Disabled People: User-led Organisations

Baroness Wilkins Excerpts

Wednesday 8th June 2011 Grand Committee

[Baroness Wilkins]

I, too, thank my noble friend Lady Wheeler for her kind words, and for securing this debate on a subject that, at its heart, is one reason why I became a Member of your Lordships' House. I declare an interest as vice-chair of my local borough disability user-led association—Hammersmith and Fulham Action for Disability, or HAFAD. I would like to say how delighted we are that, following the debate on 5 May, the Minister accepted our invitation to visit.

I became disabled the year the Disablement Income Group, known as DIG, was formed by two women who had developed MS and found that they, and thousands of others, had no right to any income support. That was 1966. That user-led organisation is seen by many as the start of the disability movement in Britain, a movement that has led millions of disabled people to recognise that our position in society is politically driven and that society could be changed to accommodate our needs.

Unless you have experienced disability, you cannot understand its daily living reality, and I came to it with the same ignorance as most non-disabled people. DIG, a mass movement of people over the whole range of impairments, was fighting for the extra costs of living with a disability to be recognised and for an income benefit to be given regardless of the cause of impairment. There were rallies in Trafalgar Square, petitions to Parliament and lobbying of Ministers. DIG introduced me to political campaigning, but, most importantly, it welcomed me to a world of people who had faced and were living with the same experiences as me. It was to those people whom I turned for help and information about housing, about how to get around, about places that were accessible and about how to find equipment that I could use, whether it was an accessible car or a manageable ironing board. My fellow disabled people had been there before, knew the real barriers to be overcome and had found solutions.

It is this shared lived experience that is the unique value of user-led organisations. It is a value to which policy-makers pay lip service but which is far too easily overlooked and jettisoned when it comes to the crunch, especially funding. It is very hard to convey how important this is, but it provides a quality of help and support that no one else can give. The noble Baroness, Lady Wheeler, has eloquently expressed how important it was to her. The Government need to understand and constantly reinforce its value if services are truly to meet people's needs.

This is the unique value of the small user-led local organisations for disabled people such as HAFAD, many of them centres for independent living. As the noble Baroness, Lady Campbell, said, its importance was recognised by the previous Government's Strategy Unit report, Improving the Life Chances of Disabled People, which recommended that there should be a user-led organisation, modelled on existing CILs, in every social services area by 2010. Does the Minister still see the value of that recommendation, and would he support it?

I shall concentrate on the experience of these small local organisations and on what the Government can do to support them. The local disability organisations have been the drivers in developing the independent living services throughout the country. The take-up of direct payments succeeded because user-led organisations understood what was needed in order for them to succeed. They provided the necessary assistance in recruiting and employing personal assistants, payroll services, information, advice and advocacy, but, crucially, they provided the confidence through peer support and local networks.

Since direct local authority grants dried up, HAFAD, like many borough organisations, has derived the majority of its funding from providing these services to the council through service level agreements. However, the larger profit-making providers see the market in this work and constitute a major threat to our existence. With their lower overheads, they can undercut small user-led organisations such as HAFAD.

Now, to save money, local authorities are increasingly banding together to award contracts. Currently, HAFAD's direct payment support service is faced with the prospect of tendering for a new contract to be spread over four boroughs—Hammersmith and Fulham, Kensington and Chelsea, Brent, and Hillingdon. It would be impossible for us to cover that area or for anyone to provide the essential local support.

One of the most important things that the Government can do is to ensure that the importance of local user-led support is given its proper value in competition for contracts. Perhaps I may echo my noble friend Lady Wheeler in asking the Minister what the Government will do to ensure a level playing field between the small user-led organisations and their larger, profit-making counterparts when it comes to commissioning.

HAFAD’s excellent employment project, which was succeeding in getting disabled people who had never had any prospect of work into work after long periods of unemployment, has already been lost to the big contractors that won all the Work Choice and Work Programme contracts. As a result, we had to lay off all the staff except the manager, and we are using the organisation’s reserves to fund his search for subcontracts. In west London, the Work Choice contract went to Seetec, which has subcontracted to Leonard Cheshire, among others. Leonard Cheshire has now approached HAFAD for help with its delivery in west London and has asked for training in our access-to-work expertise, as it does not have specialist knowledge. So the user-led organisation is bled dry of funds and staff, while supporting others to provide a service, when it could have been given the security of a contract in the first place. User-led organisations can provide this expertise only if it is properly recognised and valued, and the Government could have helped by making it a requirement on the winning contractor to work with specialist organisations at a local level.

The problem is that the small user-led organisations survive only by a jigsaw of funding of these projects. If one project goes to the wall, it undermines the framework of the whole organisation because it is almost impossible to get funding for the running costs of an organisation either from trusts or local authorities, so a charge has to be made on each project to cover those costs. If a major project is lost, the whole organisation becomes vulnerable. Yet the organisation has to have a director and finance officer if it is to be competently managed and have proper financial control. Can I ask the Minister whether the Government have any plans to address this problem?

Like many organisations, HAFAD has been trying to become self-sufficient through social enterprise schemes and partnerships. Not only is there the problem of the extremely stretched management framework of the organisation, which leaves little time to develop social enterprise, but small user-led organisations have no assets to provide collateral for bank loans. Major fundraising requires a massive investment of time, and these organisations can turn only to government to provide the seed money required. I hope that the Government are listening.

I add my tribute to Nasa Begum for her wonderful contribution to spreading understanding of the value of user control, and most especially for being the only wheelchair user I have known who went bungee-jumping in a wheelchair in Australia.