Queen’s Speech

Baroness Wheeler Excerpts

Tuesday 14th May 2013 Lords Chamber

[Baroness Wheeler]

My Lords, I should like to speak on the Care Bill, which, as my noble friend Lord Hunt has stressed, is recognised as an important step towards providing a consolidated legislative framework for our social care system based on the excellent report from the Law Commission, which we established to streamline and unify social care law. The Bill implements 66 of the commission’s 77 recommendations, refocusing care and support on more patient-centred services that are better suited to people’s lives and needs, with well-being as the guiding principle. We strongly support this; it takes forward our work on patient choice and control and builds on the progress we made in key areas such as prevention, personalisation of services, carer recognition and support in our landmark National Carers Strategy. It also addresses many of the “unfinished business” issues that we proposed in our 2009 national care service White Paper.

Like other noble Lords. I commend the pre-legislative scrutiny work of the Joint Committee. The Bill, as seen in the stakeholder evidence to the committee, enjoys considerable support among patients, carer organisations, staff, service users and providers, with, of course, the key proviso that major improvements are needed to address what the committee itself identified as the “gaps” and “risks of unintended consequences”, and the wider issues relating to both the NHS and social care. For all the widespread support, however, the gentle language of a cross-party report expressing the committee’s concern that the Government,

“has not yet fully assessed the scale of change the Bill will bring about”,

speaks volumes. It is a message that we on these Benches, along with care and support organisations across the statutory, private and voluntary sectors, have been trying to hammer home since the draft Bill was introduced. It is not just about the “new costs” impacts of the Bill itself that were cited by the committee, such as those resulting from the huge increase in the number of care assessments under the new capped system; the Government also need to recognise the scale and urgency of the current care crisis and that their proposed Dilnot solutions need to extend to self-funders, the millions of people with limited means and those who are unable to pay for adequate care and support.

The Government know that the proposals will not stop people having to sell their homes to pay for care, will not cap the costs that elderly people pay for residential care, and will not mean that pensioners get their care for free if they have income or assets worth up to £123,000. From the outset, we have underlined our concerns that unless the new legal framework is introduced in the context of also addressing the current and future social care funding problems, it runs the danger of raising expectations and demand that cannot be met, and will be ineffective and inoperable. This view is underlined by leading stakeholders, including Age UK and the Care and Support Alliance. Council care budgets are being cut to the bone, with the latest figures from ADASS identifying a further £800 million squeeze on social care budgets over the next year. I know that the noble Earl insists, despite all the evidence, that local authorities have sufficient funds to meet the current demand, but this is just not so.

London Councils is a cross-party organisation representing 33 London authorities. Its recent report, A Case for Sustainable Funding for Adult Social Care, based on financial modelling by Ernst & Young, researched the scale of savings that could be achieved through greater efficiencies such as integrating services, implementing alternative delivery models and making major changes to care delivery and procurement. Even with maximum savings and before the introduction of any form of Dilnot implementation, the Government would still need to increase London’s adult social care budget by potentially £1.1 billion to meet increased demand. Labour supports the principle of capping care costs, but we stress that a bigger and bolder response is needed by the Government to meet the challenges of our ageing population. Whole-person care is our vision for a 21st century health and care system that brings together physical health, mental health and social care in a single service to meet all a person’s care needs. Our independent commission has already started its work on looking at how health and social care services’ budgets can be brought together so that integrated services do not mean just a series of area or service-specific initiatives and pilots, but a way of working for a whole service. We have a major task ahead of us to improve the Bill, and Labour pledges its commitment to work hard to make sure that older and disabled people and their families get the best possible deal.

On carers, the House should note that the need to ensure their well-being is particularly underlined in the report of the Royal College of General Practitioners, which was published this weekend. It finds that 40% of carers are at risk of depression and should be regularly screened for this to ensure that their health needs are not neglected. We see a similar picture in the recent survey by the Stroke Association, Feeling Overwhelmed, which shows the potentially huge emotional impact of stroke on both survivors and their carers. The Bill is an important step forward in the development of carers’ rights, their recognition and the support they need, which we strongly support. In the coming weeks, it will be important to keep in mind just what demands we already make on carers. Some 7 million people currently provide carer support to a disabled or sick child or adult who otherwise could not live independently in the community.

As a carer myself, I am about to go through, with my partner, the final push under Surrey Council to convert all social care clients with long-term health conditions to self-directed support. We have a 46-page assessment form to complete, a host of supporting leaflets and briefings to read and absorb and, of course, a website, which I am sure will make us even more confused. This considerable task and commitment is the same for both self-funders and people receiving local authority support. Most frequently, it will probably be the carer who has to do most of the work, bear most of the responsibility and, probably, be most aware of and concerned about the potential effects if services and care packages are changed or, worse, withdrawn. That is certainly true for carers such as me, caring for a stroke survivor whose aphasia makes it difficult for him to read and understand forms and documents, and impossible for him to complete them himself.

Having said that, and to end on a positive note, the good news is that my experience so far is overwhelmingly that self-directed, personalised support and this approach to identifying future care needs for the cared-for and the carer is the right one. We need to ensure, as we work our way through the Bill, that the focus of the assessment is on well-being and support, and not on cutting back care packages that are generally working well and have taken many months and years of persistent effort to build up.

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.