Disabled People: User-led Organisations

Baroness Campbell of Surbiton Excerpts

Wednesday 8th June 2011 Grand Committee

[Baroness Campbell of Surbiton]

My Lords, I, too, thank the noble Baroness, Lady Wheeler, for giving us this opportunity to debate the future of ULOs. I shall try not to get confused and talk about UFOs, because there is a practical joke in the disability movement about this. I shall talk particularly about ULOs and their relationship to the personalisation agenda. I also thank the noble Baroness for her very kind words.

I should start by declaring an interest as a trustee and co-founder of the National Centre for Independent Living. NCIL is one of the largest user-led umbrella organisations in the UK. It pioneered the personalisation agenda long before it was adopted by social care professionals and civil servants—and long before politicians did so. One of the first user-led organisations in the UK was the British Deaf Association, which dates all the way back to the 1890s. User-led organisations have one central principle, which is summed up in the slogan, “Nothing about us without us”. This phrase does not belong in the NHS and did not come from a politician but originated in the early 1980s at an eastern European conference of disabled people. They were fed up with others making wrong decisions about their lives by not involving them, very simply. From then on disabled people's influence over their situation escalated, becoming a social movement touching on all issues that affected their lives, such as transport, access to the built environment, social service support, healthcare, housing and so on. I was very privileged to be a child of that liberating time.

There are now a whole range of ULOs led by all sorts of people who use services, including mental health service users, young and older people, people who have been in care, carers, people with long-term illnesses—not, as many would think, just physically disabled people such as the noble Baroness, Lady Wilkins, or me. That is, not just wheelchair users.

ULOs represent an ongoing challenge to stigma, as they demonstrate not only what service users are capable of doing for themselves but, more significantly, what they can do for society. For example, Hampshire Centre for Independent Living pioneered the blueprint for direct payments, again long before it became part of an Act of Parliament and long before any politician had even heard of the words.

Shaping Our Lives is a notable example of a national ULO. It has been funded by government and NGOs, such as the Rowntree Foundation, to conduct research and evaluation, led by service users. The high quality of its evidence has informed public policy and practice for over a decade. In 2009 alone, it carried out studies and developed practice guidance for the Crown Prosecution policy on witnesses and victims with mental health and learning disabilities, on user-led involvement in social work, and on future housing services for older people. Most of the work is overseen by Professor Peter Beresford. Here is the big society at work.

At this point, Baroness Wilkins continued the speech for Baroness Campbell of Surbiton.

The ULO ethos has been particularly important in the development of personalisation, so much so that it became a key objective in the 2005 Improving the Life Chances of Disabled People strategy, which said that there should be a user-led organisation in every area with social service responsibilities by December 2010. There have been some notable advances, but the funding and policy push came almost entirely from the Department of Health. That funding is now coming to an end, but there are over 60 areas still waiting for a ULO.

Lack of funding, of course, is only one part of the problem. Another has been linking ULOs so strongly with social care services and the Department of Health. ULOs are not solely about social care, and neither is personalisation. The majority of ULOs were established to further the broader goal of supporting disabled people to live independently, working across a range of life areas other than social care: transport, housing, health and leisure. So, if the Government want to deliver the personalisation agenda, ULOs have to be understood, resourced and supported from across national and local government.

The Essex Coalition of Disabled People recently conducted a study, resulting in the report on key issues facing ULOs. Interestingly, it identified the narrow social care approach as one of the major reasons why ULOs have struggled to succeed. I know that the Minister for Disabled People in the other place has been particularly impressed by this ULO as a role model for the future. It and others rightly say that personalisation can be delivered efficiently and effectively only with joined-up thinking and resourcing responsibility.

At this point Baroness Campbell of Surbiton resumed.

I was privileged to chair the Government's Independent Living Scrutiny Group for two years. It looks across government for evidence of this kind of delivery. I know how difficult this is to achieve, but we really need to crank up the mechanisms to do this. Can the Minister tell me what plans he has for this?

ULO personalisation services require an enabling framework that helps them to be more self-sufficient. Small pushes can help—for instance, with the use of the EC Article 19 procurement directive, which allows for public contracts to give preference to businesses with a workforce that is over 50 per cent disabled. If local authorities were encouraged to do this, it would help ULOs enormously in the bidding market. The Essex study and previous research conducted by Leeds University clearly shows that when an organisation involves disabled people throughout, the support costs are higher than for those that do not. The commissioning culture has never really factored that realism into its procurement processes, so ULOs have lost out. Will the Minister assure us he will liaise with the Minister responsible for local government on how this enabling power could be incentivised within local authorities? This will enable ULOs to survive better in the marketplace.

We have heard a great deal about the Government's £3 million over the next four years to help build capacity and support ambassadors. This is welcome, but as I think I have shown, disabled people have demonstrated their ability to provide the solutions to their own problems, against the odds, since as far back as the 1890s. What we need more than ever is money to pay the rent on accessible offices, computers and wages for staff—yes, that old chestnut—infrastructure funding that cannot be found from service contracts alone.

I look forward to hearing from the Minister about the Government’s imaginative plans to help disabled people continue to help themselves and others through the dynamic network of ULOs. Personalisation will never happen without them.