Lords Hansard text for 14 Jul 200614 July 2006 (pt 0957)

and are tied up in block contracts and costly residential provision. We could support more people to achieve truly independent living by redirecting those resources into the system proposed by the Bill, as other noble Lords have mentioned. There ishuge support for the Bill from individuals and organisations across the board because it is rooted in people’s experiences and delivers the new approach they want. Disabled people must have control over how, when and by whom their personal assistance is provided. Inflexible support makes it difficult, if not impossible, to work and participate in public and community life.

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I hope the Minister will give the matter of earned income some thought and reply on it. At present, earned income is disregarded for home care charging and independent living fund payments—my noble friend Lady Wilkins successfully campaigned for that—but not for other forms of support. The report Improving the Life Chances of Disabled People highlighted the continuing barriers to work thrown up by the current system. A disabled person living in residential care faces significant financial disincentives to seeking paid employment, as he would be able to keep only £20 a week of his earned income before it has to be used to pay the residential home fee. In a footnote, the report stated:

So we are talking about only a very small number of people. The report also stated that,

Thus the policy on disregarding earned income for community care charging,

Will the Government act on this as a matter of urgency? It would not cost very much, but would make a massive difference to the people concerned. I hope when the Minister answers she may be able to respond on this or will indicate that she will look into it. I think it could probably be done without the Bill. I do not know whether primary legislation would be needed to change this. I would be interested to know whether we have to wait for the Bill, because this would concern only a small number of people. To give an example, a man of 28 who has lived in residential care for the past five years—although he was told that it was only a temporary measure—is a first-class honours graduate in geophysics from the Open University. He has recently been headhunted for two jobs designing websites accessible for disabled people. He has had to refuse and is doing voluntary work designing websites and teaching IT in a school once a week.

If individual budgets and self-directed support are to work effectively, we need a solid infrastructure of information, advice, advocacy, expertise and support. For that reason, the life chances strategy pledged an independent living centre for disabled people in every locality by 2010 to help make that a reality. However, at the moment, centres are closing because of lack of core funding and inequalities in the contracting process, and there is no plan to secure this key recommendation. The Bill requires local authorities and NHS bodies to develop, support and sustain local user-led organisations, including centres for independent living, and to foster partnerships between them.

I passionately hope that the Government will support the Bill. It does everything that they say they want to happen, and more. Disabled people welcomed the commitments to independent living in the White Paper on life chances, but there is a danger of those commitments coming to be viewed as nice rhetoric

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with no prospect of being turned into reality. The concepts of choice, freedom and independent living litter many a government policy document, but there is no reference to them in community care law. If we want to make independent living real, we need a new law that reorients our whole social care system towards independent living. That is precisely what the Bill would achieve, so I hope that it has a speedy journey into law.

3.39 pm

Baroness Greengross: My Lords, much well respected research—for example, that headed by Professor Sir Michael Marmot at University College London—has clearly demonstrated that lack of autonomy in decision-making, lack of control over one’s life and lack of feelings of self-respect and status can shorten one’s life by several years. We know that disabled people tend to live shorter lives than able-bodied people. How iniquitous it is, therefore, to rob people of the autonomy that we all ought to take for granted, sometimes thereby robbing them of a crucial aspect of quality of life and, sometimes, of years of life itself. That is one reason why I congratulate the noble Lord, Lord Ashley, on his Bill, which is of the utmost importance and relevance to disabled people of all ages, as well as to us all. His vision and leadership in this field and the work of the Disability Rights Commission in preparing the Bill are to be admired.

I declare an interest as patron of New Beginnings, an alliance of organisations from all sectors that encourages people into work and, once in work, to have a career and develop it. I am also a patron of SHARE, a London initiative providing vocational and skills training for people of all ages with physical and mental disabilities—sometimes very severe ones—and chief executive of a think tank. I am vice-president of Age Concern, where we continually consider the impact of the ageing of society on people of all ages and on society as a whole.

Independent living is a policy priority. We know that existing demands on carers, usually family members, will increase and that the increasing care needs of an ageing population will mount up if we do not do something to get our priorities right. Evidence consistently shows that people want to remain independent as long as they possibly can.

The Bill is welcome because it recognises the right of disabled people to the same control, freedoms and opportunities to make choices as the rest of the community has. It gives people the right to choose to have direct payments and thus determine how their services are delivered. It is inclusive; it demands inclusivity. It covers people of all ages, thus removing some of the iniquitous distinctions in support for people aged 65 and over. It is now well known that, if you acquire a disability, you had better do so before you are 64, otherwise you will be deprived of many of the benefits that other people can take for granted. It recognises that discrimination is the single biggest factor impacting on the mental health and well-being of older people in this country.

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The Bill gives disabled people a single assessment of their needs. At the moment, we know that the silos in departments and among authorities responsible for providing services prevent many people from getting the services that they need—certainly in the way that they would like. It gives people some choice as to how services are delivered, which gives them autonomy and a sense of control that they have never really experienced before. At last, it places a duty on statutory authorities to co-operate, to pool resources and to promote independent living.

The Bill would remove the scandalous current situation whereby private and voluntary sector homes do not come under the definition of a public authority with regard to the Human Rights Act. We know that there are cases under review at the moment in which people have been treated appallingly because of that awful loophole in the law, which I know the Government want to do something about—I hope that the Minister will be able to assure me that the Bill would get rid of it.

The Bill will also allow for review of care for those people who are in institutions against their will. That is an abuse of the right to autonomy, which is what we are talking about, but it is also an appalling situation when people who would like, and need, to be in some form of institutional care, because they cannot manage in their own home, cannot always get access to that care because of a shortage of places. The Bill would remove a lot of unfairness in that respect.

The Bill makes the case for a proper debate on the very important issue of how care is funded now and, more important, how it will be funded in the future. But this is not just a Bill that will increase the cost to the nation; it will relieve a lot of pressure on carers—60 per cent of informal carers are women still—and as a spin-off it will give them a chance to participate more in the workforce. It will therefore promote gender equality and better family life. We know the difficulties that many carers experience in trying to fulfil multiple roles in difficult situations. The Bill will also bring social and economic benefits in later life to many people who at the moment are excluded from many such benefits.

I wish the Bill a successful passage through this House and another place. It will help to ensure a better quality of life for people in our society who deserve no less if we are to be called civilised.

3.46 pm

Lord Addington: My Lords, the noble Lord,Lord Ashley, has displayed once again his key parliamentary quality: persistence. He has not let the issue of disabilities rest. He has been battling away for considerably longer than I have. At times, I think, “Haven’t we done enough? Haven’t we pushed the Government far enough?” But the noble Lord comes back again and again. I congratulate him and those who have worked with him on the Bill.

When going through the Bill, you discover that there is nothing new there. Every aspiration has been accepted by all Governments that I have seen while in this House and by all parties at various times. The

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problem—and this is a problem of government, not of a particular party—is that the issue is “difficult”, or does not “fit in”.

I went through the clauses, deciding which was my favourite. It is Clause 5, the smallest one:

Making bits of government work together to achieve common objectives is probably one of the great targets that Parliament should aim for. The Chinese walls of Whitehall and other parts of the government system are sometimes so dense that nothing happens between them. Ministers have a great responsibility for bridging those walls, or punching holes through them—whatever is required to get there. When an Act takes on that responsibility, it will have to tackle probably the major cause of inactivity among government departments, where the aspiration is there, and make the departments talk to one another. They might then realise that, once they get out of the “my little budget” zone—and it is usually no more than that—they still have a responsibility to continue, not just if they are pushed by a persistent Minister.

Having got that little rant out of the way, I shall consider the rest of the Bill. It is valuable, because it addresses the tendency of us all to be slightly protectively condescending to someone whom we do not quite understand—the “Does he take sugar?” attitude that is there in all of us, in a way. We must fight against that. Those whom we do not understand we are slightly frightened of—slightly wary—and we think, “Maybe this is safe for you. Maybe you’ll be worried out there”. As my noble friend said, the problem is when parents get frightened. Parents are usually the initial carers of most of these groups. Most of the bodies that look after and support people with disabilities usually start with parents as the formation base.

We have to remember that people are individuals first and foremost. I hope that this Bill will be a step forward for disabled people by allowing them to organise their lives and occasionally get it wrong or make mistakes—or get something of which we do not approve, which will be more normally the case. The emphasis on advocacy, support and information that runs through the Bill is its underlying strength. The Government must find out who needs help. These things will draw everything together to ensure that, if we co-ordinate help, it will go to the right people.

The current service of help and support is effectively a mirror or reverse image of battlefield medicine, where those who are least badly damaged are patched up first in order to get them out again. We wait until something is critical and broken down before doing anything. In particular, the health service finds itself a catch-all for everything that has gone wrong. We incur costs at the extreme end because we do not intervene earlier. The Government should give advice and support to enable people who can work to do so. If that is not possible, people should at least be able to organise their lives so that they are fulfilled and do not have unnecessary problems associated with mental illness. People want to interact positively with the rest of society. If that is

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done, many costs will be avoided. There could be, for example, acute support service costs if intervention is incorrect.

If the Government can assure us that some of this will be taken on board—in the Bill, co-ordination and advocacy immediately grab me—there will be no need for the noble Lord’s Bill. However, I suspect that the noble Lord will need to carry on battering and using his persistence, and that we will need to go through Committee stage in order to at least drag out a clearer idea of the Government’s thinking on how these needs will be met.

The noble Lord is continuing in the rich vein of form that he has had since I came to this House. He makes sure that the Government are kept up to the mark and that those of us who have less natural persistence and a less keenly felt sense of purpose carry on. This Government can safely say, “We have done more than any other Government”. That is true, but previous Governments could have said that, too. We could do this almost Parliament by Parliament, as we build on law that has been passed by previous Governments. We have to make sure that we continue to apply this. There are no new ideas, although these are well put together in one new form. I hope that the Government and the noble Lord, Lord Ashley, will give an assurance that we will have further discussion on the Bill and that the Government will tell us exactly where they think they have got in their independent programmes for meeting the ends that are brought into focus by this Bill.

3.53 pm

Lord Skelmersdale: My Lords, I thank the noble Lord, Lord Ashley, for introducing this subject today. He would be quite in order to be extremely gratified by the many speeches that he has heard in praise of it. The Second Reading of his Bill has also persuaded my noble friend Lady Verma to speak to us for the first time, drawing on her particular—I am tempted to use the word “peculiar” in its 18th century sense—knowledge of caring, carers and the establishments in which they operate. I hope that we will continue to have her advice when these subjects come up, which she will find they do quite regularly in your Lordships’ House.

Your Lordships will have heard my starting point in discussions about disability many times, but it does no harm to re-state it. The noble Lord, Lord Addington, almost did so. My fundamental belief is that disabled people are people first and disabled second. From that, it follows that any rights that able-bodied people have are automatically transferred to disabled people. Therefore I agree with the noble Lord, Lord Ashley, that it is important that disabled people should be empowered to have access to those rights—in my view, this is really an access Bill as opposed to a rights Bill. The obvious example is access to transport, with which we dealt at length in the Disability Discrimination Bill over the winter of 2004-05. Being able to get about is quite clearly part of independent living. The Royal National Institute

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for the Blind has made the point forcefully by stating that people are frequently made housebound by their blindness.

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