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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

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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 ILF 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

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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.

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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 cliches 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

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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

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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, to 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

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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

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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

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trustees and staff 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 light 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,

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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 15 people in the employment threshold and how we are gradually bringing this down, but I shall not do so tonight.

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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.

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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.


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