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Disabled People’s Right to Control (Pilot Scheme) (England) Regulations 2010

Volume 722: debated on Monday 8 November 2010

Considered in Grand Committee

Moved By

That the Grand Committee do report to the House that it has considered the Disabled People’s Right to Control (Pilot Scheme) (England) Regulations 2010.

Relevant document: 3rd Report from the Joint Committee on Statutory Instruments.

My Lords, I can confirm that, in my view, the statutory instrument is compatible with the European Convention on Human Rights. I am very pleased to take part in today’s debate and commend these regulations on right to control. This is a groundbreaking advance, which for the first time gives disabled people a legal entitlement to choice and control over the public services they receive.

When noble Lords debated the Welfare Reform Bill in this House last October, I noted just how important choice and control are to all our lives. There is an emerging thesis that happiness, quality of life and fulfilment depend on our ability to contribute on our own terms and be valued for that contribution. Like anyone else, disabled people need to be empowered to be in control of their own lives. They should have the same opportunity to be involved in a society that recognises them as individuals who contribute, rather than as people defined by disability. So I am proud that, with right to control, we have developed a policy that commands such broad support.

I am happy to congratulate the noble Lord, Lord McKenzie, for the work that he and his colleagues have done to bring the policy to this stage. I also pay tribute to the many people who have been involved in laying the groundwork for these regulations. A great number of organisations and individuals have expended a huge amount of time and energy in shaping this legislation. However, it would be remiss of me not to reserve a particular mention for the noble Baroness, Lady Campbell of Surbiton, who has been such a potent advocate for right to control. Her work, and that of the advisory group she chairs, has been critical in shaping this policy and advising the Office for Disability Issues. Even then, we could not have come so far without the support and co-operation of the many disabled people and user groups who have been crucial in ensuring that we get this right. This sum of knowledge and expertise is reflected in the clear insights and attention to detail that we see in the regulations under debate.

Right to control represents an important landmark but it is one stage in a longer journey. The coalition Government have a broad vision to decentralise, empower individuals and cut bureaucracy. Right to control fits well with our plans to allow local authorities, communities and individuals to manage their own destinies with less interference from the centre. By shifting the focus from what people need—or what somebody thinks they need—to what they want, we are working towards, first, services that meet the aspirations of disabled people, as well as their needs; secondly, services that are planned and designed around the disabled person; and, thirdly, a diversity of services that help disabled people choose the right package for them. In short, these are personalised and responsive services.

The right to a personal budget and, ultimately, the right to take the cash and buy services directly is the mechanism for empowering disabled people. Too many people are currently offered services that are designed for the convenience of the provider, not the customer. Too many people still find that their own complex needs are not fully understood and catered for, despite the best efforts of the local social care department. Right to control will put the people who are the experts in their own care firmly in the driving seat when it comes to putting together a package of support. I fully recognise that some disabled people will still need support and advocacy to discover what is available and what they can aspire to. But I want to be clear that right to control is designed for all disabled adults and our trailblazers will deliver the guidance and support needed to ensure that everyone can exercise that right.

Right to control represents a transformational moment for disabled people. It supports Article 19 of the UN Convention on the Rights of Persons with Disabilities—the right for disabled people to live independently and be included in the community. As such, the trailblazers represent an important catalyst for change; they will act as a spur for culture change within public bodies, putting the emphasis on the disabled person and responding to their needs and aspirations. They will drive culture change among providers, ensuring that services are designed for the convenience of the customer, not the convenience of the provider, and inspiring change for disabled people and their families as they see what can be achieved and decide how to further their own progress. As a result, disabled people will finally own the choices about practical issues such as who helps with personal support, how they get supported into employment and who adapts their homes.

The trailblazers are aimed at delivering a seamless customer experience. The programme should also help us to see what works and what does not, as we strive towards more streamlined and interconnected systems. We have a real opportunity here to strengthen the link between local authorities, Jobcentre Plus, service providers and third-party organisations, especially user-led organisations. If we can capture the lessons effectively, we will go a long way towards finding the best delivery channels matched with the best advice and advocacy.

I hope that as we work towards a full evaluation in two years’ time, the trailblazers will help us find the best way to optimise a comprehensive right to control package. I therefore seek approval for these regulations and commend them to the Committee.

My Lords, I also really welcome the regulations. I, too, pay tribute to the noble Lord, Lord McKenzie, for introducing them; it was a very inspirational thing to do. It was risky and I think it will pay great dividends in the future. How nice that all sides of the Committee can support this initiative.

The right to control is, as the Minister said, a significant landmark for disabled people. For decades, disabled people have campaigned for the right to have choice and control over our lives. A small thing, you may say, but it is something that we have not been able to take for granted in the way that non-disabled people have. Now we have equality.

The regulations take us a long way towards the goal of choice and control. If implemented well—and they do need to be implemented well—they have the potential to transform the way we live. By exercising the right to control, disabled people will inevitably become more confident in taking personal responsibility for their role in the community and family life. It will enable greater freedom to plan and pursue educational, work or volunteering opportunities. In short, disabled people have at last been put in the driving seat of their own destiny. What is more, this is a legal right, enshrined in legislation—not a gift or a charitable favour, for which one must be grateful, but a right. This is a real step forward for disabled people.

As the Minister said, one of the key articles in the UN convention on the rights of disabled people is Article 19. It concerns the right of disabled people to live independently and be included in the community. As noble Lords will be aware, the UN convention states clearly that disabled people should have and enjoy the same human rights as everyone else. It sets out obligations on states to ensure that those rights are met. The right to control goes straight to the heart of Article 19 and provides a vehicle to realise this right and, consequently, goes a long way towards implementing the convention. That is terrific.

In addition, the way in which the right to control legislation has been conceived and developed accords well with the UN convention duty on states to involve disabled people in the planning and implementation of such rights. Both the previous Government and now the coalition Government have involved disabled people at every stage of developing the right to control legislation and now its implementation. I should know because I am the chair of the advisory group of disabled people and experts in independent living who helped to shape the legislation, proposals for the trailblazers and the evaluation. Everything about us was discussed with us during this process. The seven trailblazers are following the same model of co-production at a local level. This will ensure that the experience and knowledge of disabled people permeates how the right to control continues to be delivered and developed.

The way in which we have developed the right to control over the past two years, as an advisory group and on the ground with our buddies, has taken the personalisation agenda a step further and set a new dynamic support service culture whereby disabled people, who once had to apply to five or six different agencies for support, will now engage with one support planning process. This is something for which disabled people have been asking for a long time. A new public support service where disabled people will, again by legislative right, decide for themselves how best to use their resource allocation is at the heart of this process. We will be able to devise creative solutions of our own for our own support, and exercise as much control in the commissioning of the outcome as we feel able. If you do not feel that you can control everything, you do not have to; you can have a plurality approach.

I know that some noble Lords have concerns that some disabled people may not be able to take that kind of control over their lives in this way. However, I can reassure them that on the advisory group we looked at this issue and made sure that the right permits flexibility and will be well supported throughout the process. Flexibility, of course, is the key. Disabled people can ask for a particular service to be provided or take a mix of existing services and a direct payment, or, in my case, use a direct payment to purchase all their support themselves and be totally 100 per cent in control. However, I know that most disabled people are not control freaks like me.

There will be support and advice for those who want their payments to be managed by a third party, and advice, training and guidance for people who want to employ personal assistants. Advocacy and support will be an integral part of the right to control. I am particularly keen to see how well the trailblazers fulfil this important part of the right-to-control culture and keen that we scrutinise it as it develops.

Peer support is incredibly powerful in demonstrating to disabled people what can be achieved. It is another important part of trailblazer activity. Before I began employing my personal assistants more than 20 years ago, I needed to observe how other disabled people managed their employees and I learnt from their mistakes—as I am sure others have learnt from mine.

We all have dreams or expectations from life; disabled people are no different. Delivered successfully, a right to control will change for ever the way in which the state responds to our needs. I am confident that, by transferring power from the state to the individual in this way, we will overturn decades of low expectation and witness a transformation in people’s capability and well-being.

However, I recognise that this is an ambitious project. We are overturning a culture of dependency and philanthropy. There will be teething problems as we bed it down. However, I have been extremely pleased to be part of this transformative exercise. I have seen how people have grown, even during the two years in which I have had the privilege of chairing the advisory group. I am looking forward to seeing the success of the trailblazers and their eventual rollout across the country.

My Lords, as my noble friend said, it is just over a year ago that the band of Peers who speak on DWP matters welcomed the amendments to the Welfare Reform Bill, now Act, of 2009 which have triggered these regulations for pilots. I, too, can give them a hearty welcome.

I said a year ago that the amendments, now regulations, would herald a real shift in power from the state to disabled people, ensuring that they are in the driving seat when it comes to the support they need. I seek a few clarifications and have a few questions.

The amendments, which inserted a new clause, included a power for the Secretary of State to issue directions under existing community care legislation to deliver alignment under existing enactments. The then Minister, the noble Lord, Lord McKenzie of Luton, to whom I also pay warm tribute, said:

“Alignment means delivering the effect of the right to control to individuals in receipt of adult community care services”.—[Official Report, 27/10/09; col. 1114.]

My noble friend Lord Freud responded that it made far more sense to base the right-to-control approach on community care services, which are likely to be required on a sustained and long-term basis, than on the more transitory requirements surrounding support for disabled people to secure employment.

I should be grateful for clarification on that point. I think it means that adult community care is not included in these regulations because it comes under other legislation on direct payments, but that under these regulations authorities are enabled to share information about community care. Is this correct? Presumably this means that assessments will be shared so that disabled people do not have to undergo multiple assessments.

We all know how stretched local authorities’ financial resources will be. Will any support be provided to authorities to enable them to develop and implement a single assessment system? Will there be any practical support for organisations that provide information, advice, peer support and advocacy? There is an obligation for authorities to give to the disabled person information about organisations that provide advice and assistance, but there is no duty to sustain those organisations, nor is there a right to advocacy. Perhaps my noble friend can say what support there will be for the pilots.

Having read the document helpfully provided by the Office for Disability Issues, Making Choice and Control a Reality for Disabled People, I end by asking my noble friend one or two questions arising from that document. On page 20, I see that the Office for Disability Issues is working with the Department of Health to consider allowing, within the trailblazers only, third parties to carry out non-complex assessment reviews. Are we talking about people other than healthcare professionals? I was not sure. If we are, there is already a certain amount of controversy about those who carry out the work capability assessment, and it is important to get all these assessments right.

Another small point is the rule that a disabled person has to be informed in writing of various things. We are told that this means,

“in a format that is accessible to the person”.

If that is what the regulation means, why does it not say so?

Finally, have we got anywhere with the idea that the excellent access to work provisions might be guaranteed to a disabled person before the offer of a job, so that a potential employer would be more encouraged to offer that person employment? I hope that my noble friend can answer those questions—perhaps in writing, if not today. However, in general, I welcome the regulations most warmly.

My Lords, I thank the noble Lord, Lord Freud, for his full explanation of these regulations and for his kind words. We certainly welcome the introduction of the right-to-control trailblazers, which, as all noble Lords who have spoken identified, flow from the Welfare Reform Act 2009. The Minister referred to them as groundbreaking; the noble Baroness, Lady Campbell, referred to them as transformational and overturning a culture of dependency. I very much agree with that. The noble Baroness was the driving force behind the development of the right to control. She described the legislative process as one of co-production. It would seem that this approach has very much continued in the development of the regulations before us. The right to control is predicated on the principle that disabled people are the experts in their own lives: and that their being passive recipients of whatever support is deemed appropriate, and how that support is delivered, is no longer acceptable. I agree.

I have one or two specific questions that perhaps the Minister can help me with. The Independent Living Fund is not one of the qualifying services, although it is one of the six funded services that are to be included in the right-to-control trailblazer areas. Notwithstanding that further applications are to be considered during the current financial year, my understanding is that the right to control can still apply to existing recipients. I should be grateful if the Minister could confirm that. Can he also explain the position for future years? What are the planned allocations over the CSR period? If he cannot tell us today, he might let us know when that information will be available.

Work Choice is one of the qualifying services. According to the DWP website, contracts have now been awarded for the delivery of that programme. Can the Minister say a little about how those contractual arrangements sit alongside the right to control? For example, will the duty of the responsible authority to provide information to the beneficiary under Regulation 7 remain with the Secretary of State or, by agreement, be passed to the third-party provider? In second arrangements with providers, what estimate has been made of the likely numbers of people who will opt for arrangements other than those available under these contracts? More generally, can the Minister say whether any of the six funding streams are likely to be inculcated in whole or in part into the universal credit when introduced, or if any of the relevant services within the meaning of Section 39 of the Welfare Reform Act would be so included? I understand that we may get more detailed views on that later in the week.

It is understood that the Work Choice programme, when introduced, will focus very much on an individualised approach to supporting people towards and into work. That is something that we should support. Can the Minister say something about the relationship between that programme and the right to control? As the noble Baroness, Lady Thomas, said, concern was expressed during our deliberations on the Welfare Reform Bill that expressly excluding adult community care services from the legislation would substantially diminish benefits from the right-to-control approach. The reason for the exclusion was that similar provisions exist under other legislation. We are told that the Department of Health will issue directions to local authorities to ensure that people assessed for adult community care services living in the pilot areas will have the equivalent facilities of the right to control. Given that the regulations have now been laid and that the pilots are due to commence shortly, have those directions now been finalised?

Supporting People is a vital, non-statutory programme that helps about a million of our most vulnerable citizens each year. It is a sign of the times that it is considered a reasonably protected budget, although it suffers a 12 per cent real-time reduction over the CSR period. It is a qualifying service for the purposes of these regulations, to the extent that it helps disabled people to live independently. Funding from the centre is no longer ring-fenced and there is great concern that local authorities, under extreme financial pressure because of budget cuts, will shift resources to other programmes. To the extent to which that happens, vulnerable people who are eligible to benefit from these and other regulations will suffer. Will the Minister say how this issue is to be monitored?

It is comforting that the DFG regime has been brought within the right-to-control pilots. Again, the budget will be under extreme pressure because local authorities typically top up their central capital allocation. Obviously, their scope for doing so is diminished. Will the Minister deal with one point? It is focused on the changes to buildings, but it should cover the provision of equipment as well. Do the processes envisaged here facilitate the recycling of equipment? I recall instances in the past such as when I was on a local authority and someone had a stairlift fitted. Sadly, within two weeks, they died, but it was pretty much impossible to get the stairlift taken out of that property and installed in another property with an equivalent need. I am not sure that I have my mind around all the processes envisaged here, so I should like to check whether that is facilitated, or not precluded. Obviously, that would damage the interests of disabled people.

Finally, could the Minister remind us of the basis on which the pilot areas were chosen?

In conclusion, these regulations are a hugely important step forward and a tribute to a lot of work that has been done by many people, particularly the noble Baroness, Lady Campbell. They give us a chance to test the proposals in practice and open up opportunities for disabled people to transform the quality of their lives. We give these regulations our full support.

My Lords, I thank everyone who has spoken in this debate for their unanimous supportive approach. We are looking at a watershed moment—despite the level of consensus in this Committee, or maybe even because of it—in the way that right to control will enable disabled adults to have a real say in how services are provided and choose how to purchase those services. As the noble Baroness, Lady Campbell—who will, I think, be watching—said, these pilots need to be implemented well. While I could not possibly comment on her claim that she is a control freak, I know she raised the issue that some people who may not be quite as enthusiastic about taking total control will still be part of the pilot. Full support for them will be built into the pilot and will be a vital aspect of it.

I will now deal in no particular order with the questions that were raised. The noble Baroness, Lady Thomas, asked about the number of assessments required. We are working with all the local authorities involved to support them in undertaking just a single assessment, and have a field support team working with the different local authorities to share the approach. The noble Baroness asked why the regulations do not refer to accessible formats for the provision of information. These do not need to be specified in the regulations because there is a general duty under the Equality Act. The noble Baroness asked how community care will work. It is aligned with right to control. These regulations work alongside the legislative framework for community care. Indeed, the data-sharing regulations extend to community care.

The noble Baroness asked about the support provided to user-led organisations during the pilots. Trailblazers work with the local organisations that supply the support and advocacy. The representatives are members of local project boards, and the Government will provide support to trailblazers, which can include support for user-led organisations. The noble Baroness raised the issue of general support. The concept of right to control involves assembling the money that is already there and making it accessible in a right-to-control way. For the purpose of the pilots, we are putting resources in because there is clearly extra cost for the communities. From memory, the figure that we are adding to that package is £7.5 million, which will be a mixture of cash and practical support.

On the question of whether third-party organisations will be able to view personal data, these regulations do not extend to the sharing of data with the partner organisations, because they are not defined as relevant authorities. In cases where it is necessary to do so, the disabled person or their representative will need to give their consent to the data being shared.

I think that I can now move on to the series of penetrating questions asked by the noble Lord, Lord McKenzie. His first ones concerned whether people receiving adult community care would have the full right to control. The answer is an unequivocal yes.

I am afraid that I shall have to clarify in writing the noble Lord’s question about adaptations. I was not aware of that particular wrinkle about not being able to recycle, and it would be nice to lose that anomaly if possible.

With regard to the relationship with Work Choice, customers eligible for that programme in a trailblazer area will automatically be eligible for the right to control. The Independent Living Fund will remain one of the funding streams for the right to control, and clearly we will work with the trailblazers and the Independent Living Fund to look at the impact for the future. I do not think that I am in a position today to be more explicit than we have been about the rest of the spending review in that regard. We are looking at the matter in the context of the spending review, and clearly we are working with the trustees of the fund, disabled people’s organisations and other key stakeholders, including local authorities. I can commit to a full consultation with disabled people’s organisations, the key stakeholders and local authorities before any decisions are made.

I think that the only issue that I have not dealt with is the basis on which the pilot areas are chosen. I believe that the noble Lord who asked that question knows the exact answer, which I have to admit I do not. I shall write to him on what he thought was the best way of choosing the areas, although I suspect that that is not entirely necessary. In the nick of time, perhaps I can modify that answer, thanks to the extraordinary writing skills of the team behind me. We issued a prospectus setting out the aims of the trailblazers and invited bids. The selection panel considered the bids, and choices were made ensuring that the right to control could be tested in rural, urban, unitary and metropolitan authorities, so there was a good mix. As the noble Lord will know, we lost one of the pilot areas but we are pursuing it with the other seven.

With those questions all dealt with, I conclude by saying that these regulations are a necessary step in enabling the legislation to deliver the right to control and therefore in empowering disabled adults to have greater choice and control over their own lives. I commend the regulations to the Committee.

Motion agreed.