(13 years, 5 months ago)
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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.
Lord Addington
My Lords, when I saw on the Order Paper the subject we are debating today and put my name down for it, I immediately thought of one thing: that it is sensible that user groups,—the people who suffer from disabilities—should be heard first. This is for selfish reasons for everyone else because, if you get a good idea of what the problems are, you stand a chance of taking the right action to address them quickly and concisely and thus save the costs involved in getting it wrong. Mistakes can, in certain cases, result in legal activity and often mean that the benefits and medical services have to pick up the pieces further down the line. Wear and tear on carers is another consideration. It is trying to get an understanding of where most mistakes in the system tend to be made. It is safe to say that there is good will from everyone involved, but people often make decisions and try to implement them but do not quite understand how to do so. They then find themselves in a corner and without the right amount of communication to be able to back off when they have made mistakes.
This is a Treasury Bench problem, no matter who is in government. The previous Government did their best to try on occasions. Sometimes they got it wrong, sometimes they got it right. I do not think at any point they were looking to get it wrong. We who have been giving advice in Parliament, through the contact we have with outside groups, have been able to reassess what is going on. Occasionally fashions in ideas may change but mainly it is based on practicality. That way we avoid those “does he take sugar?” mistakes. That way we try to get the correct information to those who are in power and making those decisions. User-led organisations are often a very good way of addressing these problems. They are not a magic bullet—in my own world of dyslexia, I have often met people who say, “We will do everything”. I am afraid dyslexics do not make terribly good secretaries of groups or good managers of diaries. People must make sure that they learn to ask for help; there have been occasions when they have failed by not being prepared to ask for enough help. If you experience problems, you will know when to ask for outside help and when to do something. We are talking about people with disabilities and once again—I have said it dozens of times and I will say it again—if any dyslexic says to me, “I am differently abled, not disabled”, I hand him an insurance form to fill out quickly and under pressure. When he has failed at that I say, “This is why we have legislation, this is why we have a framework, this is why we do the stuff we do. You are going to have to try to access support and help”. If we are going to fulfil our agenda of getting people into jobs, we must make sure people know how to give the correct assistance at the right time. We must talk to those who understand the problems to find out the correct way to make a change.
Having said all that—and here endeth the sermon—I say to the Government, “What are we doing to make sure you drag in this pool of expertise to make the job of Government easier?”. That is the big question. If we are not to continue with the previous model, how else do we do it? The noble Baroness, Lady Wheeler, spoke about sub-contracting and feeding into smaller groups as one way forward. Making sure that people who apply for these support jobs actually have contact with disabled people, and that it is seen as a benefit, would be a very sensible way forward. Thus, you may be able to combine the best of both worlds. Cats and skinning come to mind here, but it is making sure we get the correct information in. Those groups with outside experience will always have at least a very useful perspective on how to do this. We should also study how this will get through to the interface.
The noble Lord, Lord McKenzie, has had experience of this and I would be interested to hear what his take is from his own experience in office, when we had to deal with similar problems. I hope the noble Lord, Lord Freud, will not think me presumptuous by saying this is one occasion when you should listen to your political opponent because he has experienced it for quite a long time and indeed I bored him for a quite a long time on these and similar subjects. How can we encourage that interface? How will we make sure that we work properly to drag in the information? If we do not, we will make costly mistakes that will sometimes end in litigation and will always end in on-costs further down the line. How can we encourage people—and this is the big challenge to operators—to say, “I do not know the answer, can I go and get somebody who does?”. I find this is one of the most difficult parts of dealing with any government official, encouraging them to say, “I do not know, I will find out, let us figure out something else”. This is something that is very difficult to do by diktat. It is almost counterintuitive but it is vital to make sure it works properly. If the Minister can say something on this subject I will be eternally grateful.
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.
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.
Lord Ramsbotham
I, too, thank the noble Baroness, Lady Wheeler, for obtaining this debate. I shall be brief. I declare an interest as a former adviser and now vice-president to the former Sainsbury Centre for Mental Health—now the Centre for Mental Health—because I wish to comment particularly on the mentally disabled. I want to concentrate on an area in which the treatment of the mentally disabled is not good, has not been good, but—it has been announced—is going to be better. My concern is that what appears to be happening in the user-led agency is likely to deny a way of putting that right. I refer to the well of psychiatric morbidity in Her Majesty’s prisons, where it is reckoned that at least 70 per cent suffer from some form of identifiable personality disorder—and some a great deal worse.
For the past four years, the centre has been concentrating on two aspects of work—the treatment of those who are mentally disordered in prisons, and the problems faced by those with mental disorders in obtaining employment. The employment issue is linked with prisons, but the centre has more generally been looking closely at the employment of people with mental health problems in the community. It has become abundantly clear that the key area for achieving independent living for the mentally disabled is employment, and that the best way of achieving that is through individualised support based on their sort of sustainable lifestyle and what they can actually do. That requires careful identification and then placement. The Centre for Mental Health is currently supporting nine centres of excellence, which are using an individual placement and support model across the country. That model is based carefully on this business of finding out what each individual needs. What also applies to it is having people trained as individual placement and support workers who have been attached to user-led and other organisations because they can advise those organisations on how best to look after people who come and work with them.
One problem in prisons at the moment is that no structured mental health treatment is available for this vast number. I was much heartened by the Government's paper, Breaking the Cycle, in which the Justice Secretary said that they were at last going to tackle this problem. Indeed, I have had discussions with the Department of Health as to how this might be done. However, having heard what the centre had come across, particularly about the user-led organisations, one idea that struck me was: what better thing to do than to localise this by employing local user-led organisations to go into prisons and help people who, after all, will come out of prison and whose employment will be out of prison. I was therefore very concerned when I heard that there were threats to the user-led organisations, which looked like being one of the key tools in resolving a problem.
I was encouraged to speak because one of the great messages that I got from the Sainsbury centre was that my noble friend Lady Campbell was challenging the Government on the cuts that were being imposed and asking them to spell out the impact that they might have on user-led organisations. Always being happy to support my noble friend, I felt that I would add this other area, which I would be most grateful if the Minister could look into—not least to alert the Ministry of Justice that there is a potential problem here, which could be solved before causing more problems than it deserves.
Lord McKenzie of Luton
My Lords, I thank my noble friend Lady Wheeler for securing this debate today. I did write out a bit of a script, but having just listened to some powerful contributions I think I will discard most of it. My noble friend says that this is her first Question for Short Debate; I feel sure and hope that it will not be the last. I was particularly pleased when she referred to Nasa Begum and the work that she has done, because when we talk about social workers it is all too often when there is a problem and somebody is being challenged. There are many people in that field who do fantastic work, day in day out. They are unsung heroes and it is nice to have an opportunity, even given the circumstances, to be able to join in the praise for somebody who has achieved a great deal.
When I saw that the list of speakers contained the usual suspects, I knew it was going to be a powerful debate. If there is any benefit in not being a Minister, it is that I am not responsible for answering such questions these days. Picking up on a couple of points in the contributions so far, I agree with the noble Lord, Lord Addington, that it is generally not about lack of good will. Government policymakers and local government do not set about their task to get it wrong or to damage and hurt people. It is about understanding. The noble Lord talked about the need to encourage an interface. If he was looking to me for pearls of wisdom on that, I may disappoint him but there is no overall prescription for how you deal with it. You have to work at it hard and recognise the need for that.
The noble Baroness, Lady Campbell, has an effective way of chiding politicians to remind us that we came in at the end of this process and that people had been engaged many years before we even woke up to the issue. I accept that, while the mantra of “nothing without us” carries through from the 1980s until today. The issue about ULOs challenging stigma is particularly pertinent. We all agree that ULOs need to be properly understood, resourced and supported.
There are issues about infrastructure funding and I turn now to the £3 million fund that has been announced recently. The noble Baroness referred to the Localism Bill and the opportunities it presents.
Lord McKenzie of Luton
My Lords, I was going on to localism but, before I do so, perhaps I may recap. I walked out to vote with the noble Lord, Lord Addington, and I think that what he was seeking for me to say earlier was not to report some success I had had with working with colleagues from dyslexia groups but to report the failure; that however much one had tried, it had not succeeded. So perhaps I can clarify that.
Before I get to localism perhaps I should refer to the contribution of the noble Lord, Lord Ramsbotham, which I found fascinating. I went to a seminar at the Centre for Mental Health earlier in the week. The seminar was about getting people into employment, although not necessarily through user-led organisations. It emphasised the key importance of having a mentor who stays with a person and how the one-to-one relationship makes an important difference. One can see the added benefit if that person comes from a user-led organisation as well.
My noble friend Lady Wilkins made the incredibly telling point that if you are not disabled you cannot understand the daily living reality of being disabled. That is why it is so important that we have user-led organisations. She expanded on some of the difficulties of getting funding and winning contracts. I have seen that locally in Luton in relation to a case where, although the process is not yet complete, small organisations have already missed out because they are competing against big organisations which are used, on a national basis, to getting the process right; they know exactly what is required and smaller organisations are therefore missing out.
This actually ties in with issues around localism because if localism is about empowering individuals, local communities and local groups to have a greater say over their lives, the rights in legislation have to be real for people and not just nominal rights. Some are fettered by quite a few powers held at the centre by the Secretary of State, but that is for another debate. People must be supported in being able to take up and make real use of those rights and funding should be attached to doing that.
Briefly, and to reiterate points other noble Lords have made, questions were put about the commitment that the previous Government made. The Improving the Life Chances of Disabled People report said that,
“by 2010 each locality (defined as an area covered by a council with social services responsibilities) should have a user-led organisation modelled on existing CILs [centres for independent living]. This recommendation has been taken forward as part of the cross-government Independent Living Strategy”.
I am right to ask the Minister whether that is still part of this Government’s approach to these matters—is that still a commitment they would wish to take forward? Putting People First talked about the transformation of adult social care and stated that,
“councils should have an enabling framework to ensure that people can exercise choice and control and have access to advocacy, peer support and brokerage systems with strong links to ULOs. Where ULOs do not exist, a strategy to foster, stimulate and develop ULOs locally should be developed”.
Is the noble Lord, Lord Freud, able to say anything further on that matter? Reference has been made to the £3 million-worth of funding that has been made available. I join others in supporting and congratulating the Government on doing that. But that funding is spread over four years and it has to cover things such as a new national head and somebody to be seconded to the Office for Disability Issues from a ULO, and the document talks about ambassadors and experts to provide skills and training support. It also refers to there being a facilitation fund for ULOs. Does all of that have to come out of the £3 million over that four-year period? Specifically, is that fund part of the £3 million? The press release that accompanied the announcement said that the facilitation fund would be,
“available for ULOs to bid for small to moderate amounts of money for specific projects”.
Might the noble Lord, Lord Freud, let us have his interpretation of what “small and moderate” might mean in these circumstances? I conclude on localism by referring to the community right to challenge. There is an opportunity there for ULOs but it must be a real opportunity. They must have the capacity to be able to do that, and perhaps the noble Lord might be able to say something further about that.
The Parliamentary Under-Secretary of State, Department for Work and Pensions (Lord Freud)
My Lords, I would like to thank the noble Baroness, Lady Wheeler, for the opportunity to discuss disabled people’s user-led organisations and the broader personalisation agenda. I would also like to thank those who have contributed to this short debate this afternoon. It is a crucial area of work and I know that for many noble Lords—many more than are here—it is an area of utmost importance. I also join in the tributes that have been paid to Nasa Begum.
Let me begin by agreeing with everyone who has spoken in support of disabled people’s user-led organisations and of their importance. I will use “the organisations” as shorthand, otherwise I shall use up much more time than I have available. These organisations have a unique insight and are a powerful voice for disabled people, and the Government recognise their important role in shaping future service provision. We want to secure their continued involvement by developing their skills and building on their experience. With the current need to reduce the deficit and rein in public spending, budgets everywhere are tight.
We know that many local authorities have decided to reduce grant funding for these organisations, leaving them to rely on other means of generating income, such as the supply of services. However, with a new emphasis on personalisation and localised delivery of services, there are opportunities for these organisations to develop alternative sources of income and continue to be involved on the ground in support of disabled people.
This Government have to spend wisely. We are not in a position to throw money at these organisations, and the investment we are making in cash and time must be targeted so that a little will go a long way. Working closely with these organisations, we have devised a package of support designed to get the most out of the money we have put in. I will outline the details of the package in a moment, but let me just put this approach into a wider context.
The work that organisations such as these have been doing—bringing people together, volunteering their expertise and influencing policy—is exactly the kind of thing that the Prime Minister means when he talks about the big society, a point made by the noble Baroness, Lady Campbell. For groups such as these, the big society is already a reality. We want to use the limited funding available to build on this good work and develop an even bigger society, acting professionally, delivering services and working alongside local and national government to deliver more for disabled people.
The advantages of working with organisations such as these are clear. They are the experts in their own disabilities; they are organised, knowledgeable and in many cases already provide support and services alongside those provided by the public sector. Often those services are more innovative, work better for their users and cost less to provide than the public sector alternative. Essentially, these organisations already know what works and they have clear ideas about what does not. The Government want to tap into that knowledge.
However, our experience of working with these organisations has also demonstrated that some groups are lacking the professional, business and leadership skills they need to drive their organisations forward and to weather the current economic climate. That is why we have devised a package, working closely with representative organisations, to deliver £3 million of support designed to build capability, communicate best practice and bring in voluntary expertise. In answer to the noble Lord, Lord McKenzie, the £3 million encompasses the full support package. It is doing what the noble Lord, Lord Addington, called for—making sure that we have a way of dragging in the expertise of these organisations to help disabled people.
The money will fund a national lead role shared by a civil servant and a disabled people’s representative, and link government and disabled people’s organisations at a high level. This will create a central, national focus for these organisations and cement their national presence. Beneath the national lead there will be a network of around 12 ambassadors, broadly spread out geographically. This will be complemented by a range of expert volunteers matched to organisations in their area that need their skills. All too often these organisations have told us that they lack the specific skills needed to run a successful organisation—skills ranging from accountancy and financial management to human resources support and business planning.
Finally, there will be a facilitation fund providing small grants for these organisations to address specific needs. This cash-limited fund will be managed by the national lead and a group of ambassadors, and be used to pay for things that support the sustainability of these organisations. Recruitment for these posts closed last week and we have received a great deal of interest, with around 10 applications for the lead role and 81 applications for the ambassador positions. The package will formally be launched next month, when we will announce who has been appointed. It will help these organisations to develop their skills and expertise.
Let me pick up on some of the points raised. The noble Baronesses, Lady Wheeler and Lady Wilkins, both asked how we will encourage local authorities to commission through these organisations. We are looking to the ambassadors to work with local authorities and to help local authority commissioners understand the added value that can be gained from working with these organisations. That support will allow the organisations to compete more effectively. We will emphasise through the ambassador network the added value that they can bring above and beyond what more commercial entities can offer.
The noble Baroness, Lady Campbell, asked what plans the Government had to crank up the delivery of the personalisation agenda. Our figures show that in September last year 248,000 people were receiving a personal budget. That is a good increase of 100,000 on the previous April, but it is still pretty patchy and we are determined to boost what is happening on that front.
In response to the noble Lord, Lord McKenzie, and the noble Baroness, Lady Wilkins, I can confirm that we want disabled people to have access to a good, strong organisation in their area. The noble Baroness, Lady Campbell, asked what local authorities might do to compensate for the extra costs. I shall write to the Minister at the department with that question.
The noble Lord, Lord Ramsbotham, made an interesting point about mental health. This is an enormous and very complicated area. I am extremely conscious that we have not got this right, particularly in prisons. We are talking to the MoJ. I take very seriously mental health issues in this area, but I find it very hard to find a coherent set of solutions. However, I am conscious that this is something that we need to get on with in the months and years to come. I take the noble Lord’s point.
I know that many noble Lords are champions of disabled people’s user-led organisations. I leave the Committee with the simple message that so are this Government. This is an area that we want to champion. We will continue to support and encourage those organisations’ involvement and help them develop into the professional operations that we know they can be.