Disabled People

HL Deb 22 March 2000 vol 611 cc373-96

9.3 p.m.

Baroness Wilkinsrose to ask Her Majesty's Government what plans they have for the future of personal assistance support for disabled people of working age in order to further the Government's policies for independent living, welfare to work and the prevention or social exclusion.

The noble Baroness said: My Lords, the subject of tonight's debate is the support that many disabled people must have in order to function and take part in daily life—help to get up in the morning, to wash, to dress, to eat, for some even to breathe. We are talking about a basic and fundamental need; it is not a matter of choice.

The Government are to be congratulated at the outset on setting goals which meet the long-held aspirations of disabled people. The emphasis they have given to independent living, to the prevention of social exclusion and the opportunity for work rather than welfare has provided a clear focus in approaching the complex subject of disability policy and provision.

The existing policy on long-term care—or personal assistance support, as disabled people prefer to call it—is particularly complex and confused. In many ways it runs counter to these goals. This confusion has continued to fester while we await the Government's response to the recommendations of the Royal Commission on Long Term Care. The commission proposed that the provision of personal care should be free, paid for out of general taxation. I hope that tonight's debate will demonstrate that this is essential if disabled people are to be given a level playing field to contribute to society and to be included in the Chancellor's "Britain with opportunity for all".

The current complex patchwork of personal assistance support has three main problems—it is rationed; it is discretionary; and it is means tested—all of which conflict with government policies for independent living, welfare to work and the prevention of social exclusion.

There are three different sources of personal assistance for disabled people of working age. The first is through the independent living funds (ILFs). There are two funds: the original, more generous, fund set up in 1988 called the extension fund, and now closed to new clients; and the 1993 fund which works in liaison with social services departments. The latter have to contribute a minimum of £200 in cash or services towards a disabled person's care package before ILF help can be offered. The ILF is a discretionary fund with assessment procedures which are not transparent.

The second source is the local social services department, either through a direct payment or by direct services such as a home carer or district nurse. Again, local authorities have a large degree of discretion in how they provide direct payments, and in parts of the country—particularly the north and Wales—many authorities have still not done so.

The third possibility, if you are in paid employment, including self-employment, is the access to work scheme. Again, implementation is very variable around the country. In some areas people have been told that their access to work PA may not assist them with going to the lavatory as this is "personal care", not "work related".

This range of provision is complex and confusing. Users have to account for each source of money differently, completing a series of complicated forms. Each of the three sources carries out its own assessment, with different eligibility criteria, so that it is a geographical lottery whether one's needs will be met. This creates huge insecurity, fear and anger. All that disabled people are asking for is a level playing field so that they can contribute to society like everyone else.

Surely it is scandalous that we can be complacent about a situation where disabled people live in daily fear of their basic needs not being met—not being got up in the morning, fed or taken to the lavatory. Is it not time that personal assistance was recognised as a fundamental human right?

It is to the social services department that a disabled person first goes if one has care support needs to be met—and here is the first major difficulty. This basic care is rationed, more and more strictly, according to each local authority's eligibility criteria and resources. So it is a postcode lottery whether one gets any help at all.

Out of Services, the report published today by the Needs Must Coalition, sets out the appalling effect that this rationing is having on disabled people's lives. Cut-backs in local authority budgets, charging policies and the effect of the Gloucestershire judgment which allowed local authorities to consider their resources before providing services has led to a crisis in community care provision and a huge decrease in support for independent living.

I welcome the Government's commitment made in last year's White Paper, Modernising Social Services, to end this postcode lottery through such measures as the fair access to care initiative. However, initial reports of this are disappointing, particularly for severely disabled people who want to work. The Fair Access to Care framework ranks people into priority groups. Risks to life and limb invariably rank highest, which means that quality of life needs, including going to work, emerge as a low priority. What is more, Fair Access to Care does not remove the problem of people who need to move to take up a job: they cannot take their agreed care package with them but have to start all over again with a new authority. That is an impossible, time-consuming hurdle for most job offers. If the Minister would consider "portable" personal assistance packages, so that people moving to another part of the country could at least take their package with them, it would do much to relieve the problem.

One of the worst effects of local authority rationing is the ever-present threat of residential care with which disabled people with high support needs have to live. There is a ceiling on ILF funding. If someone's care needs exceed about £32,000 a year, the full cost has to be borne by the local authority. That leaves people with the highest support needs vulnerable to the fluctuations of local authorities' budgeting. For example, a year ago, users in Tower Hamlets were shocked to discover that in order to make savings of £250,000 the council was about to introduce a policy whereby anyone whose independent living package cost more than residential care should actually be placed in an institution. That meant that severely disabled local users, like Dr Ian Basnett, a deputy director of public health in inner London, might be forced into residential care, losing his job, and liberty, while society lost his contribution and that of disabled people like him. Public protest removed the threat that time, but there is nothing to stop it happening again.

The Government's acceptance that there should be a ceiling to the cost of independent living is causing great fear. That rationale is not applied to other public services. Someone with four school-age children is not told that only two of them can be sent to a local state school. I urge the Minister to bring an end to this ever-present threat of institutional care.

Finally, it is the means testing of provision which is the current urgent focus of concern. The ILF and many local authorities impose a means test on disabled people needing personal assistance which ensures that there is a permanent major barrier to employment, and especially to any form of advancement. The ILF trustees themselves raised this problem of "work to welfare" with the Government and in January the Minister relaxed the rules. ILF clients may now keep 45 per cent of their earnings between £30 and £200 a week. Above that figure, they still have to pay everything they earn towards the full cost of their care.

Now there is a new crisis. The ILF has written to all clients asking, within the month, for up-to-date information for a financial reassessment, warning that it could, affect the amount we are able to offer you under the new rules".

Dave Morris, who started Independent Living Alternatives, points out that a large number of working disabled people have negotiated support packages with the ILF and social services based on the fact that their income is not taken into account. If those people are now to be financially reassessed and have to contribute a large amount to their care, the majority will be forced out of the employment market and back onto benefits. As he says of his own situation, I estimate that if my income is taken into account the bulk of my funding will be withdrawn by the ILF. I will face a pay cut of roughly £400 per month or give up paid employment … The fact is that unless you are seriously rich, if you require more than 30 hours personal assistance per week, then it is not worth your while working".

What is the point of the Government pursuing this damaging means-testing policy? It is self-defeating. Not only does it directly conflict with the welfare to work policy; it merely results in lost revenue to the Exchequer from income tax, council tax and the additional costs in benefit. It is totally demoralising to disabled people, containing the implicit assumption that if you need personal assistance you cannot reasonably expect to achieve the same in life as non-disabled people.

The Government have stated that they want to focus help on "those most in need". ILF money is not a social security benefit. It is there to fund disabled people's support in the community to avoid residential care. The only result of "targeting" ILF resources on the poorest disabled people will be that everyone in need of ILF support is trapped on benefits at far higher cost to the state.

I have been able merely to headline some of the problems in this vital area of concern for disabled people. What is needed is a fundamental review of the funding of personal assistance in order to ensure that disabled people are given a level playing field to contribute to society.

Last December, the Government gave a disappointing response to the House of Commons Education and Employment Committee recommendation that a cross-departmental working party be set up to tackle the barriers to employment posed by the "personal assistance trap". Will the Minister reconsider that recommendation, expanding its brief to cover all the areas of concern touched on in this evening's debate? Most importantly, the working party must include the expertise of external organisations with direct experience of personal assistance.

In the meantime, will the Minister give an undertaking that the ILF will be asked to suspend its financial reassessment of clients and that all means testing of earned income should be suspended pending review? That would go some way to reduce the current panic and would reassure disabled people with personal care needs that the Government are serious about enabling them to work and to live independently and about preventing their social exclusion.

9.14 p.m.

Earl Russell

My Lords, I thank the noble Baroness, Lady Wilkins, for introducing this question. She is a distinguished recruit to this House and to the mobile bench, which is one of the glories of this House. She has taken us into many areas which urgently call for scrutiny. Her remarks about the ever present threat to residential care should equally move humanity and the Treasury. Very few can achieve both those objectives at once. I congratulate her.

Since this is a disability matter, my noble friend Lord Addington speaks from the Front Bench, I speak from the Back Bench. We have agreed that I shall deal with welfare to work and that he will deal with the independent living fund. If I do not develop the noble Baroness's points on the question of the independent living fund, it is because they will be dealt with by my noble friend.

The Minister knows that I have quite considerable theoretical misgivings about the basis of welfare to work. I shall not develop those now. They seem to me to be beside the purpose of today's debate. But, if the approach can be well placed anywhere, it might be in relation to people with disabilities, where the level playing field to which the noble Baroness, Lady Wilkins, referred is still quite a long way off, and where a programme of assistance with job seeking, job selection and so on, funded by the state and guided by a personal adviser, could be of very great value. The question is whether it will be, or whether it will be clouded by a series of assumptions in government thinking which are somewhat wide of the case.

Welfare to work is by its nature a top-down approach to the problem of employability. People are being fitted into holes. They may be square pegs in round holes but they are still being fitted into them. We on these Benches would be much happier to think in terms of the creation of opportunities, making it easier for people to do not what the Government have thought they ought to do but what they themselves want to do. There may be a very large area of overlap, but it is vital that we should find the right starting point.

The conditions under which a welfare to work programme for people with disabilities might succeed would include, first, that there is not too much counting of the cost. In the light of the noble Baroness's remarks about residential care, that could be an economy. I remember watching the noble Lord, Lord Ashley of Stoke, in another place, when he had an enormous teletext machine with which he very effectively followed the debates. That sort of equipment clearly is not provided for nothing. It was an investment, and a very valuable investment in the public interest as well as in the noble Lord's interest. If that sort of thing is to be done on any large scale, it cannot be clone cheaply. Secondly, it must be done for equality of opportunity, for the level playing field that the noble Baroness mentioned, not for any overall reduction in unemployment. Thirdly, the disabled person, not the adviser, must be the final judge of what it is considered the disabled person may be able to do. Nobody else can possibly know how much it hurts; nobody else can possibly know how much exhaustion it causes; nobody else can possibly know for how long it is possible to sustain the posture in which the job must be done.

With regard to the question of the cost of personal assistants, I shall not gild the lily of what the noble Baroness has said. It is pointed out by RADAR that there is no financial provision for the cost of transport. With many, but not all, types of disability, transport is one of the gravest and most expensive problems. If you cannot get people to their places of work, there is no point in making them employable. What the noble Baroness said about people being able to take their care packages with them is also well worthy of thought.

So far, we have had an underspend in relation to this cost. This is because at this stage we have only pilots. It may not be significant. But there has been quite severe underspending in other areas of the New Deal—the over 25 pilots and lone parents—causing The Times to remark yesterday that this is a Government which contacts but does not spend. As the new deal for the disabled goes forward, I hope that it will not prove necessary to repeat that approach.

With regard to the question of increasing employment, we are told that the new deal for disabled people in its pilot form has created work for 2,000 people. The noble Baroness and I had some exchanges last week on the subject of substitution, as a result of which I was profoundly unsatisfied. We agree on both sides that there is no evidence of substitution; namely, that when someone is put into a job because of welfare to work it means that someone else does not get that job. What I cannot understand is how there can be any increase in the overall number of jobs created by the programme except if the welfare to work programme gives the person the skills to take a vacancy which would otherwise have remained untitled. It may be stupid of me, but I cannot see any way round that. If the Minister can help me I shall be interested.

But the most important factor is the ability of the individual to be judged. Mr John Denham, answering a Question for Written Answer on this subject in November 1997, said that for people of working age work was the best form of welfare. If he had only inserted the word "normally" I would have been completely happy. Not all disabled people are capable of work; not all disabled people who are capable of work are capable of every kind of work. It is vital that those who cannot should not feel liable to any kind of stigma for that reason. After all, it is no fault of theirs and not the kind of thing that anybody ever does voluntarily.

It is also worth remembering that there is not a single activity known as work. People who are, for example, paraplegic may be perfectly able to work as telephone operators. I would not recommend that job to someone with hearing difficulties. Someone with hearing difficulties may be perfectly well able to do a job involving heavy lifting. Therefore, there must be a real fitting of people to jobs and jobs to people, and that is an area where the judgment of the disabled person must be vital. What I do not want to hear, as casework anecdotes emerge from the pilots, is evidence of people being put under pressure. That can happen both ways. There are reports of advisers making a blanket assumption that because people have disabilities they cannot work. That is wrong. Most people can do something; and it may well be a job that most of the rest of us cannot do at all. But it must be the right job, and the individual must have the right to judge whether he or she can do it. I should like to be sure that I shall not need to repeat this once the programme goes forward.

9.23 p.m.

Lord Morris of Manchester

My Lords, I am most indebted to my noble friend Lady Wilkins for initiating so important a debate for disabled people this evening. She said that current provision is complex, confusing and self-defeating and that it creates huge insecurity, fear and anger among people with disabilities. Hers was, as my noble friend Lady Hollis will appreciate, the authentic voice of severely disabled people who know from personal experience the reality of living (in my noble friend's own words), in fear of being forced into residential care". My noble friend Lady Hollis will, I know, share my admiration for our noble friend and my indebtedness to her for initiating this debate.

Lifting people off welfare and into the world of work is one of the Government's central strategies. But, as the Royal Association for Disability and Rehabilitation's recent and authoritative report, Mind the Gap: Disability, Opportunity and Employment, makes plain, many barriers still litter the path from welfare to work for disabled people. At the same time, there are rules and regulations, like those of the independent living funds (ILFs), imposing a 55 per cent tax on the earnings of the disabled people they help to support, which create a major disincentive to work. Yet the help the ILFs were funded to give is for unavoidable and disability-related expense, such as that of personal assistance in washing, dressing, eating and getting to and from work.

Time is at a premium and I want to spend most of the few minutes still available to me in describing and addressing the implications of a case—that of Colin Hughes—which I find especially disturbing. My noble friend Lady Wilkins said in her opening sentence tonight that this debate is about disabled people who need help to wash, dress and eat, and some who require personal assistance even to breathe. Colin Hughes is one of them. He has to ventilate at night simply to stay alive and, in the words of The Times, the ILFs gave him the ultimatum: Leave your job or pay for your care". Colin is very severely disabled by muscular dystrophy and has had his care funded by the ILFs for some 10 years. His grant has been used to employ a live-in carer who helps him with all his daily living tasks: getting up in the morning, washing, dressing, eating, going to and from work, and functioning as a human being. Without that help he would no longer be able to live and work independently in the community. The grant he receives has enabled him to work in radio producing BBC Radio 4 programmes such as "Does he take sugar?", and "You and Yours". More recently he has worked as a television producer of "Despatch Box" and "Westminster Live".

However, last November he was told by the ILFs that his funding would be cut drastically because of his earnings. His grant, they decided, must be cut from £390 a week to £80 a week, leaving him to pay the remaining £310 a week out of his net earnings. That would have left him barely better off than he would have been on benefits.

The ILFs explained that they were imposing the cut of £310 a week because they had not realised that his gross earnings were £30,000 a year. They made it clear also that, unless he could convince them that capital of £30,000 which he had saved over the past 10 years should be disregarded, his funding would end altogether. The ILFs did not care that he will not reach pensionable age, or that he has scrimped and saved for 10 years in keeping with the Midland Bank's advice to him that he should save every penny he could for when he is no longer able to work.

Colin's funding was originally due to end on 6th February but the date was extended to 6th March. Following the recent changes to their rules, the ILFs told him that he would be required to contribute £234 a week towards his care. They would, they said, now disregard 45 per cent of earnings between £30 and £200 above income support. But the new level of contribution is still punishingly high and is a perverse disincentive to work; nor does it help the Government, since it costs much more to have a disabled person unemployed than in work. As a policy it is thus not only punitive and perverse but fiscally unsound. Colin Hughes wonders how many people would consider working if they were made to surrender up to 70 per cent of net salary to pay for their care. He says, This seriously undermines the Government's stated policy of giving disabled people an equal opportunity to work alongside able-bodied people". Following a meeting with them on 14th March, he is currently trying to put together proposals for dealing with his savings in a way that will be acceptable to the ILFs; but he will still have to contribute a grossly unjust amount of his net earnings towards his care. Clearly he enjoys his work at the BBC, but he is now having seriously to consider his future employment.

He points out that it is not only the ILFs which use means testing. Local authorities, as the Prime Minister pointed out in a letter to me about Colin's case, have the primary responsibility and use means testing too. Their policies vary enormously. They are inconsistent, difficult to understand and impossible to defend. Some charge in line with the policy the ILFs have now discarded; others charge much less; and some do not charge at all.

One most disquieting case drawn to my attention by the British Polio Fellowship, of which I am a vice-patron, is that of a 73 year-old man who was paralysed after an accident at the age of 28. He lives independently—on an industrial injuries benefit and the minimum state retirement pension—and requires help in his home for up to 14 hours a week. He was charged £12 a week for this help. Now his local authority has pat the charge up to £112 a week: a tenfold increase. That must surely be shocking to everyone participating in this debate wherever they sit in your Lordships' House.

No doubt both local authorities and the ILFs will argue that they can help only to the extent that their resources allow and that, with more resources, they could give more help. But that cannot be argued by some other sources of help. For example, of the £195 million New Deal for Disabled People funding, which was allocated to help with employment for people with disabilities, little more than £11 million has so far been spent, three years into this new Labour Government. Way could not some of that money have been used to help disabled people now in work?

I have dwelt on Colin Hughes's case because I have known and respected him for many years as a person of excelling integrity whose life has been one of moving triumph over daunting adversity. I hope very much that his plea will convince the Government that further change is urgently necessary. In a message to me this evening, he states: While current means tests remain in place, major planks of government policy are severely compromised. They turn social inclusion into social exclusion. They turn 'from welfare to work' into from work to scrapheap'. People who have to ventilate at night shouldn't have to pay through the nose for the help a wealthy, modern society based on equal opportunity should be willing to pay". The noble Earl, Lord Russell, reminded me this afternoon of the wisdom of St Paul in saying that: No law can compel a man to do the impossible". My Lords, let us not ask severely and heavily dependent disabled people to tolerate the intolerable.

9.32 p.m.

Baroness Masham of Ilton

My Lords, I thank the noble Baroness, Lady Wilkins, for initiating this debate. I have known the noble Baroness for a very long time and I pay tribute to her record of helping with many disability issues over the years.

Many aspects regarding disability came to the fore after the passing of the Chronically Sick and Disabled Persons Act 1970. I pay tribute to the noble Lord, Lord Morris of Manchester, then Alf Morris, the honourable Member for Wythenshawe, whose Bill it was. I had the ptivilege of making my maiden speech on that Bill in your Lordships' House. In 1975 I founded the Spinal Injuries Association, a self-help organisation for people who break or damage their backs and necks resulting in paralysis, with all the complications and difficulties which can ensue. The noble Baroness, Lady Wilkins, was one of our first management members of the SIA.

Also, 25 years ago the Crossroads care attendance scheme was founded, which gives help to disabled people when they need it. This came about when a young man called Noel Crane, who had broken his neck, contacted the director of the television programme "Crossroads" as a disabled person was wrongly portrayed in the programme. The director went to talk to Noel at his house in order to find out the correct image to portray. At about 11 p.m., when Noel's 70 year-old mother was nodding off in her chair, the director asked Noel, who is well over six feet tall, "How do you get to bed?". He said, "Mum puts me to bed and what's more she gets me up and dressed at 5 a.m." He could then get to work as an inspector at a Coventry car factory. Once Noel was helped into his car, he could drive to work using the specially adapted hand controls.

Thus, the Crossroads Care Attendance scheme was founded by Noel and others, with funding from the television programme. The scheme is a great help in the areas in which it exists, but the service does not exist in rural areas. Throughout the country, the scheme is patchy and is run in some areas but not in others.

Some time ago, the Spinal Injuries Association conducted a survey. It was found that many of its members needed only a little help once or twice a day. But that help was crucial in enabling them to leave their homes and go to work. Many members who have been injured and become disabled are highly trained and skilled people. To be a taxpayer is the best way to full rehabilitation and self-esteem, but with the huge handicap placed on them, and with the difficulty of obtaining reliable help and having to cope with the extra costs of disability, it is diabolical that costs cannot be set against tax.

Furthermore, means testing on top of the stresses of disability adds insult to injury. Even with tax relief and no means testing there can never be an equal playing field because all disabled people start at a disadvantage, be it in so many different ways.

On 2nd March, I attended a conference held by the Royal College of Nursing on disability awareness and nursing. Among the speakers were three qualified nurses who had become disabled. Two of them used wheelchairs. One of the nurses was also a trained psychologist and was specially trained in the treatment of asthma. They were most frustrated at being unable to gain paid work, even though their qualifications were much greater than those of some of their colleagues. They said that their Royal College had not given a positive lead in encouraging and helping them to work. The situation must be even more frustrating when lesser qualified nurses are being imported from foreign countries.

I hope that the conference highlighted the problems. The nurses who spoke were a good example of discrimination in the workplace. Can the Minister do something to help and encourage employers to take on disabled people? The sickness benefits are loaded against employers, many of whom might believe that the risk of employing disabled people is just too great. That might not always be the case, but in some cases there might be periods of illness. Could not some scheme be put into action to encourage, rather than to discourage, employers to give disabled employees at least a chance?

I know that there are various types of support, and they are welcomed, but the process of applying can be complicated with various complex forms. That often wears down the disabled person and his employer, thus jeopardising relationships. The employer may be asked to make a contribution to the overall costs. That may be the straw which breaks the camel's back.

Disabled people need to be helped with access to work through a flexible approach across the country. That does not happen in some areas where people have been told that their access-to-work personal assistant may not assist them with using the lavatory as that is "personal care", not "work-related". A disabled person needs holistic help, not a destructive, narrow interpretation.

We hear a great deal about joined-up government. Many disabled people need joined-up help. I hope that the Question tonight will help to encourage the Minister to improve the position of disabled people who wish to work. I hope that it will also encourage employers to give disabled people employment, thus preventing social exclusion, which has been the lot of so many disabled people.

9.40 p.m.

Lord Ashley of Stoke

My Lords, I want to add my warm congratulations to my noble friend Lady Wilkins. She was great! It was a star performance, and she will obviously make a major contribution; she began that tonight. I give her my warmest congratulations.

I recognise that the Government are committed to helping disabled people and have done some very valuable things. I know that my noble friend Lady Hollis is fully committed to doing what she can. Nevertheless, I have some harsh things to say about this Government.

The fundamental question which underlies the debate is whether or not the Prime Minister's promise to create "equal opportunities" includes disabled people. In other words, do the Government see severely disabled people as they see others or as a race apart, condemned to be unable to benefit from incentives to work and permanently unable to fulfil their potential? That is a simple but fundamental question.

It would be a political scandal if disabled people were excluded. However, the facts are that with present government policies many disabled people are faced with disincentives and can never achieve their potential. That issue lies at the heart of the debate. In many areas, the provision by the Government and local authorities for independent living and care for severely disabled people is pathetically inadequate. The policies simply do not match the rhetoric. The research, the briefings from all the organisations and, above all, the personal experience of disabled people themselves—I was very glad to hear the noble Earl, Lord Russell speak about the importance of the disabled person's view—all confirm the problems outlined by Lady Wilkins that the provision is rationed, discretionary and means-tested. Insecurity, patchy help and barriers to self-help abound.

This Government's fine record for disabled people is blotted if it allows disabled people's living standards to be damaged because of their disability. Yet, that is exactly what is happening. The great majority of severely disabled people rely for personal care on local authority assistance. However, since the dreadful, infamous Gloucester judgment, our fears have been realised and it is clear that the quality of that assistance has deteriorated sharply.

Perhaps I may explain that. This morning I hosted the launch of a report by the Needs Must Coalition. It revealed that refusals, reductions and complete withdrawals of services for disabled people were very common. Those were the words. Seventy-two per cent of people in the survey reported a reduction or total cut in help with bathing (72 per cent!); 70 per cent with help using the toilet (they cannot even go to the toilet!): 79 per cent with dressing; 89 per cent with help to prepare and eat meals; and 90 per cent with housework. Those are severely disabled people. When one considers the 86 year-old woman with Alzheimer's, waiting for a bath or a shower, who has to be strip-washed at the kitchen sink, those facts are absolutely scandalous.

This report on a serious situation in community care suggested that the Government's measures will have to he carefully implemented. Of course they will. But more crucially, the Government will have to be extremely generous.

Because they are not receiving the right support package, disabled people are excluded from employment at great cost to society and at enormous cost to themselves. Yet, incredibly, of the £195 million pledged with an understandable fanfare of trumpets by the Government for a New Deal for disabled people, only some £12 million—and I differ from my noble friend Lord Morris, who referred to £11 million; it is about £11¾ million actually—has been committed. Why is that? What complacency there is. What a lost opportunity. Let us think of the frustration of disabled people who want to work. Who is responsible for this scandalous state of affairs? What urgent action is being taken? I hope that my noble friend is listening very carefully and will give a comprehensive response to those points when she replies.

No one will dispute that we live in an incentive society. But it holds no incentive for those severely disabled people reliant on the independent living fund. They are subject to an onerous means test. That system, the ILF, conveys a sad, bleak and unambiguous message to disabled people: because you are disabled, you should not have the average standard of living, let alone one above average, regardless of your efforts and talents. That is my interpretation of the message.

As household earnings are taken into account, it means that a working spouse must pay the care costs of a disabled partner. It does not take an Einstein to work out the psychological effect on the disabled person and the financial effect on both of them.

I know that the Government feel that a scheme that can fund an individual for up to £32,000 per year should be means tested. I agree that millionaire types should be means tested. But it is wrong to means test that vital service so harshly, because personal assistance is a disability cost, not a luxury frill. As my noble friend Lady Wilkins said, such impositions do not apply to other public services. Why should this system stand alone? Let us imagine the public outcry if a person having an expensive heart bypass operation was told that that operation depended on a means test. But that applies to personal care and is accepted with equanimity.

Jane Campbell, a disability activist, sums up the dilemma for severely disabled people better than I can, and better than most people can. She has said: To expect disabled people to work hard and then relinquish the fruits of their labour in exchange for essential assistance to live, is a denial of our basic human rights". A bedrock of this Government's policy is that work is the escape route and that they will help with that. Of course Ministers do try to help, and I appreciate that—especially my noble friend Lady Hollis, who really does wonderful work. But I believe that it is to the enormous credit of disabled people that, despite crushing disabilities, they are willing to work and work hard to secure a better life for themselves. Yet the Government's escape route is closed to them. The idea of hard-working, talented disabled people earning a high living standard is a pipe dream under existing government policies.

So we face the lamentable fact that disabled people are denied basic rights and the Government are denied the benefits of taxation. That way, nobody wins and everybody loses. They are the economics of the madhouse and t !ley need to be changed.

9.49 p.m.

Baroness Darcy de Knayth

My Lords, I thank the noble Baroness, Lady Wilkins, for raising this important Question, which is close to the hearts of all three of us on this "mobile Bench". I for one would certainly need a personal assistant now if I had to be here by 9 a.m.

I first met the noble Baroness when she had been tetraplegic for one month. She was lying flat on her back in Stoke Mandeville hospital and I was asked to go to see her. She seemed to be bright—and, dare I say cheerful? No!—she had a sense of humour and she seemed okay. I reported back and said that I believed that she would do all right. I believe that she has done all right.

Noble Lords

Hear, hear!

Baroness Darcy de Knayth

I congratulate the noble Baroness on her masterly portrayal of how the complex web of various and varied provision and the admirable goals of furthering employment opportunities and ending social exclusion fail to dovetail. The noble Baroness knows a good deal about the subject. I find that I grow more confused the more I read about funds and payments.

I welcome the Government's promotion of the provision of direct payments. Only by having control of one's own care package can one achieve the flexibility needed in personal assistance if one is to hold down a job. I welcome also the local personal assistance support schemes which can help users to fulfil their duties as employers. I support the noble Baroness's suggestion of portable personal assistance packages. Like the noble Earl, Lord Russell, I believe that that would at least ensure the same level of care when one moved area. Both the noble Baroness and the noble Lord, Lord Ashley, were most eloquent about the effect that rationing has and the way in which it impacts on the lives of others as well as that of the user. It seems to be operating to thwart the Government's aims. I shall give three brief examples.

First, it affects one's return to work. There is a man whose care package is so limited that the extra support of informal care—in this case, by his wife—is essential rather than an extra. She is currently in hospital with pneumonia, so he cannot go to work. Luckily, he has understanding employers.

Secondly, it can have a detrimental effect not only on one's immediate family but also on the lives of their immediate families. There is a woman who needs 24-hour assistance. Her care package of £548.93 per week—the maximum allowed by the I LF and the local authority—does not meet all her assistance needs, so her daughter has had to give up her university course to look after her.

Thirdly, rationing can contribute further to social exclusion. I think of a young man whose care package of £575.63 per week does not pay for the 24-hour care needed. He has to rely on his family, whereas, like most young people, all that he would really like is to be independent and to go to see his family when he wants to see them. He tries to manage on his own and so his life and his social life are restricted.

Means testing is causing huge concern. The noble Lord, Lord Morris of Manchester, gave a graphic description of the case of Colin Hughes. The noble Baroness, Lady Wilkins, gave a clear exposition of the overall situation and of the new crisis. I hope that the Minister will respond positively to her call for the ILF to suspend financial reassessment of clients and to ask local authorities to suspend their charging policies on direct payments. I ask the Minister why it is necessary to means test at all. If we accept that personal assistance is to level the playing field so that severely disabled people can not only survive but live their lives to the full in the community, compete for jobs and pay their taxes, is it reasonable, when they have been through all the complexities of care packages, job seeking and working hard at a job which may be satisfying, albeit stressful, to ask them to go through the far from satisfying experience of forfeiting their income to pay for their care, particularly since, as my noble friend Lady Masham said, there can never be a totally level playing field?

The National Centre for Independent Living believes that it was not really envisaged when the ILF started that significant numbers of clients would be able to work and that reform of the ILF needs to be approached in that context. If the disincentives were removed, many ILF losers—I mean users; sorry, that was a Freudian slip!—would come off benefit and so go into employment. I particularly urge the Minister to do all that she can to end means testing of partners. It is quite illogical. It is not consistent with local authority charging policies; the community care service is not allowed to means test partners. It places undue strain on relationships and even prevents them. The NCIL quotes the predicament of a severely disabled man who is tetraplegic. He is a trained accountant. His wife is a teacher in work and they have a small child. When he asked the social worker what was her usual advice in relation to partners' incomes being assessed, she replied, "I tell them to get a divorce"! Is that not a swipe at the key building blocks of community and society?

Another man, again tetraplegic from the age of 19, needs 24-hour care from two personal assistants the whole time. For 11 years he has had an important, successful, stressful and demanding job with BT. He is deeply concerned at the possible implications of the current review. He may have to change his lifestyle and even give up work because he may not be able to afford his newly ordered, expensively adapted car in which case he could not get to work. He adds: The ILF also requires you to declare any income your partner or wife receives. This is a working tax that has to be borne by your partner or wife which I feel is totally unfair. Although as a single person I am not currently affected by this, however, how do I explain to someone that, 'yes, I would like you to be my girlfriend, but if we start living together you will have to help pay for my care?". He also says: I have three friends who are all in exactly the same situation". That does not make for social inclusion. The NCIL's information from the ILF in May 1999 was that part of their proposal submitted to the Government was the removal of means tests on partners. I urge the Government to end not only means testing of partners' income but also of the clients' income, to enable severely disabled people to have control of their lives and to play their full part at work and in the life of the community.

I warmly support the call of the noble Baroness, Lady Wilkins, for a cross-departmental working party, including the expertise of members of organisations with direct experience of personal assistant services to examine in depth all these issues so as to get the provision to match up and meet the Government's aims.

9.56 p.m.

Lord Addington

My Lords, I congratulate the noble Baroness, Lady Wilkins, on introducing the debate. Virtually everything that I have to say has been said in one form or another by at least one noble Lord which means that I shall not detain the House for long.

The major theme running through the debate is the problems encountered with ILF and the fact that it is means tested. It has the potential to drive people out of jobs or will not allow them to take one. A benefit that is supposed to allow people to live properly in fact stops them working.

The well crafted way in which the debate was placed on the Order Paper shows the absurdity of the situation. The Government have told us to fight for social inclusion. We must get people working so that they feel part of society. As my noble friend Lord Russell has already mentioned, there are one or two caveats to that approach. If we take social inclusion as the goal, we must deal with it as soon as possible. It is ridiculous that people are encouraged to work, to live a reasonable life in reasonable comfort, or at least are allowed to breath and live properly, but then we take away the vast majority of any income that they earn; the proceeds of work.

For many people in work their pay packet is their justification or status. Noble Lords may approve or disapprove of that, but that is a fact; "I am worth so much". It was said to be one of the great triumphs of the previous administration. We must bear that in mind when we say that disabled people cannot keep the money they earn because the state is keeping them in a reasonable condition, enabling them to live. Surely that is wrong.

There are clichés like, "Rome was not built in a day", but in trying to bring the whole thing forward in a new society, I should like to hear the Minister say that the problem will be dealt with in the near future because the absurdity of this has been spoken of time and again.

This is one occasion when I feel that the Minister should have five or six of her colleagues beside her. Most of the time when dealing with disability issues a question is put to a Minister, and the Minister bats it to another department. Transport is a classic example. How often have we spoken about the problems of getting to work? Personal assistance can be brought into the issue of transport. The noble Baroness should have someone from the Department of the Environment, Transport and the Regions beside her. Personal assistance would probably not be needed if every train was accessible and taxis could be relied on to turn up and accept someone with a guide dog. I could continue on this theme. However, something must be done to ensure that personal assistance is made available to enable disabled people to cope with the world the way it is.

As a firm general rule, my party does not approve of means testing. This is one occasion when its removal would greatly help a group and would set a precedent. If people are to be helped back into work and helped to get access to their work, that policy must be backed by action. I heard an interesting story about someone with severe dyslexia who received help when training to become a legal executive. Unfortunately, that assistance would not apply if she chose to continue her training to become a fully qualified lawyer. She was in some danger of having her career path blocked. A case like that highlights the need for cross-departmental consultation on this issue.

We need to look at the whole package in this area. The notions of local support and direct payments for social care have already been mentioned by other noble Lords. However, the level of support differs between areas, 'which is an absurdity. The Government must treat this holistically so that marginal costs are dealt with alongside core costs. I hope that the Minister will be able to give the House strong reassurances on this subject.

10.1 p.m.

Lord Astor of Hever

My Lords, like other noble Lords, I congratulate the noble Baroness, Lady Wilkins, on introducing this important subject to the House tonight. I was personally very moved by the sincere and knowledgeable way in which she made the case for personal assistance support for disabled people of working age. As the noble Lord, Lord Ashley, said so wisely, it was a star performance.

Last year I broke my femur and for a time was confined to a wheelchair. I needed help with washing, dressing and other basic needs which until then I had always taken for granted. It brought home to me the day-to-day problems and social barriers faced by disabled people in a world largely designed to suit non-disabled people. I am now able bodied again, but most disabled people are disabled for the rest of their lives. For that reason, I am enormously sympathetic to the points made by the noble Baroness.

Personal assistance enables disabled people to control their own resources and support staff and helps them to lead lives as full and spontaneous as those of non-disabled people. The noble Baronesses, Lady Wilkins, Lady Masham and Lady Darcy de Knayth, are each one of them proof that disabled people with severe impairments can live active lives and contribute to society.

The noble Baroness, Lady Wilkins, made the point that the existing policy on long-term care continues to fester—I believe that was the word she used—while we await the Government's response to the recommendations of the Royal Commission on Long Term Care. Meanwhile, of course, the sale of an estimated 40,000 homes a year to pay for care home fees continues, causing great distress. I understand that the Government will make an announcement this summer. Can the Minister confirm that that is the case?

The noble Baronesses, Lady Wilkins and Lady Darcy de Knayth, and the noble Lords, Lord Morris, Lord Ashley and Lord Addington, all agreed on the problems surrounding the Independent Living Fund and means testing. Among some of the ILF younger clients who want the opportunity to work and develop their careers, there is a real sense of dissatisfaction towards means testing of clients' wages and those of their partners. The means test effectively caps the amount an individual can earn, creating a maximum wage for ILF recipients who work. In January new rules were introduced, supported by the Government, which mean that ILF clients can now keep £106 of their wages above the level of income support after housing and council tax costs are taken into consideration. While that is better than the £30 extra clients used to be allowed to keep, there is a deep sense of anger and injustice among disabled people that the ILF and the Government have fudged this issue and failed to remove this particular means test.

By working, disabled people with complex needs not only lose their benefits but also access to community care grants and other sources of funding. While the ILF means test of wages is in place, it will continue to lead many disabled people who need high levels of personal assistance to believe that they can never take on paid work. That must be wrong. Some local authorities do not understand the potential of the ILF. Many have a poor record in applying on behalf of their disabled residents and deny them and their own social services departments a valuable source of funding. That, consequently, leads to great variation in the use of personal assistance throughout the country.

The noble Baroness, Lady Wilkins, also mentioned direct payments by local authorities for personal assistance and the fact that many local authorities have still not introduced any form of direct payments. That is a particular problem for those with learning difficulties and, I understand, those with mental health problems. Can the Minister say if the Government will do more to encourage local authorities to introduce direct payments for personal assistance?

The noble Lord, Lord Ashley, spoke of the important Needs Must report, highlighting the urgent need for action by the Government in the field of community care, which I understand he launched today. Unfortunately, that is just one piece of the jigsaw. The bigger picture is no less challenging; a picture full of opportunities for government to show a much greater, practical commitment to tackling social exclusion. Those measures would maximise the impact of what is supposedly already government policy.

For example, the issues raised by this Unstarred Question are of direct relevance to the United Kingdom's 8.7 million deaf and hard of hearing who face numerous barriers within a system that is meant to help them. I agree wholeheartedly with the remarks of the noble Earl, Lord Russell, about the investment in the equipment of the noble Lord, Lord Ashley, o enable him to follow debates.

Low take-up of disability living allowance among deaf people—8 per cent for the severely or profoundly deaf as against 30 to 50 per cent for disabled people in general—underlines the obstacles that deaf people face within a benefit system that is supposed to help them maximise their independence, their opportunities for employment and social inclusion.

Access to work is the key to effective transition from welfare to work. Financial support for essential equipment through the Government's Access to Work scheme is often crucial to disabled people's capacity to access the workplace and the opportunities employment brings for independence and social inclusion. Disabled people are more likely to be out of work than non-disabled people. I agree with the noble Baroness, Lady Masham, that the Government's plans to counter low awareness among both employers and potential and actual employees are inadequate. Last month we debated social exclusion in the important debate on the Rowntree report tabled by the noble Earl, Lord Russell. Social exclusion is defined by the Social Exclusion Unit as, a shorthand term for what can happen when people or areas suffer from a combination of linked problems, such as unemployment, poor skills, low incomes, poor housing, high crime environments, bad health poverty and family breakdown". The missing link that, in many cases, would connect at least six of these eight problems, but which is not included in the definition, is disability. This is a missed opportunity that risks undermining the whole social exclusion programme. As the All-Party Disablement Group, chaired so well by the noble Lord, Lord Ashley, has argued, disability needs to be at the heart of government policymaking; that means having a specific high priority on the agenda of the Social Exclusion Unit.

10.10 p.m.

The Parliamentary Under-Secretary of State, Department of Social Security (Baroness Hollis of Heigham)

My Lords, I should like to thank all noble Lords who have taken part in the debate tonight, especially my noble friend Lady Wilkins. I believe that everyone has spoken this evening with passion and compassion about the rights of, and support for, disabled people. It is right that disabled people should enjoy the rights that others take for granted—the right to independence, the right to work and profit from that work, and, as the noble Lord, Lord Astor, said, the right to play a full and inclusive part in society. We have done a lot, but we have a long way to go.

Perhaps I may turn first to the core of tonight's debate; namely, the personal income support—the personal assistance packages—for disabled people. We have done a good deal to strengthen the incomes of disabled people. Although it was not spelt out tonight, we all know that disabled people, on average, have lower incomes with which to meet higher costs. As regards benefits, we have already introduced the disabled person's tax credit, which was raised still further in yesterday's Budget. This offers a lower income taper and a higher income threshold, together with improved help with childcare costs, thus making it more generous than the disability working allowance that came into being while my noble friend Lord Carter and I were sitting on the Opposition Benches in 1991.

To my delight, the working families' tax credit pays a double child credit to families with disabled children and is worth some £25 million to 25,000 families with a disabled child. We shall also introduce a disability income guarantee from April 2001 for the poorest disabled people with the greatest care need. This will provide nearly £6 a week extra for single disabled adults and children and over £8 a week for couples. Again, that will provide more assistance.

Although its payments are not strictly benefit, we have also recently—and this is at the heart of tonight's debate—made changes to the Independent Living Fund. I should like to spend a little time on this. The funds provide valuable assistance to help seriously disabled people, who might otherwise be in residential care, to live independently in their own homes. I know, because disabled people have told me, how ILF moneys have turned their lives around. They have allowed disabled people to be at the centre of their own lives, to discover or rediscover spontaneity and to make decisions rather than having decisions made for them. For example, they allow people to decide when they want to go to bed, when they want to stay up late, and so on—indeed, everything that we associate with adulthood and take for granted.

Noble Lords raised the issue tonight of the upper limit on ILF care packages and the question of means testing, to which I shall return. However, my concerns are perhaps just a little different. The need and demand for independent living for disabled people is both overwhelming and humbling. Yet, ILF moneys—some £2 million, as my noble friend Lord Morris said—remain unspent. Nevertheless, 70 per cent of claims to the ILF are successful.

So why, taking just the 1993 fund as an example, is there so much discrepancy from place to place? Why is it that Wrexham in Wales has 77 clients on ILF per 100,000 of the population and Wakefield has three? Why has Coventry 25 per 100,000 and Kirklees two? Why has Rotherham 31 per 100,000 and Rutland no one at all? Why are not social services departments and disability organisations publicising the ILF, or helping us to publicise the ILF, more effectively? The trustees are giving presentations to local authorities, including the low take-up authorities. They have given 173 presentations since April 1998. But it is slow and hard work.

The limits on the maximum payments the funds can make have been increased and a new, more generous disregard of earnings has been introduced. This means that those seriously disabled clients of the funds who are able to work can keep up to £76.50 a week extra, which greatly, and rightly, enhances the incentive to obtain and remain in employment. I could give many examples but I shall give just one. Before the changes this spring, Mr Baker, a family man earning £25,000 a year, with two children and a care package of £500 and a local authority contribution of £200, with average housing costs and so on, would have had to contribute £66 a week out of his income, together with half his DLA. As a result of our changes he now contributes nothing at all except for the half of DLA. He is £66 a week better off. This applies to single people on lower incomes and to household incomes all the way up. These are real improvements that should be acknowledged tonight. There are currently only about 100 of the funds' 15,000 clients who are in work, although they have dominated tonight's discussion. It is right that they should find that work pays.

Clearly, difficulties can arise when people's earnings increase over time, affecting their contributions to their care package. This may have occurred in the case of Mr Colin Hughes that was described by my noble friend Lord Morris. However, no further such case has yet emerged. I can and do assure the House that the trustees and stiff of the ILF will approach any such situation and respond within the letter and the spirit of the trust deeds as sympathetically as possible.

However, it is only right that I make clear that on the basic question of means testing within the ILF regime—this was raised by most speakers tonight—the Government are still of the view that this remains appropriate, as it is for local authorities. The reason, of course, is that ILF came out of the supplementary benefit social security scheme. It has never not been means-tested. When income support was introduced in 1988, severely disabled people lost some of the premiums that they had previously been entitled to enjoy. I understand that the ILF was created to cater for their needs. They comprised a group which at the time numbered only a few hundred. ILF, and its predecessor, has always been embedded in a social security means-tested scheme. But, having said that, it is right that government should continue to keep under review the level of income and the point at which some contribution to care packages kicks in.

We recognise—this was also recognised by noble Lords tonight—that there is wide diversity in the charging regimes for home care operated by local authorities. This gives rise to excessive and unreasonable variations. We intend to address those inequities. The Audit Commission will report on this in May. We shall then consider how to tackle the problems in the Eight of its information on the extent of variations in local authority policies and, of course, will consult on the matter. We are determined to take steps so that the charges levied by local authorities on people needing assistance with personal care are both reasonable and based as far as possible on a consistent framework to ensure fairness. In response to the noble Lord, Lord Astor, I add that our proposals for financing long-term care will be completed this summer and we aim to publish a White Paper for consultation on them.

My noble friend Lady Wilkins and, I think, the noble Baroness, Lady Darcy de Knayth, asked about portable personal assistance packages. The fair access to care services policy guidance makes clear that, while local authorities may not have identical criteria on packages, none the less the receiving local authority—if I can describe it thus—is expected to continue the care packages that the disabled person previously enjoyed. If it proposes to reduce it, that local authority must provide a clear written explanation.

The noble Earl, Lord Russell, referred to the issue of transport. He is of course right about the needs of disabled people. That is why Motability has been so successful that it is now the largest car-leasing firm in Europe. I am sure that he will be pleased that this year the Government are virtually doubling the sum they contribute to the Motability equipment fund, which allows us to tailor a car to a person's individual need.

I move on to the services for disabled people reflected in the direct payments scheme, a scheme which many of us—including the noble Lord, Lord Carter, myself, the noble Baronesses, Lady Darcy de Knayth and Lady Masham, and the noble Earl, Lord Russell—championed when in opposition. This scheme was introduced in 1997 to allow local authorities to make payments to people who would otherwise receive care commissioned directly by social services departments, to allow them to control and purchase their own care needs. As the user of one DP scheme in Surrey said: I feel like a human being again. I feel I have my own life back, secure and better generally in myself". Another said: I feel that I am now free; free to enjoy life with the additional support I would like". The scheme has grown steadily. Most local authorities—at least two-thirds—now offer direct payments. I hope that the remainder follow suit. I do not know why they do not. We want to see a much greater expansion of direct payments because I doubt whether more than a couple of thousand people are yet receiving such payments. We have changed the regulations so that people over the age of 65 are eligible; we shall be supporting the Private Member's Bill of Mr Tom Pendry in the other place to extend it to 16 and 17 year-olds; we are keen to see direct payments going to people with learning difficulties, with mental problems, with HIV and AIDS, and to others; and the Department of Health is publishing a booklet to help to explain the scheme to people with learning difficulties. But, as with ILF care packages, I ask your Lordships why direct payments are not being more widely deployed. If we mean what we say about ensuring that disabled people have the dignity of making financial choices, why are the opportunities offered by the ILF and direct payments schemes being neglected in local authority after local authority after local authority?

My noble friend Lord Ashley talked about the Gloucestershire judgment and referred to the Out of Service report, which I gather was launched today. I have not had the privilege of having a copy and therefore, as yet, I cannot properly comment on it. The Government have always recognised the right and responsibility of local authorities to determine the allocation of resources and to take into account their own resources in so doing. However, this does not mean that local authorities are under no obligation to provide such services. Pressed in part by the work of my noble friend, the Department of Health reminded local authorities of their obligation, their duty, to meet those service needs in Circular 13 issued in November 1997.

The hour is moving on. I could talk about the New Deal: the fact that 9,000 people have so far participated and that 2,500 people have been helped into work. It is true that £12 million has so far been spent, but the House will be pleased to know that £61 million is already committed. Obviously this money is over three years. I could talk about rights under the DDA; I could talk about the reduction to 5 people in the employment threshold and how we are gradually bringing this down, but I shall not do so tonight.

I am sure that all noble Lords are delighted to see in place a Disability Rights Commission which will work towards the elimination of discrimination against disabled people; which will promote the equalisation of opportunity for disabled people; which will take appropriate steps towards encouraging good practice; and which will advise the Government on the operation of the DDA. Those rights are the other side of the personal support and assistance packages. To conclude, disabled people have the right to be treated with respect and dignity and to have the same opportunities that we should all have to fulfil our potential.

Some noble Lords, particularly those in the "wheelchair brigade", if I may so describe them, have said that all too often disabled people can live their life on a knife-edge of uncertainty, fearful, as Jane Campbell said on the radio last week, that any day someone could take their hard fought for liberty away from them by withdrawing their personal support. My noble friend Lady Wilkins quoted one or two such people who thought at one point that they might have to go into a home. I remember someone saying to me that, as a result of being supported by direct payments from the Independent Living Fund, he had moved from being a dependant in residential care into a home of his own, to having a wife of his own, children of his own and a job of his own—and, as a result, a life of his own.

We recognise those rights. We still have a long way to go. We are working with the Disability Rights Commission. I know that your Lordships will continue, rightly and properly, to be vigilant in the cause of disabled people. I hope that the House will accept that, on the front of independent living and direct payments, there is the capacity and potential to do much more than is currently being done. I hope that people will join with the Government in seeking to ensure that all those disabled people who can take advantage of the Independent Living Fund and of direct payments, and as a result turn their lives around, will be encouraged to do so.

Lord Carter

My Lords, in moving the adjournment of the House, perhaps I may move slightly outside our normal procedure and say that in our final debate I had a strong sense of déjà vu. So many of the speakers had also taken part in the many debates on disability that we have had over the years, and in which I and my noble friend Lady Hollis had also taken part. As Chief Whip, I note with some alarm that your Lordships have lost none of that effectiveness in castigating the Government in which I used to take part with considerable enthusiasm. I beg to move that the House do now adjourn.

Baroness Hollis of Heigham

Before it gets worse!

Moved accordingly, and, on Question, Motion agreed to.

House adjourned at twenty-seven minutes past ten o'clock.