organisations are being force to close as a result of local authorities tendering out the peer-based services we provide. Local and national governments recognise and trumpet the value of user-led organisations and particularly CILs. Many new policy documents (notably the recent “Improving the Life Chances of Disabled People” report by the Prime Minister’s Strategy Unit) recognise that CILs and user-led organisations have been and will be critically important in enabling the implementation of the modernisation and empowerment agendas for disabled people. Despite this recognition, CILs are not resourced by local authorities and therefore only exist by running services through LA funding or from funds like the National Lottery.
Why is closure such a bad thing?
CILs provide unique services which are based on the principles of peer-support and empowerment. Services like direct payments support, which CILs provide, are now being tendered out by local authorities where price is the overriding criteria. Issues like self-assessment, advocacy, peer support, empowerment and the many other fringe benefits that CILs provide for free are not valued or recognised by tenders. As a result it is easy for non-local, non-user-led organisations to under-bid CILs and provide cheap lower quality services. As a result, CILs are lost and many of the well documented benefits of user-led services become a thing of the past. Direct payments are only effective because they put a value on these ‘added value’ issues – once these are excluded from contracts, direct payments become just as disempowering as many other services.
What evidence is there to show that local authorities are removing funding for CILs because they want “cheaper” alternatives?
In our experience when local authorities talk about “cost effectiveness” the emphasis is on the “cost” rather than the “effectiveness”. They are not concerned enough about the organisations that provide services as long as they meet the specification. Overwhelmingly, local authorities are trying to cut the cost of services and care packages that disabled people want and need if they are to live independently and become empowered enough to see work as a viable option. Support for self-assessment, advocacy, peer-support and other key features of schemes like direct payments are being withdrawn from service specifications for spurious reasons that all come down to local authorities trying to save money. The empowerment and quality of life aspects for disabled people are increasingly becoming side issues that local authorities don’t want to pay for.
What are the benefits of having user-led organisations running CILs, and what has been their contribution to the independent living agenda now being pushed forward by government?
It is now accepted that empowerment happens best via peer-based services as disabled people are more likely to feel empathy with each other and see each other as role-models. People become empowered by working together on common issues to resolve the barriers they face. User-led organisations like CILs ‘invented’ direct payments because users understood what they didn’t like in the traditional services that had been provided to them. Without these organisations, direct payments would not have happened FACT. CILs developed the principles of independent living. Non-disabled people constructed traditional services that disempowered disabled people. Disabled people have developed every service that now empowers them.
Has the contribution of user-led organisations been adequately recognised, or has the government stolen your thunder?
Many recent policy papers talk about the important contribution users have made to the modern services they wanted. However, whilst talk is OK, what matters is action. Disabled people and their organisations have always found it difficult to get a voice or resources. The big charities and government have realised it is ‘sexy’ to use (and often misuse) the language. They talk-the-talk, but don’t walk-the-talk. In reality, user-led organisations are seldom asked what they think and have to make do with a few ‘crumbs’ in the funding stakes.
What do you think needs to happen to ensure that CILs survive?
Government and local authorities need to understand and recognise how important CILs are to disabled people’s empowerment and to the development of progressive services that people actually want and value. These attributes have to be valued and resourced. If this happens then CILs and other user-led organisations will continue to drive for change and cost-effectiveness to be seen as a holistic issue. Cheap services serve little use and are ineffective for empowerment. Institutional services are expensive and waste disabled people’s lives. If we don’t recognise and fund CILs and other user-led organisations, the voice, expertise and wisdom of service users will disappear. We are loosing our organisations all the time, our voice is weakening. As a result, services are starting to revert to the old fashioned disempowering model we all rejected in the 1980’s. The Government wants a CIL in every local authority by the year 2012 but at this rate we will not have any in a few years. This really is a critically important issue for the whole of society.