Disabled People: User-led Organisations

Baroness Wheeler Excerpts

Wednesday 8th June 2011 Grand Committee

Asked by

[Baroness Wheeler]

To ask Her Majesty’s Government what plans they have for the continued support of user-led organisations that support disabled people and the personalisation agenda.

[Baroness Wheeler]

My Lords, I am delighted to have secured this debate. As one who is still very much a newcomer to your Lordships' House, I am proud that this subject marks my first success in obtaining a QSD and realise that patience really does pay off. I am also pleased to have supporting the debate noble Lords who have done so much to campaign and support disabled people. I particularly want to thank my noble friend Lady Wilkins, my office mate and a great inspiration, and the noble Baroness, Lady Campbell, whose work and contribution to championing the right of disabled people to take control of their own lives is fully recognised by the House. I pay tribute to her formidable record and achievement, but also for personal reasons. In 2007 I became the carer of my partner, who is now disabled. I was fortunate enough to have a very good friend who put me in immediate touch with the noble Baroness, Lady Campbell, and her help and support was invaluable. She introduced me to the work and role of user-led organisations. The subsequent support that I have had from advisers in local ULO groups in Surrey, where I live, has been so important, helping me navigate the minefield of information and pathways to health and social care provision for users and carers. What really helped was that I was talking to advisers who were themselves users of the care and health systems that they were advising on or signposting to. This is one of the key strengths of user-led organisation, and what led the Labour Government to make a major investment in their continued development and to ensure that they had a key role in the transformation of social care and personalisation agenda.

The Social Care Institute for Excellence emphasised that personalisation starts with seeing the person as an individual with strengths, preferences and aspirations and puts them at the centre of indentifying their needs and making choices about how and when they are supported. ULOs for disabled people are organisations where service users determine their own needs and planning support and themselves have expertise which they utilise in the advice and services they provide. SCIE underlines the importance of ULOs having a rightful place in the social care and community marketplace, promoting equality and reaching out to people who need social care support, especially supporting marginalised people.

Personalisation goes beyond giving personal budgets or direct payments to individuals, and ULOs help to ensure access to the right information, advice and advocacy. This is why the Labour Government invested heavily in promoting the setting up and development of ULOs for disabled people, and provided substantial support funding for local authorities to invest and work with them. Under the transformation of social care agenda, ULOs have developed a particular role and expertise in supporting people using direct payments or personal budgets, assisting with the self-assessment process and in the recruitment and employment of personal assistants for disabled people. This is a key role for a number of ULOs, and there are many excellent examples of ULOs working with local employment advice organisations and trade unions to ensure fair pay rates and good employment practice, standards and conditions for personal assistants.

There is no national data collection on the number of ULOs, although I understand the National Council for Independent Living, the umbrella organisation for ULOs, is currently undertaking a sector audit, which will give a much needed clearer picture. ULOs by their very nature are developed locally to reflect community needs. The strong support for ULOs by a number of local authorities has been in the form of direct grants and contracts to provide services, including information provision, advocacy and supporting self-directed care programmes. My own area in Surrey has a strong ULO organisation in the excellent Surrey Independent Living Council, the Surrey Disabled People's Partnership and the Surrey Coalition of Disabled People. These groups are typical of ULO organisation, in that they are active groups in themselves as well as the umbrella supporting groups for local hubs representing a range of specific health or disability interests, such as Surrey's Vision Action group, or the Surrey Deaf Forum or the Surrey Autism Partnership Board.

This is just one local authority area where strong ULO organisation has had a major impact on the development and shape of services, and there are many similar local examples of the work and impact of ULOs of disabled people which I am sure noble Lords will highlight in this debate. However, direct government funding to ULOs ceased at the end of 2010, when the 2008-10 programme ran out, although some funding is still provided to the NCIL under Section 64 powers and through the Office for Disability under the Right to Control trailblazers work. In the current climate, for ULOs to survive, to continue to undertake their vital role and for their operation to extend into other localities, there needs to be continued and active support at a national level.

There is increasing concern at the impact of cutting the current local authority grants and contracts with the ULOs. The Disability Rights Partnership has highlighted, for example, the recent closure of DPAN Northamptonshire after two other non user-led organisations won contracts for work it was previously involved with. This came shortly after the demise of another user-led organisation, Ability Northamptonshire. Cutting grants and shrinking contracts will only shrink the potential pool of providers at a time when it needs expanding.

I would like to ask the Minister how the Government will ensure that commissioning requirements create a level playing field between small user-led mutuals and organisations and their larger either voluntary or profit-making counterparts. Existing commissioning services favour large providers and often overlook the added value of ULOs. This inhibits user-led entry. Commissioning requirements should provide a level playing field for ULOs, including accessibility in bids and tenders. ULOs face entry costs due to disability-related expenditure and other barriers for which they need to be supported to overcome. Service agreements, payment by results and preferred provider lists need to be reviewed and sub-contracting to micro-providers needs to be incentivised. We need to ensure that ULOs have the requisite capacity and support to enable them to bid for key public service contracts.

I welcome the Government's recent announcement of the ULO fund of £3 million for disabled people's organisations and would like to ask the Minister how it will be administered and how disabled people will be involved in its design and implementation. Also, what other measures will the Government be taking to encourage innovative social enterprise by ULOs? The ULO fund, while welcome, amounts to little more than £5,000 per year per local authority in England for the next three years.

Also, within the Government’s plans for localism, the big society, the right of independent living—and within their oft-repeated mantra that local authorities must make their own decisions on local priorities in the light of local needs and resources—I ask the Minister what steps they will take to encourage local authorities to co-produce innovative services with ULOs and to support service provision by way of user-led social enterprise.

Can the Minister advise how the services relating to the personalisation of social care, which the Government continue to support and is currently provided by ULOs, will be provided where ULO funding has been cut or stopped? These services include essential advice and administrative support for people using direct payments and personal budgets and for users employing personal assistants.

I close by paying tribute to one of the pioneers of the independent living movement and of user-led organisations who died recently, Nasa Begum. I did not know her personally but I do know about her enormous contribution and inspirational work. Nasa was a professional social worker and she brought her professional skills and personal charisma and energy to the first National Centre for Independent Living. As a disabled woman from a BME community and also a mental health services user and “survivor”, Nasa particularly championed the greater involvement of BME communities in the creation of more inclusive communities. She was a prolific author of many books and papers and her book, Towards Managing User-led Services, had a major impact in providing the framework for a new partnership approach which encouraged all sections of the community as active partners in designing services and support that are personalised and culturally appropriate. I am sure noble Lords will join with me in paying tribute to Nasa and expressing our sorrow at her untimely death.