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Baroness Wilkins rose 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 of 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
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
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.
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.
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
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 done 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 unfilled. 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
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),
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:
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,
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
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. Why 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:
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 privilege 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
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?
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.
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 be 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.
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 they need to be changed.
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.
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