Uncorrected Transcript of Oral Evidence
To be published as HC 1074-i

House of Lords

House of Commons

ORAL Evidence

Taken Before

the Joint Committee on Human Rights

The implementation of the right of disabled people to Independent Living

Tuesday 24 May 2011

Sue Bott, Neil Coyle, Marije Davidson, Jaspal Dhani and Julie Newman

Jim Elder-Woodward, Pam Duncan, Rhian Davies and Paul Swann

Evidence heard in Public Questions 1 - 37

USE OF THE TRANSCRIPT

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Members Present

Dr Hywel Francis (Chairman)

Lord Bowness

Baroness Campbell of Surbiton

Mike Crockart

Rehman Chishti

Lord Dubs

Lord Lester of Herne Hill

Lord Morris of Handsworth

Virendra Sharma

Baroness Stowell of Beeston

________________

Examination of Witnesses

Sue Bott, [National Centre for Independent Living] Neil Coyle, [Disability Alliance] Marije Davidson, [RADAR] Jaspal Dhani [UK Disabled People’s Council] and Julie Newman [UK Disabled People’s Council].

Q1 The Chairman: Order, order. Good afternoon and welcome to the Joint Committee on Human Rights on this very first session of our inquiry into independent living. I am very grateful to you all for coming along today. For the record, please introduce yourselves.

Marije Davidson: My name is Marije Davidson from RADAR.

Neil Coyle: Neil Coyle, from Disability Rights.

Sue Bott: Sue Bott, from the National Centre for Independent Living.

Jaspal Dhani: Jaspal Dhani, from the United Kingdom Disabled People’s Council.

Julie Newman: Julie Newman, from the United Kingdom Disabled People’s Council.

Q2 The Chairman: Thank you. Could I make two points at the beginning? First, if you feel that we have not covered all the ground that we wish to-that is quite likely today-I will be asking you at the end that if you wish to submit any additional evidence, we would be delighted to receive it. Secondly, as a Committee, we will be visiting the various groups during the course of our inquiry and will be inviting individual groups to come in to meet us somewhere in London on an informal basis as well.

I want to begin by asking a very straightforward question. We all begin by assuming that you all support independent living as a basis of government policy. Are each of you happy that the present Government share your understanding of what independent living means for disabled people?

Sue Bott: We have moved on a considerable way over the years in government understanding of independent living. We are happy with the progress that has been made, but where we have concerns is on making the understanding of independent living a reality across all government departments. Our feeling is that there is a substantial amount of understanding but perhaps there could be more joined-up thinking on independent living that encompasses the whole of a person’s life, rather than just part of it. We feel that where the Government are at the moment is that independent living is often considered to be a matter for one particular department or another, whereas we contend that independent living should concern the whole of Government.

Neil Coyle: Sue has put it very neatly. There is an acceptance of the definition but the problem is in implementation and making sure that the definition is mainstreamed across central government departments in particular.

Q3 Mr Sharma: You welcome the emphasis in the current policy on placing more purchasing power in the hands of disabled people but are concerned that there are other impediments within the wider system that are getting in the way of a more demand-led cost-effective system. Can you explain what this improved system would look like and what the impediments are that stand in its way? What can be done to remove them?

Sue Bott: What we see as the impediments to full involvement are, first, that not all the access considerations are always taken into account. Sometimes there can be an assumption that disabled people will pick up information in ways that the rest of the population is expected to-increasingly regarding the use of the internet, for example. This is not just a problem where disabled people are concerned but it has a particular impact on them. Not all the access needs are met. We cannot all use the internet, either because our impairments do not allow us to access it or because we know that disabled people are not as economically advantaged as other sections of the population. In that way, we feel that disabled people often miss out and are unable to respond to things like government consultations.

Jaspal Dhani: I should like to add to that in terms of the vision, and identifying and overcoming obstacles, as per Article 4 of the UN Convention on the Rights of People with Disabilities. Paragraph 3 in particular speaks very much about consultation and engagement of disabled people. We believe that in developing services that support the needs of disabled people at an individual level and at a community level, consultation and engagement are key to the future success of any policy. We certainly see that as part of the vision, going forward.

Marije Davidson: At the moment, there is a barrier, and the disability policy makes it very clear to people that that duty still exists under the public sector equality duty. That has recently been confirmed in the Birmingham judgment about social care cuts. The judge made it very clear that it is important actively to go out to disabled people and other people, give clear information about what the proposals are and listen to disabled people. Unfortunately, we still find that quite a lot of decisions are made without talking to disabled people, and that leads to bad decision-making. A lot of cost in the system is caused simply by not talking to disabled people and user-led organisations, and that is a major impediment.

The Chairman: If colleagues wish a particular organisation to address particular questions, please indicate that.

Q4 Baroness Campbell of Surbiton: I want to come back on the duty to involve. I believe that the duty has recently been diluted somewhat. How well has a duty to involve worked over the past two or three years? What worries do you have about that change? Have there been any indications of sliding backwards on that duty in terms of evidence?

Marije Davidson: There has certainly been progress. This week there was a report looking at the progress that has been made on the equality duty. There certainly has been involvement for disabled people and disability groups at an early enough date, before decisions are made. We have heard that there has been sliding back in recent months and, maybe ironically, it is on the equality duty. In January, the Government published proposals for specific duties which set out that public authorities should meet the general equality duty. That was after a long consultation. It was a good consultation, and we were quite happy with the outcome. Then in March, they suddenly announced the policy and reduced the proposals quite drastically. Basically, our duty is to report on what the public authority has done in the past rather than on what it is going to do in the future. We are quite concerned that, if that is the way to involve disabled people, public authorities listen to us. I am really concerned that slipping back is happening.

Neil Coyle: It seems clear to us that the involvement of disabled people has never been successfully delivered, particularly at local level. The Birmingham case just last week probably emphasises that because, had disabled people been involved and engaged and so on in what councils were proposing to do with care services, it would have been immediately apparent that there was a threat to equality of opportunity. The problem now is that, rather than looking to confirm the need for the duty and enforce it, organisations such as the Equality and Human Rights Commission and the Care Quality Commission are seeing their roles or responsibilities reduced, and the Equality Act seems to be seen as a bureaucratic burden rather than as being integral to delivering services in support of disabled people.

Q5 Lord Dubs: My two questions are essentially to the DRP, I believe. You have told us that there is a gap between policy aspirations in the UK and the everyday experiences of disabled people. Can you give us some concrete examples of how you think national policy commitments on independent living do not filter through to disabled people’s everyday experiences?

Marije Davidson: You could look, for instance, at the current Government’s commitment to give £2 billion extra to social care support through the local authority. If people then find that a lot of social care is being cut in, for instance, Birmingham, that is one practical example. The previous Government’s commitment to have user-led organisations in every locality by 2010-last year-has not been realised. Now we hear about user-led organisations closing in the country. Those are two very concrete examples.

Jaspal Dhani: I should like to add that the Government’s decision to cut the Independent Living Fund in the future will, we feel, have some brutal consequences for many disabled people who rely on direct payment support and who therefore need access to the additional money afforded through the Independent Living Fund. The brutal outcome is that many disabled people will lose the level of support that they need to remain independent in the community, thereby putting their health and well-being at further risk. Likewise, we feel that the planned changes to the disability living allowance, particularly the care component for individuals residing in care homes, will also have a negative impact on people’s independence, as it is likely to leave such individuals isolated within their care homes and dependent on organised activity. It is taking away the freedom and mobility that non-disabled people enjoy as and when they wish, whereas individuals in care homes will be returning to a life of isolation.

Lord Lester of Herne Hill: I think that Mr Coyle said that the powers and duties of the Equality and Human Rights Commission were being weakened, as were the commitments under the Equality Act. Would it be possible to write to us with chapter and verse explaining exactly what is meant on both those important points?

Q6 Lord Dubs: This question is also primarily for the Disability Rights Partnership. In your written evidence, you talk about a need for a new robust policy framework. How would the current independent living strategy need to be changed to provide for such a framework?

Sue Bott: The first thing to say would be that in discussions that we have had with the Minister responsible for the independent living strategy, as we understand it, there has been no decision yet on how the strategy should be moved forward, if indeed it should. We suggest that a way forward is to take a look at the independent living strategy, which was a five-year strategy and has not yet been completed, and look at how it can be completed. For example, some of the outstanding work of the strategy is looking at the economic position of disabled people. As we understand it, when the strategy was launched in March 2008 it commanded all-party support. We know that, of course, the Government have been exercised by many things since the general election, understandably, but we would hope that the independent living strategy could be looked at and completed as a cross-departmental piece of work. That would be extremely helpful in raising the issues of independent living across Government, which we sense have been forgotten about in all the business that needs to take place. We would like to see more focus on them.

Q7 Baroness Stowell of Beeston: Hello. My name is Tina Stowell. I have two questions. The first is aimed at the UK Disabled People’s Council. In your submission, you said that the impact of the Government’s proposals to reform the benefit system, together with cuts to funding, will lead to a breach of Article 19 of the UN Convention. Can you explain your conclusion, and is there a particular proposal which you think will violate the convention?

Jaspal Dhani: We feel that the reduction in support provided to individuals and organisations will lead to the non-fulfilment of Article 19, as my colleagues have already highlighted. The impact of the removal of funding is leading to a reduction in services, in the autonomy that individuals can exercise over their lives, and in their representation. Article 19 talks specifically about opportunities for people to choose where they live and how they live and, in particular, how they enjoy their day-to-day life. If we take the issue of capping housing benefit as an example, it will lead to disabled people not being able to afford their current accommodation and therefore not being able to exercise their choice of living where they want to live, which can also impact on the ability to keep their jobs, because it can be impossible or difficult to travel from one location to another, particularly if their support services are not there. Given the state of inaccessible transport that many disabled people have to face, that leads to a greater level of isolation.

When we talk about independent living, and look at the level of support afforded to people who have been assessed by social services as needing care in the home, those services are also being reduced. The removal of the independent living fund, for example, creates an extra burden on disabled people and on the budgets at local authority level. Local authorities are already starting to reassess, in many cases, individuals who are already in receipt of direct payments and have started to move the qualifying criteria. Some local authorities will fund only those individuals who are deemed to have critical support needs, which means that others who are outside that assessment may lose out on the support that they would otherwise have obtained.

We feel that when we look at those issues in a holistic manner, it potentially contravenes Article 19.

Neil Coyle: I would like to add a few more concrete examples of what is happening right now and what the government proposals would mean. We have the work capability assessment being used to move people off incapacity benefits. The test is so poorly implemented that 40% of the people who appeal are successful in overturning the assessment decision.

Q8 Baroness Stowell of Beeston: Is that 40% of disabled people or 40% of all people?

Neil Coyle: If they are people who are moving from being determined as fully fit to work into an employment support allowance category, it is likely that they would meet the DDA definition of disability. Anyone able to access employment support allowance, because of the points system that is allocated in order to get into it, would meet the legal definition. So these are disabled people who are being found fully fit for work and having benefits and support reduced-the support to find and get to work. There is one example.

Another concrete example is the proposed time-limiting of contributory ESA to one year for those in the work-related activity group, which will see 400,000 people with health conditions and significant impairments losing support after one year, despite the evidence suggesting that only 13% of disabled people were able to find work within a year under Pathways to Work.

There is a risk that the new assessment for the personal independence payment, which is replacing DLA, will generate a perverse incentive for disabled people not to use aids and adaptation. If you are not using aids and adaptation in order to secure a small amount more financial help, it is unlikely that you will be able to live independently and be included in the community, so arguably there is a case there as well. We have already had mention of the loss of mobility support for disabled people in care homes. Losing mobility support to get out into the community to do anything-visit family, go shopping, even attend a GP-is a likely outcome of cutting 78,000 people from that particular bit of support.

There is also a more general point around the government narrative for this, about tackling a lifestyle choice. Many of us would not accept that anyway, but it acts as a disincentive to employers to take on disabled people who are being shifted within the benefits system and, arguably, increases the stigma and discrimination that disabled people experience in daily life. It is quite worrying that Scope’s ComRes study suggested that 37% of disabled people believe that the attitudes towards them have got worse in the past year.

Q9 Baroness Stowell of Beeston: I was going to direct my next question towards the Disability Rights Partnership representatives. I think that you have kind of answered it, but let me just tell you what it is, and if you want you can give me a brief response, because I am conscious that we have lots to get through. You all agree that it is important to take a holistic approach to decision-making on policies that affect disabled people’s lives and to assess the cumulative impact of policy changes. Can you give us a concrete example of the cumulative impact of recent policy changes? I think that you have kind of covered that, but you may want to say something briefly to encapsulate what you have covered.

Sue Bott: I liken support for disabled people to a house of cards. If you remove one card, a whole lot of cards collapse. A good example of that is the decision to close the Independent Living Fund. Nothing has come in to fill that gap. We presented evidence to you of specific cases. I am thinking of a particular case that we highlighted of a lady in Nottingham who, by the time she had got her social care package, found that she could not complete the process. She was going to put in an application to the ILF, but she found that it had closed. Unfortunately, her local authority is not in a position to make up the funding that she would have got, had she been able to apply to the ILF.

The result is that yes, the local authorities are still contributing the amount of support that they originally agreed but because the ILF part of the support is missing and the local authority cannot meet that support itself, her life is very restricted. All she can do is just about maintain herself in her own home. She certainly cannot think about getting out of her own home and doing anything in the community.

That bears out what I was saying earlier, that there needs to be joined-up thinking across Government. When one government department makes a decision to take some action on one of its responsibilities, in this case the DWP on the ILF, there is an impact across Government as far as disabled people are concerned. I remember that when this subject was first introduced to us by DWP civil servants, they said, "Independent living is not really our responsibility; it’s the Department of Health’s". I said, "No, actually, independent living goes across Government". This is a classic example of where things go wrong. Once one of those cards is pulled away, life for a disabled individual can deteriorate very rapidly. I am sorry, that was not a quick response but I hope that I explained where we are trying to come from.

Neil Coyle: If I can chip in as well, the Home Secretary's letter to the Chancellor of the Exchequer outlining the fact that disabled people would be disproportionately affected, by the Budget decisions in particular, exemplifies the point. But Demos has estimated that there will be £9 billion lost in income by disabled people within this Parliament. That comes partly from 400,000 people losing employment support allowance. It could potentially come from up to 652,000 working-age people who are currently receiving low-rate care DLA, when that bit will not be replaced in the personal independence payment. We have already talked about the 78,000 care home residents and touched on the social care charges and changes to eligibility points as well, with some disabled people in Lincolnshire experiencing 98% increases in weekly charges. In Derby City it is something like 78% in its hourly rate charges. Those are direct results of councils making changes from government policy.

More generally, I believe the NCVO are logging organisations affected by cuts as well. Of the 500, I think that more than 50% are involved specifically with disabled people, adult social care, mental health and other volunteering responsibilities which would support disabled people normally. The cumulative effect is massive for thousands of disabled people and their families.

Marije Davidson: There is a certain tendency to keep support for those who are most in need of it-those who are very disabled. We like at present to talk about the most vulnerable and the people most in need of support. There is a risk that there is a gap between people who do not need support and people who need loads of support. In between there are many people who need some degree of support, but no one is supporting them. We are talking about the right to independent living. This is a clear infringement of the right to independent living. However, the right to independent living is a very positive duty. It is about enabling people to participate in society, to have social interaction and to work. I am concerned that by focusing just on people most in need, we are starting to talk about the right to life of people who will die without support. We are talking about the right to be free from being subjected to inhumane and degrading treatment. I am worried that there is this narrowing of focus on civil rights, whereas the right to independent living is much more positive. It is about enabling people to go out and about and contribute to society.

Q10 Lord Lester of Herne Hill: I am not an expert in any of this. I am in no position to evaluate the social facts that have been presented to us. However, it would be helpful to know whether the witnesses agree with the stated aims of the Government so far as their independent living strategy is concerned-the aims for their five-year programme.

Is the argument about those aims or about whether they are being properly implemented? Or is the quarrel not with implementation but with the stated aims themselves? That is, all disabled people ought to have the same choice, control and freedom as everyone else; support is to be based on their own choices and aspirations; and the outcomes are to be measured under the three main categories. Is the quarrel with those aims or with the implementation of those aims?

Sue Bott: The aims are fully supported by our organisations. Indeed, the independent living strategy itself was launched at the offices of NCIL and we very much endorse those aims. As I have said, we believe that the aims are supported across the political spectrum, so our concern, as you rightly say, is about their implementation and the fact that, as far as we are aware, the independent living strategy is currently lying in someone’s in-tray waiting for a decision about whether it will be picked up and further work done on it.

Q11 Rehman Chishti: The question I want to ask has already been alluded to by Mr Dhani. Concerns have been raised by all about the changes that have been made to the independent living fund grant. That being the case, where is the evidence to support your concerns about the effect that will have on independent living?

Sue Bott: Can you clarify a point? Are you talking about the independent living fund rather than disability living allowance?

Rehman Chishti: Perhaps I can make it clear. This is not about one specific example, but about the wider evidence. It is not about one specific issue, but the overall evidence from different corners of society which is saying, "This is the impact it will have".

Sue Bott: We have to recognise that the fund was closed in October, so it is rather early days in terms of being able to assess the impact. Nevertheless, I have presented to the Committee two cases involving the independent living fund where disabled people who would previously have received funding are now facing a funding shortfall. That has an impact on their lives. We were given to believe last summer that there would be a period of consultation on the independent living fund, so we were quite surprised when the decision to close the fund was announced.

I would just reiterate that when these decisions are made, their full impact needs to be taken into account. It seems to us that the fund was closed on the assumption that local authorities would make up the shortfall caused by its closure. If we listen to the reaction of bodies like the Association of Directors of Adult Social Services, we hear them say, "We simply have not got the money to make up the shortfall". This is a problem that will grow and grow. At the moment, it is a problem for people who would have applied to the fund previously and now cannot do so, but in the future, when the fund comes to its full conclusion, it will be a problem not only for all those people who have accumulated up to 2015 and who would have applied to the fund, but also for the 21,000 existing recipients. That is because to date there has been no suggestion about where that money can come from.

Q12 Rehman Chishti: Can I clarify one thing? You said 21,000, and you said you had the example of two who would be affected by the changes. Am I right in thinking-correct me if I am wrong-that out of 21,000 people who are claimants, that is the figure at which the Government stop? You have only two examples.

Sue Bott: I think that there is a misunderstanding here. I have presented two examples to you. I could present a number of other examples to you and I would be happy to do so, but I am mindful of how much reading matter you have. But the point is that those two are examples of people who have been affected by the closure of the fund since October last year, so they are people who would have been able to apply for the fund had it continued. It is closed to new applicants; that is probably where we are getting confused. A decision has been taken that the fund will close in its entirety, and it is at that point that the 21,000 people who currently rely on that fund will find that they do not have that funding any longer, and to date we have no clear indication of where that funding will be made up from.

Q13 Lord Morris of Handsworth: I also want to explore a deeper understanding about some of the concerns that have been expressed by different groups. In this instance, it is the United Kingdom's Disabled People's Council, which recently organised a very high-profile march, focusing on the impact of cuts and changes to the benefit system for disabled people in the Welfare Reform Bill. Is there a particular provision in that Bill which you think will impede independent living in a way that breaches the UN Convention, or is your main concern the aim to reduce the budget for disability allowance by 20%?

Julie Newman: One of our major concerns is that it has already been recognised by the Government that disabled people suffer significantly from poverty; it has also been recognised by the Government in the wider arena that the amount of money that we need to enjoy or exercise independent living needs to be safeguarded. The impact of economic management that the current Government are having to face is going to have a significantly disproportionate impact on disabled people, and that was the focus of the campaign and continues to be so. That is being evidenced by the range of partners who took part in that rally and lobby of Parliament. It is interesting that there is almost unanimous agreement across a range of organisations that historically do not usually agree with each other. But whatever the focus for their work of the disability charities providing services for disabled people, when they are in dialogue with the people receiving those services, as we are, the impact is disproportionate. Say for example there is a cutback to access to work; that impacts on our opportunities for continued employment in a way that would not apply for someone who was not reliant on support services to continue to help us. Similarly, with disability living allowance, one of the negative impacts of the current economic climate on people receiving the mobility component of the disability living allowance is the fact that petrol has more or less doubled in cost, and there has been no recognition of increases in the cost of going from A to B. For some of us who rely completely on our cars, which are provided through government schemes, we still have to meet twice what we were originally paying out three years ago in order to get from A to B. The whole thing is disproportionate, and that is what we wish to emphasise.

Q14 Lord Morris of Handsworth: Perhaps I may ask a supplementary question, because it is important that we have the widest and clearest understanding of the issues and of the reasons for your march, for example. Is there a particular provision on disabled people in the Welfare Reform Bill that would, in your view, impede independent living in a way that breaches the UN convention?

Julie Newman: If anything impedes independent living, it is in breach of the UN convention; that is the bottom line. One of the significant difficulties that we have with the Bill is the active consultation. We do not believe that there is an active and fully inclusive consultation with disabled people, and that immediately puts us in breach. We can identify specific areas and submit them formally in writing; we would be happy to do so. The key issue is lack of active consultation.

Neil Coyle: There are specific proposals. We have touched on scrapping mobility support for disabled people living in care homes, which prevents inclusion in the broader community. The axing after one year of employment support allowance for people in the work-related activity group presents a further financial barrier and certainly does not promote equality of opportunity. The abolition of the disability living allowance is also an issue. The DLA was the original personal budget, the original extra help to cover the additional costs of living with a disability. It was introduced in 1990 under Margaret Thatcher and was a key means of supporting independent living for thousands of disabled people. The disproportionate and targeted prevention of independent living and inclusion that the Welfare Reform Bill’s cumulative effect will produce comes combined with a narrative that somehow the disabled people receiving the support are faking, or are not entitled to it, so that it should be targeted elsewhere. A key example of how independent living just is not factored in to the Welfare Reform Bill is the complete failure not just to evolve but to provide impact assessments and an analysis of the numbers of disabled people who will be affected and what the outcome will be.

Q15 Lord Morris of Handsworth: Is it possible for you to give the Committee a note on where the Bill, in your judgment, specifically breaches the UN Convention?

Neil Coyle: Absolutely.

Q16 Baroness Campbell of Surbiton: I apologise to the Committee; in my supplementary question, I did not declare my interests. I will do so now-if you have an hour to spare. I am the trustee and co-founder of the National Centre for Independent Living. I am also the chair of the Government’s Rights Control Advisory Group. I am co-chair of the All-Party Parliamentary Disability Group. I am a personal recipient of the disability living allowance and community care direct payments. Until December last year, I was chair of the Government’s Independent Living Scrutiny Group. I think that that is all-but, like when you get married, if anybody knows any interests that I have left out, please feel free to speak out.

I particularly want to ask about safeguards and safeguarding. I want to focus again on human rights, violations of human rights and why Article 19 might not be safeguarded in the way that you might want. In your evidence-this is a DRP question-you said that some of the duties and obligations that protect and support disabled people are under threat: for example, from the red tape challenge organised recently by the Cabinet Office. Could you give examples of safeguards that are essential to independent living and why they should not be subject to this red tape review? We have already touched on the duty to involve; can you give examples of others?

Marije Davidson: The red tape challenge is a very broad review of different pieces of regulation. They are now looking at health and safety and in June they will be looking at equality. In July and August they will be looking at social care. They will be asking the wider public for their views on the regulations and, in the case of equality, also at the primary legislation. The equality duty remains an important safeguard. However, the Equality and Human Rights Commission, as a body, does not protect us. The Equality and Human Rights Commission is currently conducting an inquiry into disability hate crime and disability-related harassment; it is partly scrutiny of relations in society and partly about what public bodies should do to protect disabled people. That is a very fundamental part of independent living-disabled people’s ability to live free of fear and feeling secure. Having a body like that, which checks on the state of the nation and intervenes when something goes wrong but also actively promotes equality, is a very important safeguard. I provide a note to the Committee, as Lord Lester requested.

Another safeguard is the role of user-led organisations locally and nationally, but mainly locally, and their ability to communicate with local authority decision makers and make sure that the right decisions are made; to make sure that if there is an adverse impact then steps are identified to make sure that does not happen.

Jaspal Dhani: I will just add to that. We feel that the planned cuts to services like legal aid will also have an adverse effect on disabled people and their ability to exercise their rights. Where disabled people feel they have been discriminated against by having welfare benefits removed, services reduced or access to employment infringed, we are not really quite sure where they will turn to get the level of support that they will need for legal representation. In the past, that has been available through legal aid and also through HIC, for example. The concern is that disabled people not only stand to have their rights reduced but also the resources available to them to exercise those rights are likely to be reduced as well.

Neil Coyle: It is impossible to have an ability to live independently and be included in the community if employers, education establishments and others do not know what to do in order to make it possible for the disabled to live independently, so here the Equality Act, the reasonable adjustment provisions and the role of the Equality and Human Rights Commission are absolutely key. Without those bodies and without that support in terms of practice development at the Equality and Human Rights Commission, for example, it is impossible for other people in society to know what they need to do in order for disabled people’s living independently to be included.

Q17 Lord Lester of Herne Hill: Is not the fundamental problem about the red tape challenge that all the safeguards in the Equality Act are essential and that, at a time when one is trying to promote a culture of support for the equality agenda, to suggest that the thing might be scrapped or an example of overregulation creates problems? One is talking about fundamentals rather than technicalities.

Marije Davidson: That is absolutely true. If you talk about the red tape challenge, equality and support seems something that costs money. Actually, inequality costs an awful lot of money. You talk about an enormous pool of talent wasted. You talk about people who cannot work or mostly cannot work because of the attitudes of others and the barriers that are there. It is about independent living-people being able to participate if you do not have equality. If the barriers like attitudes, physical bars and communication are not broken down, then how can you expect people to participate? That is absolutely right. The Equality Act has been the product of many years of people bringing case law built on the experiences of people feeling imprisoned. It is absolutely right to keep the belief and promote it rather than say, "It is too hard". No, it helps everybody, the Disability Discrimination Act 1995. Now, many employers know what they have to do. They may not always do what they are supposed to do, but they know that there is no reason for that. Trains are much more accessible; they need to be more accessible. Healthcare is more accessible. It saves money.

Q18 The Chairman: Mr Coyle, are you going to quote Oscar Wilde for us-his definition of "philistine": someone "who knows the price of everything and the value of nothing"?

Neil Coyle: I was not intending to; thanks for the comment. It is really important to remember where we are at right now, which is that a third of disabled people still live in poverty. Half of disabled working-age adults are not in employment. Those barriers need tackling. The Equality Act helps tackle those issues. If we want to generate a society where disabled people are more capable of self-managing, if you like, the Equality Act is absolutely essential to delivering that. To suggest otherwise is deeply offensive for the thousands of disabled people who campaigned for decades to get any kind of disability discrimination Act introduced in the first place.

Q19 Lord Bowness: I fear that this question has probably been answered, but it applies particularly to Mr Chishti’s question, when you referred to lack of consultation. At an earlier meeting, Members asked Ministers whether the Government had conducted impact assessments relating to their obligations under the convention when introducing changes to the disability living allowance. The Minister for Human Rights said that public expenditure decisions have to be taken and, of course, that the department will keep an eye on anything that would look like a flagrant disregard for human rights. The Equality and Human Rights Commission has accepted that it cannot at present advise on the likely impact of the Government’s proposed changes, but calls on us to press the Government for information on cumulative impacts. Other than consultation, is there anything that the Government can really do to assess in advance the impact of policy changes on independent living or compliance with the UN convention? Perhaps I may ask a follow-up question at the same time. Are you satisfied that the Government are taking adequate steps to monitor the impact of policy changes and cuts to funding, including the impact of changes made by local authorities? If the answers to all those questions are no, what is the answer? What should they do?

Sue Bott: One of the problems is that policy changes have been introduced too quickly and have not really been adequately thought through to the end. The consultation on the disability living allowance and its replacement by PIP is a classic example. I remember thinking, when I read the consultation document, "I don’t know how on earth I’m supposed to comment on this in any great detail", because what is being put forward in the consultation document does not really tell me, other than that we will have this benefit called personal independence payment, how that will work out on a day-to-day basis. It would be extremely difficult for the civil servants then to go away and do some kind of impact assessment. Critical to the new benefit is how it will be assessed and who will be eligible for the new benefit. It is not really until you know the answer to that question that you can really assess what the impact will be. We have rather a bizarre situation where a major change is being proposed in the Welfare Reform Bill without any detailed information behind it. No one can have much of a clue about what the total income impact will be. We can only surmise what it will be; and the only really known factor that we have is George Osborne announcing in his Budget speech last June that DLA-which, incidentally, he grouped as an out-of-work benefit; but, of course, it is not-would be cut by 20 per cent. That seems to be a very strange way to approach policy decisions. You have to understand why policy is there in the first place and work out what you are going to replace it with. Then you know what the impact is going to be.

The Chairman: We are very conscious of time. I apologise. We have one big question left, and then I will ask you to write to us with your concerns about the issues that we may not have covered today. We will also ask you a series of questions that we have not been able to address today.

Q20 Lord Dubs: So far, a great deal of emphasis has been about money and cuts, and so on. The Government have told us that although difficult choices are being made to tackle the deficit, they intend to ensure that disabled people with the most difficulties are effectively supported to live an independent life. The Government stress that independent living is not just about money. Do you agree with the Government’s assessment that meeting the obligations of the UN convention is not just about money?

Julie Newman: I would really welcome an opportunity to respond immediately by saying that one of the areas of discomfort that UKDPC has had in relation to this hearing and to the wider dialogue is that when we refer to the convention we seem to have lost the language of rights. The question that was asked previously about ensuring that the convention is effectively implemented must hinge on rights. I strongly advise that we go back to a dialogue about rights and the use of the justice system, if necessary, to ensure that that is upheld.

Neil Coyle: There are means of delivering greater independence at reduced cost. I know that portability of care assessment across the country is close to the heart of one of your Members here today, but routinely tackling overassessment would be beneficial and would save money. But contrary to that, we are going to have a personal independence payment assessment at £675 million, which may require deaf-blind people to turn up for a regular review even without there being a change in their circumstances. There is existing evidence of other cost benefits to be derived, particularly in the long term, by supporting people through early intervention. For example, there is the ODI’s Better Outcomes, Lower Costs report and the Audit Commission has done work on this. There is a wealth of evidence. At the same time the Government is moving to a situation in welfare reform whereby disabled people moving into work is guaranteed, if you like, in terms of how the Government is changing its expenditure. We are not seeing that level of investment in social care despite the fact that there are growing costs from carers not being able to go into work, resulting in people not being supported, so that there are downstream costs, if you like, of failing to meet needs now which investing in independent living would help to resolve. There is a broader point there around the cuts narrative. It is almost as if it is being suggested that you can just take this money away and it will not have any impact. That links back to the previous question. We know what cutting DLA might mean because we know where DLA is spent. Disabled people have been surveyed for years on what they use it for. Some of it is spent on prescriptions, some on accessible transport. If you start peeling that support away, the impact is quite clear. There are downstream costs for the health service that we think will be quite considerable. Coming back to the rights point, we know from Disability Alliance research that disabled people are saying that without some of the support that is being peeled away, they will question the value of continuing to live. Those costs need to be taken into account as well.

The Chairman: Thank you very much. Thank you all for coming along today. On behalf of the Committee, I thank all of you who have given us written evidence and remind you that we will be writing to you to ask specific questions but we may not cover all the issues that you wish us to cover. Please add particular issues into any memorandum. For example, I have picked up the very central question of rights. I would also add into that the whole impact of devolution and localism. I am very conscious of the fact that rights are universal and that the whole ethos and strategy of localism and devolution may well cut across that. Could I also ask you to reflect on the fact that there is no specific Minister dealing with independent living as such? You might wish to suggest-I have not seen this yet in any written evidence-that there ought to be a lead Minister with cross-cutting responsibilities. However, I may be speaking out of turn there. Perhaps somebody has written about it. Thank you very much and have a safe journey home. I now ask the next witnesses to come forward.

Examination of Witnesses

Jim Elder-Woodward, [Independent Living in Scotland] Pam Duncan, [Independent Living in Scotland] Rhian Davies, [Disability Wales] and Paul Swann [Disability Wales].

Q21 The Chairman: Good afternoon. For the record, could you please introduce yourselves?

Paul Swann: My name is Paul Swann. I am the independent living policy officer with Disability Wales.

Rhian Davies: I am Rhian Davies. I am the chief executive of Disability Wales.

Pam Duncan: My name is Pam Duncan. I am policy officer for the Independent Living in Scotland project.

Jim Elder Woodward: My name is Jim Elder Woodward. I am the convenor of the steering group responsible for the Independent Living in Scotland project. May I ask the Committee, if they do not understand what I am saying, please indicate and my colleague will interpret.

Q22 The Chairman: For the record, we were due to have witnesses from Northern Ireland. As most of you know, they were unable to travel because of the volcano in Iceland. As with the previous witnesses, we assume that you all support independent living as a basis of government policy, but are you all happy that the UK Government and each of your devolved Administrations or Governments share your understanding of what independent living means for disabled people?

Rhian Davies: Disability Wales fully supports independent living. We have been campaigning for some time for a national strategy on independent living in Wales. An issue for us is that Wales appears to be the only country in the UK that does not have a specific overarching strategy on independent living. We feel that that is a huge loss for disabled people in Wales. We have been working away, lobbying, campaigning with the Welsh Government and other bodies to secure the introduction of an independent living strategy.

Pam Duncan: In Scotland we have a very specific approach to independent living. The independent living movement’s definition of independent living is that disabled people of all ages have the same freedom, choice, dignity and control as other citizens at home, at work and in the community. We then go on to say that it does not mean living by yourself or fending for yourself; it means rights to practical assistance and support to participate in society and live an ordinary life. We already have that in our submission so I did not just read it out for no reason. The issue of practical support to live your life with freedom, choice, dignity and control is central to the way that we view independent living. In Scotland we have a shared approach to that vision. If you wanted to download the whole vision on independent living in Scotland, you could see it on our website. We share that vision with the Convention of Scottish Local Authorities, the Scottish Government and the disabled people’s movement in Scotland.

However, we have some concerns about the shared understanding. We believe that there is considerable patchy provision, not just across government directorates, but between central government and local government. We also feel that the buy-in towards independent living relies heavily on strong leadership. So we are not sure about the buy-in below strategic level.

I am sure you will be aware of the concordat in Scotland, which presents some issues and challenges for independent living in Scotland, because very often there is a difference between what central government think and suggest and what local government then consequently do. The concordat is there in the middle.

In the UK as a whole, we are concerned that, although the Government recognise in rhetoric that they share the definition, some of the approaches to independent living and to disabled people that we have seen recently-for example, within welfare reform there are cuts to DLA and the closure of the independent living fund-represent a strong focus on retrenchment. We do not feel that that supports independent living. We also feel that for independent living to be a reality, collective co-production is essential, and strengthening the voice of disabled people and their organisations to challenge decisions and oppression, which you have already heard about earlier this afternoon, is crucial. We are not sure that that has translated into what we have seen in recent months.

Q23 The Chairman: I take it that there is a dialogue between Wales and Scotland and that you would wish to encourage that dialogue, given the differences between Wales and Scotland.

Rhian Davies: Yes. I know that there have been joint meetings between Wales and Scotland. In our discussions with the Welsh Government we have promoted particularly what has been going on in Scotland, because there is perhaps a greater feeling of affinity with the Scottish approach to independent living, compared to Wales. The stumbling block for Ministers in Wales is that the model adopted around independent living in England focuses on personalisation, which politicians in Wales see as privatisation by the back door. In Wales we are particularly committed to the ethos of public services and there is huge concern about dismantling of the welfare state, social services and the NHS and so on. That has been a particular challenge for us.

We presented a manifesto calling for a national strategy for independent living ahead of the recent Assembly elections. We have adopted our own definition of independent living, which is that it "enables us as disabled people to achieve our own goals and live our own lives in the way that we choose for ourselves". We have been promoting that with the Assembly in the absence of its having its own understanding of independent living, I would contend. Recently the Assembly introduced the social care charging measure, which addressed the postcode lottery of charging in Wales. In the guidance produced for local authorities, we put forward our definition of independent living. That was picked up by the Assembly, so I guess that we are inching towards the door, but we recognise that we still have a long way to go on encouraging the Assembly to be proactive on this issue.

Q24 Mike Crockart: To a certain extent, the question that I was going to ask has been answered by what you have said already. I address this first to Independent Living Scotland: you have suggested that although the policies in Scotland are good on paper - you have certainly given a clear statement of what that vision is-there is a gap between policy and the experiences of disabled people. You have talked about one thing that points towards how that gap could potentially be closed in strengthening the voice of disabled people. Are there other concrete things that you think could be done to try to close that gap?

Pam Duncan: I think that there are several things that could be done. First, there should be a real focus on rights and on human rights in the United Nations Convention. We also believe that the issue of localism has presented some huge challenges to independent living. Often, localism is seen as debate between central government and local government, but in fact we see the difficulty as being the difference between localism and human rights. Recently we had a discussion on the issue of portability, which the Committee will be fairly well attuned to, and the issue of localism is particularly pertinent there. When one local authority can make very specific decisions on care and support in that area, it can then become a barrier when trying to move either to or from it as a result of that. It was defined by our colleagues in COSLA as the difference between legitimate localism, which looks at developing local people’s ability to coproduce local community decisions that are suitable for that community, and illegitimate localism, which goes head to head with the human rights of disabled people. We suggest that addressing some of those intricate issues of localism is crucial.

We also believe that a lot of policy translating on the ground, and from the UK Government, focuses very much on raising thresholds in the economic situation that we find ourselves in. We believe that we need to have a stronger focus on prevention so that we recognise that empowering disabled people is the way, in order that they can contribute as equal citizens in society, rather than raising thresholds. For example, across the board we are seeing eligibility criteria rising to the point where you get life and limb support. In fact, that, coupled with the cuts to the independent living fund, means that people are essentially imprisoned in their own homes. We do not believe that that approach is necessary; in fact we consider it to be economic suicide if we do not take a preventative approach and consider that disabled people should be able to live in society with freedom, choice, dignity and control as others do.

Q25 Mike Crockart: I turn to Disability Wales. You have already said that the problem there is not so much the gap between policy and implementation but the lack of policy. Privatisation by the back door is something that I understand from the Scottish perspective; it is certainly a major barrier to overcome. How do you see movement towards overcoming that barrier so that people understand that it is more about personalising rather than privatising?

Rhian Davies: To be honest, the very fact of being here today is a huge opportunity for us to present our case on the need for an independent living strategy in Wales. It is extremely embarrassing to us that in the draft report on the progress of the UN Convention on the Rights of People with Disabilities, in the Article 19 part, Wales has no section on what it is doing around independent living. I hope at least that the message is going back down the M4 that we urgently need to address this issue.

The issue in Wales is that the approach has tended to be focused on particular impairment groups-we have an older people strategy and we have had strategies around people’s learning difficulties and mental health-so the view is very focused on people’s specific impairments. There is no overarching sense of a right to be able to live independently in the community, whatever your impairment and whatever characteristic you might have. Other issues that Wales has taken forward have tended to be fragmented.

One of the challenges that we face is that the whole debate on independent living is seen to be one of social care, not of rights. An example of that is that when we put forward our petition to the Assembly last year calling for a national strategy, the petitions committee referred it to the Minister for Social Services in the Welsh Assembly Government, not the Minister for Social Justice and Equality. We are really at the starting blocks.

The Assembly would say that it has a commitment to direct payments, but it is very patchy in Wales. Take-up is very low and depends on individuals championing it at the local authority level. Disability Wales did some research on accessible housing registers in Wales, which we know make a huge impact on looking what accessible housing stock exists in an area. We discovered that just 10 of 22 local authorities have an accessible housing register. On transport, there is a strong commitment to access to rail, but there has not been the same commitment to bus travel. The challenge that we have is there are pockets of good practice, but they are not joined up. The resources are not being pooled; there is no overarching vision; and there is no sense that disabled people have a right to live in and have access to their own homes, to have the personal support they need to be able live there, to use mainstream transport and to use facilities in the community. I am here today to make that case.

Q26 The Chairman: I note that the written evidence from the Welsh Assembly Government, now called the Welsh Government, was from Carl Sargeant , the Minister for Local Government. On the basis of what we have been hearing, I assume that when we invite Ministers to appear before us they will include a Welsh Minister. But I am not at all certain that it would be Mr Carl Sargeant; it may well be Jane Hutt, who has as part of her portfolio equalities issues.

Paul Swann: Jane Hutt is the Minister for Finance. I doubt that she would come herself.

Q27 The Chairman: But someone has a particular brief on equalities. She has in the past held that brief.

Rhian Davies: Before the election, Carl Sargeant had the equalities brief.

Q28 The Chairman: We will write to the Welsh Government immediately following these questions.

Pam Duncan: On that point, one of the things that I missed was also a joined-up approach. It is absolutely essential and Rhian picked up on that. One example that we have is of a woman who had approached her social worker for a wheelchair and a ramp so that she could get out of her house. That social worker was unable to access the budget that would have paid for a wheelchair or the housing budget that would have paid for a ramp. Instead, the woman received 35 hours of community care a week. To some people, that would be essential, but, for that woman, it was neither what she needed nor what she wanted. The result was a longer-standing commitment to 35 hours of community care every week, but still no ramp or wheelchair. So she could not get out of the house. That shows that a joined-up approach is essential not just for independent living – what use is an accessible bus if you cannot get out of your house to get to it? – but also at corporate level in terms of decision-making, access to budgets and sharing resources. Leadership is crucial there. We have seen in Scotland that where you get leadership at corporate level, you really can effect change further down the line which people can feel.

Q29 The Chairman: On general issues, could I ask both Wales and Scotland – if I can describe you in that way – about the impact of the Government’s proposals for reform of the benefits system together with cuts to local authority funding. Is it your view that this could lead to a breach of the Article 19 of the UN convention?

Pam Duncan: Absolutely.

Q30 The Chairman: In which way?

Pam Duncan: In several ways. As was alluded to earlier on, our view is that disabled people are the hardest hit as a result of a lot of the changes that have taken place. Disabled people face a double whammy from those cuts. For example, we are facing it in our pockets, but we are also facing it in our services. With only 49 per cent of disabled people in work, and almost 90 per cent of them in the public sector, we do not need to be geniuses to work out that their jobs are under threat. People on benefits are no better off because they will be disproportionately affected by the £18 billion of cuts. At the same time, charges for services are increasing. For example, in some local authorities in Scotland, the charge for community care has gone from 25 per cent of your disposable income to 50 per cent of your disposable income. In others, it is as high as 100 per cent of your disposable income. It is leaving disabled people very cash-strapped. The answer is not in them. Local authorities are strapped for cash, and disabled people are too as a result of some of these changes.

On services, we are already hearing of disabled people being told by local authorities that they do not have enough money to support them to live in their own home so, as a result, they will provide them with an incontinence pad that will last for 12 hours so they will only need to see them twice in 24 hours. Where are the human rights and dignity in that? With cuts to DLA, services and disabled people’s organisations-and we have a plethora of evidence of this that we can share with the Committee later in the interests of time-the cumulative impact will be that disabled people will not enjoy their right to family life and community living, as Article 19 states. The Independent Living Fund has a crucial effect on those people who draw down from it, specifically when local authorities are cutting back to such low levels.

Rhian Davies: I support everything that has been said. We have a particular concern in Wales because we have one of the highest proportions of disabled people in the population in the UK. We also have one of the highest numbers of people on incapacity benefit or employment and support allowance, as well as a very high number of people on disability living allowance, so the cuts will have a devastating effect, not only on individuals but also on communities because, rightly or wrongly, within Wales there are communities in which the benefit economy supports the whole community. We are not only seeing services being stripped away but access to things such as shops and amenities because there will not be the wherewithal for people to use those facilities. I particularly want to mention a case well known to us about the Independent Living Fund.

Paul Swann: A young man in North Wales, who is now in his late 20s, went to university and completed his degree. He is a wheelchair user. The local social services department knew that when his time at university came to an end there would be a range of issues, particularly around housing. While at university, this young man experienced independent living. He describes himself as fiercely independent. The situation that he was forced into arose particularly because of the closing of the ILF to new applications. He was one of the first to be affected by this. The consequence is that that young man is still living at home with his mother and father at the age of 27 or 28. He lacks independence. He is fighting for his independence. The financial aspect is critical to him. He does not want to live in shared accommodation with other people whom he does not know. He wants to live independently in his own home and to have an independent life. At the moment, because of the way that things are going, that is little more than a dream.

Q31 Baroness Campbell of Surbiton: We have covered this quite a lot but I am really going to get to the bottom of it. I want to know why, from what you have said and from all the evidence we have received so far, there is complete opposition to the closure of the Independent Living Fund and why those who have previously received ILF grants cannot look to their local authority for that support. We have been told that local authorities will do exactly what the Independent Living Fund did. It does not make sense to have a separate Independent Living Fund when disabled people can get direct payments from their local authority in exactly the same way. So where is this opposition coming from? Do you not trust your local authority to do this? I want to get to the bottom of why that is.

Rhian Davies: In Wales, we have over 3,000 people on the Independent Living Fund. I know that local authorities in Wales have taken full opportunity of the availability of the Independent Living Fund to apply for top-up funding for people, particularly those with high support needs, so we have accessed that fund. I think that £9 million comes to Wales through the ILF. Because that fund existed, that was the route that you took. Now that it has been taken away and the money is not being distributed, so far as I know it is not coming back to us. We have floated the suggestion that the £9 million for people in Wales could come to Wales as a pot of funding, but we have not really progressed that. I know that it was controversial setting up the ILF. People could access it-

Q32 The Chairman: I do apologise. There is a Division in the Commons and we have to follow procedure and leave. I shall certainly be coming back, as will Mr Crockart, although I am not at all certain about my colleagues here. Mr Crockart and I will run down and run back-with difficulty.

The sitting was suspended for a Division in the Commons.

Q33 The Chairman: I apologise for that interruption. You were saying?

Pam Duncan: We were talking about the impact of the independent living fund. Baroness Campbell asked why we opposed its closure. We highlight several implications of it. We believe there are human rights implications of closing the fund. 17% of the independent living fund’s budget was drawn down in Scotland which, as I am sure you are aware, is more than the Barnett formula that you might expect, so there will be a disproportionate impact in Scotland from closing the independent living fund, because our local authorities and disabled people were quite strong at drawing down on that. We are committed, through various international human rights instruments, to promote independent living for disabled people. I am sure that the Committee is acutely aware of those. We believe that with rising eligibility criteria, diminishing budgets at local authority level, taking this crucial millions of pounds out of the system for disabled people and their care and support will have serious implications for the realisation of these rights.

We also believe that those international obligations do not diminish in times of financial difficulty. In fact, they are even more important in order to protect disabled people who, it is widely documented, will take longer to come out of recession than anyone else. We think there are independent living implications, specifically. The independent living fund offered a flexible, portable alternative to traditional services and, of course, to the life and limb support that we have heard about that local authorities are offering at the minute. It was a crucial top-up to that.

Politically we think there are implications across local and national government, including devolved Governments. There are specific agendas to which the independent living fund was crucial, not least the self-directed support and personalisation agenda, but also the whole-place approach. Sue indicated earlier that removing one card means that the whole house of cards falls. We all know that getting people back into work is very prominent in the political agenda. Without the independent living fund and that crucial top-up, for many disabled people work will be a distant reality. Further, there is the impact that removing that money will have on charging policies, but also for disabled people, some of whom are charged by ILF for their care and some are charged by local authorities. That has not been thought through and has some very significant impacts in Scotland.

Economically there will be less money to fund the care and support that is essential to meet the human rights of disabled people and to meet the aspirations of the independent living strategy and the vision for independent living in Scotland. Without all this together, disabled people will be unable to contribute to society in a way that could mean that they lifted themselves out of the poverty that they currently experience and play their part in lifting our society out of poverty and to be seen as contributors instead of consistently being seen as benefactors. That is why we are opposed to it.

On the question about local authorities, the bottom line is, trust them or not, they do not have the money. Whether or not they would use it in that specific way again comes down to decision. We would argue that, unless we have a strong commitment to collective co-production and a strong commitment to disabled people’s organisations and the right of disabled people to self-express, collective co-production is very difficult. We will be faced with questions in Scotland such as, "Are you happy with the freeze on council tax?". Most people will say yes, but if disabled people are not engaged in that debate, we get other things being squeezed. For example, in Scotland now we have a freeze on council tax costing the country £310 million, but at the same time they collected £350 million in community care charges in the same year. Collective co-production is essential for that, whether local authorities were to be trusted or not. The bottom line is that they do not have the money to fit the bill. It is essentially moving one cost on to another department, or in this case another devolved authority.

Q34 Baroness Campbell of Surbiton: Thank you, I think you have answered that question now. Moving on to the Equality Act, neither Wales nor Scotland placed much emphasis in your written submissions on the role of the Equality Act 2010. What role does the Act play in the protection of the right to independent living? Maybe you can tell me why you did not place much emphasis on the Equality Act. You have both been big players in the Disability Discrimination Act.

Rhian Davies: First, I have to declare an interest. I am a member of the Wales Committee of the Equality and Human Rights Commission, and ex officio on its Disability Committee. We have an interesting situation in Wales. As I have gone on at length about, we have been trying to lobby the Welsh Assembly Government to introduce a national strategy on independent living. So far they have been resistant to that, but they have proposed that the Wales-specific duties in the Equality Act could be used as a lever to achieve our goals of independent living. We thought was an interesting approach. It is worth mentioning that the Wales-specific duties are very comprehensive and go significantly further compared to the public sector duties in England. We are looking at strategic equality schemes and strategic objectives, for example.

Having consulted with the Equality and Human Rights Commission in Wales, we agree that the Equality Act has an important role, particularly around the involvement of disabled people in terms of the planning and design of services, but on its own it probably would not be able to deliver the kind of overarching strategy on independent living that we are seeking. It will be an important tool, but in terms of an overarching strategy it is probably not the sole answer that we are looking for.

Pam Duncan: We take a similar view. It is very much a tool in the box for disabled people to use. You will be aware that the specific duties on the Equality Act are still under consultation in Scotland, so technically we do not have any specific duties yet in Scotland. We expect that that situation will change very quickly and we will have them. We welcome them as a tool to our box or a string to our bow. We fundamentally believe that things like assessing the equality impact of a decision are essential to mitigate against budgetary decisions that might have a negative impact on disabled people, but for that to be truly effective, we think that disabled people have to be at the heart of decision-making. In Scotland, we also have the general duty to pay due regard, which we welcome, but we absolutely believe that we have to involve disabled people at the heart of decisions like this so that the impact can be fully understood. As our colleagues in Wales have said, it is very much a tool in the box. We see independent living as a human rights agenda. Underpinning that are various pieces of legislation that support disabled people.

Jim Elder Woodward: Overall, there has been a diminishing power to meet the needs of individuals. Taking away the resources of people to be represented undermines the impact of the equality agenda. Disabled people have no real recourse or legal support to take a case to court. That is a real infringement underpinning individual human rights.

Paul Swann: As we know, the Equality Act 2010 is essentially about reducing, or ideally eliminating, discrimination against people with so-called protected characteristics. We are seeking something much stronger in terms of the need to dismantle the barriers to independent living for disabled people. That brings in the social model of disability, which in our case the Welsh Government signed up to in 2002. We are still a long way from having the social model of disability implemented in practice. The social model provides the foundation for independent living. As my colleagues have said, we will actively engage in developing the special duties in the Equality Act 2010, but we need much more than that; we need a national delivery strategy on independent living.

Q35 Mike Crockart: Turning to the broad topic of whether it is all about money, I am trying to look at other ways of doing things rather than just asking if there is enough money in the system. The evidence from Independent Living in Scotland to the Scottish inquiry on preventative spending said that independent living should be recognised as a preventative agenda. Could you spend a little time explaining what you mean by this and tell us of any policies that you think would promote prevention?

Jim Elder Woodward: We believe that every individual should be empowered to be active within the community, to be involved not only in employment, but in other areas. That person will be much more active and healthy than if they are sitting and waiting for someone to come in twice a day to help them cook and go to the toilet. The big debate is between demand and supply of services. If you only cater for the acute and substantial, that debate is going to get wider and wider. The two will never meet. But if you could spend a little more on preventive measures to help people in later life, their health will be maintained, their psychological health will be maintained and they will not be left around at the end of their life, as they will be if you ignore them completely.

The concentration on critical and substantial need is very short-sighted economics, because you are just getting a bigger and bigger backlog, going down the line. The other thing is that you are going to increase the amount of gaps in people participating in the labour market and you are going to get more money into the system than you would if you spend only on those who are in critical need and cannot contribute to society and their community. I hope that you could understand what I was saying.

Q36 Mike Crockart: Absolutely. Thank you. Turning to Disability Wales, you had a slightly different tack in your submission on this topic. In supporting the Welsh Government’s sustainable social services commitments, you referred to the way that the Welsh tradition of mutuality will be called on to inspire new co-operative models of care and support. Perhaps I could ask you to say a bit more about this and say what role mutuality could play in delivering independent living.

Paul Swann: In Wales we set off down the personalisation track in a similar way to In Control in England. But we have a very different situation in Wales, socially and economically. It became clear quite early on that we needed to develop a Welsh model of personalisation. An alliance of local authorities, providers, citizens and representative organisations have come together under the umbrella of the Wales Alliance for Citizen Directed Support. We are looking at how we can develop that Welsh model. As you say, we believe that the Welsh tradition of mutuality is a key factor in that. There are three core principles on which we believe that a Welsh model of personalisation should be based: choice and control; change and transformation; and, critically, community. We are very interested in developing that emphasis on community in Wales.

You mentioned doing things differently. Instead of the top-down approach that has been adopted in England, we are looking at how we can nurture local innovation so that different local authorities pick up and run with pilot projects that are appropriate to their circumstances. Critically, it is about citizen involvement. Disabled people know what we need to be put in place but very often decisions are made about us without us. That is not acceptable.

You mentioned the sustainable social services paper. It is very strong about getting things right from the start. If we can do that, we prevent problems and costs occurring further downstream. As colleagues mentioned earlier, there is evidence to show that independent living is cost-effective. We are quietly confident. We were quite pleased with the way that the sustainable social services paper took on board many of the recommendations of the independent commission on social services, which sat last year and took a lot of evidence. A lot depends on the National Social Services Partnership Forum, which will be Minister-led and set up shortly. If the mix of that is right, and if there are enough conversations and enough careful listening takes place, we hope we will be able to develop a community-based approach to personalisation, which will allay many of the genuine concerns that have been expressed in Wales.

Q37 Mike Crockart: I should like to come back with one very quick question. There seems to be a jarring happening there. You are talking about localism local authorities and community-based activity. Earlier we were talking about the difficulties of localism versus the general rights of disabled people. How do we marry the two up? If we want to promote mutuality and see whether that can work across a wider area of the UK and in Scotland, which I think it possibly would, there is a difficulty in that it will necessarily mean different care in different areas.

Rhian Davies: That is the dilemma. We would like to achieve a very strong commitment and direction from the Welsh Government that a right to independent living is essential and for them to lay out to local authorities and other public bodies what should be expected in terms of the kind of services that they deliver, but also what disabled people can expect in terms of rights and entitlements. Like Scotland, Wales has urban areas, post-industrial areas and rural communities. We also have Welsh-language communities. There is a natural diversity that we would want to celebrate and support, and not in any way do away with that. There is a sense in which, at local level, there will be initiatives that reflect that, but it has to be captured in an overall framework or in an overarching strategy that says, "This is our direction of travel; this is what we stake our place as a society on". It is about the rights of individual people, who in this case are disabled people.

Pam Duncan: I relate back to what I said earlier about where localism supports the co-production of local communities and where it supports the right answer for the community. Like Wales, Scotland has very specific geographical or local issues that need to be considered. When that comes up against the human rights and independent living of disabled people, that is when it needs to be challenged. We would like a commitment to the universality of independent living and to see it as a universal right, regardless of where you stay. I live in Stirling just now. I would love to live in Glasgow. I work there and I travel every day, but I cannot move because the local authority’s eligibility criteria are such that I may not secure the funding package of support that I already have. Their charging policy is so different that it might be unaffordable for me to move there. As a result, my carbon footprint is much bigger, because I am using the car every day to get to and from Glasgow and I am restricted in the number of hours and the way that I can do my work, all because I cannot get a care package in the local authority where I would like to be.

That sort of thing is an example of how those tensions across local areas come head to head with the human rights of disabled people. There needs to be a national framework of entitlements and rights that sees independent living as a universal right and sees human rights as the universal right that they are.

Jim Elder Woodward: There is a dilemma between localism and individual human rights. I cannot remember who said this, but somebody said that democracy is the best of the worst form of Government, because it is always for the utility of the majority. If you are a minority, democracy does not always help. The way out of this, I believe, is for the minority of disabled people to be encouraged through independent living to become part of the democratic process, so that their voice is heard among the other more major voices within democracy. Unless you can facilitate the social and civil as well as the economic involvement of disabled people, the voice of the disabled minority will not be heard. This is where localism needs to get involved with the needs of disabled people in the local decision-making process. I hope you can understand what I am saying. The present input of social care, will not allow you to participate economically and socially in the community. Until we have a voice in local democracy, localism will not represent our human rights.

The Chairman: Thank you very much for that. I think that you have summed up the essence of this very important evidence session. You have had a receptive audience here. Much of the evidence seems to run counter to the prevailing view of endorsing localism and devolution. As somebody who has supported devolution since the 1970s and continues to do so, I do not support it on the basis of devolving to be different, and certainly we do not support devolving to result in something worse.

When we come to have the Ministers before us, we will be asking questions about why devolution is resulting in something that is not necessarily better. I look forward to hearing their answers. No doubt they may be scribbling away already.

We will be writing to thank you and to pose other questions that we have been unable to ask today. Please feel free to add in the memorandum that you will be providing to us anything that you feel we have not covered today. It has been a very comprehensive session, but I am sure that there are other matters that you would wish to address. Thank you very much.