Deafblind Persons Bill.
Lord Ashley of Stoke: My Lords, I beg to move that this Bill be now read a second time. Deafblindness defies the imagination of most of us. When I lost my hearing totally many years ago I could at least rely upon my sight. Similarly, David Blunkett presumably can rely upon his hearing. But to live in a world of total darkness and total silence must be a daily trial taxing the deepest of human courage and resources.
Even for those who are not totally deaf and totally blind, the dual handicap must pose a daunting challenge to everyday living. By any standards, deafblind people need all the help they can get. The sad and disgraceful fact is that this is precisely what they do not get.
My purpose in proposing this Bill is to end the hidden scandal of many thousands of deafblind people being denied the vital help they need. People with this devastating dual disability, requiring one-to-one support, are suffering neglect, isolation and loneliness.
The system of community care in this country is quite simply failing them. Some are virtual prisoners in their own homes. The simple things of life are denied them, such as getting fresh air and exercise, shopping, sorting their post, paying the bills and even visiting the doctor. The kind of things all of us take for granted are
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denied them. Most forms of entertainment are well out of reach. Yet, with skilled help, they could overcome many of these difficulties.
I pay tribute to Sense (the National Deafblind and Rubella Association), to Deafblind UK, and, especially, to Caroline Ellis, who have done splendid work. They conducted a survey which showed the extent of the neglect and the distress of deafblind people. It revealed an incredible picture. Out of Britain's 23,000 deafblind people, only one in eight receives a one-to-one service and four out of 10 receive no support whatever. The comments of the people surveyed vividly demonstrate the neglect and the low expectations. Problems roll onto more problems and are compounded and the deafblind sink lower and lower and do not expect anything better. This is the kind of vicious circle we have to break.
The comments of the people surveyed are a tremendously sad reflection on our welfare state. This sorry situation is due to three factors. First, deafblind people, because of their disabilities, do not assert themselves nor make demands. Secondly, and partly as a consequence of the first factor, most local authorities are ignorant of deafblindness. They lack the imagination to see it as a distinct disability requiring special provision. Thirdly, the Government have not placed clear statutory duties on local authorities requiring them to treat deafblind people as a distinct group. That is a matter which the Government must address. Not just this Government, but all previous governments, have failed in this respect.
A small number of local authorities have pioneered admirable schemes such as the Communicator Guide Services provided by Lincolnshire and Bradford social services. However, 80 per cent of local authorities do not provide those essential services. Can we imagine the regret that is felt at that? I repeat that 80 per cent of local authorities do not provide those essential services. Clearly there is a need for government action if we are to begin to help deafblind people.
Clause 1 of the Bill would amend the National Assistance Act 1948 so as to give legal recognition of deafblindness as a distinct disability. Clause 2 would amend the Chronically Sick and Disabled Persons Act 1970 so as to require local authorities to identify and separately register deafblind people living in their area. Clause 3 would require local authorities to assess and specify the need for deafblind services in any assessment of a deafblind person's health and social needs. Clause 4 would amend the Chronically Sick and Disabled Persons Act 1970 so that deafblind services must be provided by a local authority if the need has been assessed. This Bill will place clear new responsibilities on local authorities. Only with a Bill such as this will deafblind people living in their areas gain a better quality of life.
According to Sense, a quality service can be delivered to deafblind people for as little as £10 per hour per person. We should remember that the number of deafblind people is relatively small and that costs could be offset by ensuring that many more
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deafblind people apply for the independent living fund. Very few do
so now. That is absurd; they are the very people who need the ILF. They
do not apply for it precisely because they are unaware that they can claim
it. Most of them have not been identified and properly assessed, which
is one of the main recommendations of the Bill.
I am glad to say that the Government are aware of these problems. That encourages me to think that they will do something about them. I very much look forward to hearing my noble friend Lord Hunt when he responds to the debate. I am hopeful of a constructive response. On 20th July last year, the ever helpful noble Baroness, Lady Hollis, in response to a question from me, stated that,
"local authorities should identify all the people who need their services. In particular, they should actively seek out and contact those such as deafblind people who may find it particularly difficult to access services that they greatly need".--[Official Report, 20/7/99; col. 863.]
My noble friend Lady Hollis also said, at col. 862:
"I agree that deafblind people need specialist help to access information, interact with others and improve their quality of life".
If that admirable attitude is reflected by the rest of the Government
we shall certainly make progress on this scandalous situation. The distressing
facts are now known; the problem is recognised. All that is required now
is a commitment from the Government to implement the Bill.
I am well aware that the Government have a working group on disability living allowance for dual sensory impairments. I am well aware of suggestions for incorporating provisions on deafblindness into the national social service performance assessments framework. I am well aware of a suggested registration system for deafblind people and of suggested guidance for local authorities. But none of these would be an adequate response from the Government. They would be but helpful palliatives. I am sure that my noble friend will not rely on those inadequate responses.
To meet this truly dreadful neglect we need the legislative sanction which the Bill provides. Acceptance of the Bill will reflect well on the Government and transform the lives of thousands of our vulnerable and deprived citizens at a minimum cost. I hope that the Government will demonstrate their caring commitment and wholly accept the Bill. I beg to move.
Moved, That the Bill be now read a second time.--(Lord Ashley of Stoke.)
Lord Swinfen: My Lords, I welcome the Bill and I am delighted to be able to support the noble Lord, Lord Ashley of Stoke. He is well known, not only in this House but outside, for his work for and with disabled people. He is a doughty campaigner. The Government would be extremely wise to listen to him. He probably knows more about disability than all the government advisers put together.
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I suspect that when the Minister responds to the debate he will say that the Bill is not necessary, that what it seeks to achieve is covered by the Chronically Sick and Disabled Persons Act. But sometimes it is necessary to emphasise and to reinforce, and that is what the Bill seeks to do. It is a timely reminder to local authorities and to the Government that there is an urgent need--a need which should be looked at and dealt with properly.
Those who suffer from both blindness and total loss of hearing are sentenced to solitary confinement for life. If a perfectly able-bodied criminal were given such a sentence, it would be considered an inhuman punishment and quite over the top. We should bear that in mind. It is our duty in this House, and the duty of the Government, to make certain that that inhumanity is removed.
This is an increasing problem which is likely to become more apparent over the next 20 years or so. We have an increasing number of elderly people. As people become more elderly and live longer, they are very likely to suffer from various new and difficult afflictions. I have used a hearing aid for at least 25 years; I know that my hearing is deteriorating. The one thing I dread is losing my sight as well. That is also deteriorating; I now need glasses not only for driving but also for reading. If I take my glasses off, noble Lords across the Chamber--whose reactions I may wish to see--very often go out of focus.
This is something that we can, should and must deal with. The Disability Discrimination Act, which is only now coming into force, states that providers of goods and services must make reasonable adjustment. But that adjustment may be considered unreasonable and too expensive for those who are both blind and deaf and therefore may not--indeed, in some cases, does not--have to be made. That is something we should bear in mind.
We can overcome that situation for those who need help by making certain that local authorities provide them with deafblind interveners. That is essential. Interveners do not merely interpret what other people are saying or describe what is happening. If an intervener hands one a mug of coffee, he will not say merely, "Here is a mug of coffee"; he will say, "This is a mug. It is used for containing liquids. Be careful, it is hot; you could burn yourself." People who are deaf and blind cannot see what is going on around them and they need the most considerable help.
The noble Lord, Lord Ashley, has said everything that needs to be said about the Bill. However, I have one question for the Government. As the Bill will no doubt--according to the conventions of the House--be given a Second Reading today, and as it has now been brought to the attention of the nation and of the Government, if something is not done, will we be in breach of the European Convention on Human Rights? I should be grateful if the Minister can say whether or not that is the case.
I strongly support the Bill. I sincerely hope that the Government will also support it.
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Lord Morris of Manchester: My Lords, for me this is a moment for, I trust, a forgivable lapse into nostalgia. It was 30 years ago that your Lordships' House gave a First Reading to my Private Member's Bill that became the Chronically Sick and Disabled Persons Act 1970. It is in that wide-ranging Act that the first ever legislation to address the very special needs of deafblind children, in this or any other country, is to be found. My good and noble friend Lord Ashley was not only one of the 12 MPs of all parties who supported me as signatories of the Bill: he worked in close rapport with me at every stage of my Bill's progress to the statute book and especially in relation to the new help it sought for people who are blind and deaf.
I know that my noble friend will, like me, recall with admiration today the constancy of the support our late colleague the honourable John Astor, then the Member of Parliament for Newbury, gave the Bill. He was a dear friend as well as a lifelong campaigner for measures to improve the status and well-being of disabled people and he is still deeply missed by everyone who had the privilege of campaigning with him.
The provision made in the Chronically Sick and Disabled Persons Act
for deafblind children and young people is in Section 25. It places a duty
on every local education authority to provide the Secretary of State--
"at such times as he may direct"--
with information on the provision made by the authority of special educational
facilities for children who suffer the dual handicap of blindness and deafness.
The section also makes it plain that the arrangements made by a local education
authority for its special educational treatment of deafblind children and
young people must be given in a school maintained or assisted by the authority.
It is said that much too little has been done by local education authorities to comply with Section 25, but the responsibility for non-compliance rests not only with them. As I have shown, Ministers were given a close involvement in implementing Section 25 and must share the responsibility for any failure to make satisfactory provision in any particular case.
In the debate on my draft clause on deafblind children and young people
at the Committee stage of the Chronically Sick and Disabled Persons Bill
in another place on 26th January 1970, I put it to the Committee that it
perhaps dealt with,
"the smallest minority of severely disabled people",
but it was, I emphasised, no less important for that.
By any standard, young people who are both blind and deaf have a cruelly devastating handicap and are eminently deserving of whatever new help this Bill can achieve. The Government's reaction to the Bill is eagerly awaited by Sense whose enormous efforts to make life better for people with the dual handicap are so widely acclaimed. I pay warm tribute again today to the outstanding service this exemplary charity gives to one of the most needful groups in Britain.
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What concerns all the major disability organisations is that, much apart from stricter implementation of the law, local authorities now seem to be reducing rather than increasing the help they give. The Chronically Sick and Disabled Persons Bill was, as I said at its enactment, about social inclusion for disabled people, not least for severely disabled children and young people. It was about making them a part of instead of apart from society; and it was the warmth of public backing for the Bill and the support it received from both sides of both Houses of Parliament that ensured its enactment.
Not only was the Bill emphatically approved by this House: it was also improved, not least by the unanimous insistence here, to which the noble and learned Lord, Lord Lloyd of Berwick, so perceptively and eloquently alluded, in the case of R. v. Gloucestershire Council, ex parte Michael Barry, that help for disabled people must in future depend not on where they live but strictly on the extent of individual need. That was Parliament's undoubted intention and anyone who thinks otherwise should read the parliamentary record. The misguided decision in the case of R. v. Gloucestershire Council, ex parte Michael Barry still rankles very deeply with all the organisations of and for disabled people.
At no time did party animus impede the Bill's progress. It delights
me now to be able to acknowledge, 30 years on, the humane leadership your
Lordships' House gave at what a French legislator was soon afterwards to
describe as a moment critique for disabled people everywhere. Like the
Chronically Sick and Disabled Persons Bill itself, the Bill we are debating
here today is an all-party measure that is widely supported in all parts
of the House. I hope the debate will, at the very least, secure higher
priority for the compelling claims of those we seek to help.
Baroness Wilkins: My Lords, I congratulate my noble friend Lord Ashley of Stoke on his tireless efforts in bringing forward the Bill and on so clearly highlighting the appalling gap in our community care services. To be deafblind is one of the most isolating conditions in our society, as noble Lords have already eloquently stated. It can deprive one of the basic means of communicating with the people around oneself for any of the essential matters of daily life. Without support, not only does one lose the comfort of casual chat with family, friends and anyone one happens to meet, but one cannot move outside the confines of one's minutely known surroundings or have access to any of the information which is essential to take part in daily life.
But it is only our ignorance and indifference to the particular needs of deafblind people which allow such isolation to continue. With one-to-one support from a guide communicator, deafblind people can have someone to act as their eyes and ears, and those huge problems can be overcome. That is what the Bill would achieve and I urge noble Lords to support it.
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It is estimated that one in 2,500 of the population are significantly deafblind. I conducted a rough survey of the six London boroughs surrounding my own to try to find out the state of current services. The number of people with a severe combined sight and hearing problem in those seven boroughs is approximately 590, yet none of those boroughs has even a specialist worker for the deafblind and none of them was aware of the numbers of deafblind people in their area. That is almost 600 people who have no access to the very services established to help them; no access to support from someone who understands their needs and who can communicate with them.
The response in each case was that the separate workers for the visually or hearing impaired--if such workers existed--would work with their particular impairment. That is totally unacceptable for some of the most vulnerable people in our society who need specialist support. The boroughs knew that that was unacceptable, but need the recognition and distinct duties placed on them by the Bill in order to be able to provide that.
What is required is what set out in the Bill. Deafblind people need access to one-to-one support workers who are trained in the range of communication methods used by deafblind people. Those include hands-on signing, fingerspelling in the deafblind manual alphabet, and Braille, as well as lip-reading and clear speech. Given such support, deafblind people can regain control of their lives and re-enter mainstream society. It will enable them to do all the simple essential things in life, such as shop for food, go to the dentist, keep in touch with friends, and sort the deluge of paper that comes through our letter boxes each day.
It is our ability to do these things which maintains our self-esteem,
keeps us mentally healthy, and saves us from depression and grinding isolation.
To quote one of the deafblind people who are pressing for the Bill:
"I am currently depressed and isolated. I feel the days are long and lonely and I am trapped in my house. Being able to go out and meet people or experience the outside world, I would think there was some reason to go on".
Deafblind UK was set up in 1928 by a tiny group of deafblind people
who came together to offer each other support and understanding in the
face of conditions they found "unjustifiably cruel and hard". Today its
membership testifies to the fact that those conditions have hardly changed--still,
hundreds of deafblind people are living alone, with nobody to help them
to get out safely or to enable them to communicate; even to access the
services which are set up to help them.
By ensuring that local authorities are given the statutory duty to seek out and assess the needs of the deafblind people in their area and, most essentially, to provide them with one-to-one link services, the Deafblind Persons Bill will end this isolation. I urge noble Lords to support it.
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Lord Addington: My Lords, I have found the idea of being deafblind one of the most difficult to comprehend for the simple reason that it sounds like a living hell to be denied the normal forms of access to stimulation. We are told that man as an animal dominates the planet because of his ability to co-operate with his fellows. That is always done through either the visual medium or sound. If those are removed, we are unable socially to interact or to go through the process that is now going on in the Chamber. If there are no other forms of communication to replace them, that which makes people human is removed from them.
We can do something about it by providing people to act as an interface. If we put it in those terms, the subject we are addressing should not be referred to the Department of Health or to the Department of Social Security. It is a basic civil right. When we deal with disability, we often forget that. We find ourselves being pushed off into departments which deal with certain aspects of it. Those in the House who deal with disability find themselves speaking to many different Ministers. But this is an issue of civil rights and enabling people to become part of society. The Bill offers the clearest example of where we should be doing something to enable people to become full human beings.
I have a suspicion that the Minister will us that virtually everything in the Bill is covered by existing legislation and that therefore the Bill is not needed. However, the Bill has not been brought forward merely to flag up an issue. It addresses a real problem. The statistics with regard to people not getting access to this service speak for themselves. The Bill is about enabling people to become proper and full human beings so that they can interact with their fellows. If that is not happening, there is a problem. If the Bill is not properly drafted to achieve that, we should try to do something else in Parliament. The Government should ensure that local authorities address the problem under existing legislation. It is Parliament's job to make sure that there is legal enforcement of Acts of Parliament. If that means an extra piece of paper, let us have an extra piece of paper. That is what we are about today.
After the noble Lord, Lord Ashley, opened the gates on the problem, the noble Lord, Lord Swinfen, started this unanimous and forceful drive towards solving it. There is no real dispute among us. There is a problem here which is not being dealt with. When the Minister replies to the debate, he must tell us how he is going to deal with the matter. He should also let us know whether he needs encouragement and help in order to put pressure on his governmental colleagues. I am quite sure that we in this Chamber will be able to provide it. Is not that the way we have always done this? Every time we want to have something changed we keep on talking about it, and the Government either give and open the door or we push them through it. That is the way things happen. No government are keen to be defeated in this House on such an issue, but
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they frequently are, often because they do not move fast enough for
us and often for very good reasons. But we do have to keep on pushing.
We should welcome the Bill, discuss it fully and make sure that it is the best vehicle possible. We should make sure that we get the answers from the Government and then see what happens. Just passing a piece of legislation is not good enough. It has not worked in the past. I hope that we shall start a process in which we shall be able to achieve results more quickly than has been the case in the many other battles we have had in the general area of disability.
Lord Astor of Hever: My Lords, the noble Lord, Lord Ashley, has set out clearly the purpose of the Bill. We on these Benches support its introduction. Indeed, there has been complete agreement on this point in all corners of the House.
I should like to pay tribute to the noble Lord, Lord Ashley, for introducing the Bill and to the work of Sense and Deafblind UK which have inspired it. All noble Lords have spoken with great authority and experience. My noble friend Lord Swinfen has worked hard for many years and has won a number of battles on behalf of the disabled. I always listen with great interest to the noble Lord, Lord Morris of Manchester, the architect of the 1970 Act. He said that he worked closely and successfully in the other place with my uncle on behalf of the disabled. The noble Baroness, Lady Wilkins, has a background of working with the disabled. I agree with her that deafblindness is one of the most isolating conditions in our society. The noble Lord, Lord Addington, has been his party's spokesman on disability since 1994. I, too, visualise deafblindness as a living hell.
It must be right to rescue the thousands of deafblind people from isolation and exclusion, particularly those who have had severe congenital audio-visual impairment since birth or early childhood. We accept that, without sight or sound, they need one-to-one assistance from skilled helpers. At present, they do not receive that help. The noble Lord, Lord Ashley, mentioned that only one in eight receive adequate support, and many are virtual prisoners in their own homes. The noble Lord also mentioned that current government legislation places no statutory duties on local authorities requiring them to treat deafblind people as a distinct group requiring special provision.
The Disability Discrimination Act requires service providers to make "reasonable adjustments" so that disabled people can be treated on a par with the non-disabled. However, there is a danger that the acute needs of a deafblind person may not be regarded as "reasonable" by the service provider on grounds of cost or inconvenience in providing dedicated and trained assistance in assessing the service. There is also a danger that, faced with the potential threat of court action, a service provider may direct resources to benefit the larger number of disabled people who face
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less acute barriers in assessing the service, but who may be deemed
more likely to undertake court action compared to deafblind people.
The Bill would impose a duty on local authorities to compile a register of deafblind persons in their area. The noble Lord, Lord Ashley, said that most local authorities are ignorant of deafblindness; I agree with him. Perhaps I may ask him: how is a local authority supposed to set about the task of finding deafblind people, and how will it keep the list up to date? I accept that local authorities could cross-reference the blind registers, but I understand that there is no obligation on them to keep a deaf register.
Sense and Deafblind UK state in their briefing that the cost implications are minimal and could be met creatively. The noble Lord, Lord Ashley, mentioned a figure of £10 an hour per person. I should be grateful if the noble Lord would go into a little more detail on that point.
Finally, the Bill does not specify any penalty for local authorities failing to comply with that requirement. What is to stop an authority simply ignoring the Bill?
The Government are aware of the problem. The number of deafblind people
is relatively small in relation to the overall population. Dual sensory
loss can bring devastating social and emotional consequences. I look forward
to hearing the Minister's reply, and I hope that he will bring the House
some good news.
The Parliamentary Under-Secretary of State, Department of Health (Lord Hunt of Kings Heath): My Lords, it is a great pleasure for me to take part in this debate. I warmly congratulate my noble friend on his initiative. He has been a longstanding champion for deaf people in particular and for disabled people in general in this country. He is a doughty fighter and a determined campaigner. He is absolutely right to bring to our attention the needs and challenges facing deafblind people.
The debate has been extremely moving. Every noble Lord who has spoken has brought a wealth of experience and understanding to our deliberations. In saying that, I strongly agree with the noble Lord, Lord Astor of Hever. My noble friend Lady Wilkins spoke movingly of the challenges and difficulties faced by people with a severe degree of combined visual and auditory impairment. It is very hard for any of us who have a full range of senses truly to appreciate the impact of that condition. In an age when it is so easy to communicate with those on the other side of the world, one can only imagine the frustration of not being able to communicate with those on either side of us. The noble Lord, Lord Addington, made that point so well.
Deafblind people often have needs which are quite different from those of people who, while having one impaired sense, are still able to rely on another in compensation for that loss. I strongly agree with my noble friend Lord Ashley that it is important for local
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authorities to identify that group of people, to assess their needs,
and to provide services that address the problems of communication, information
The Government fully recognise that there are shortcomings in the system as it has operated. Not all deafblind people are identified, and we need to look critically at the services which are currently provided for those who are identified.
There are a number of reasons why we believe that this Bill would not lead to the improvements which my noble friend Lord Ashley seeks. To a certain extent, the noble Lords, Lord Swinfen and Lord Addington, have anticipated my response. I accept their challenge to me to show how current shortcomings can be overcome and how the performance of local authorities can be sharpened up. It was a point made by my noble friend Lord Morris of Manchester, who piloted the Chronically Sick and Disabled Persons Act which provided the basis for the enactment of legislation which, in turn, led the way to asserting the rights of disabled people. As he pointed out, it was the first legislation which made specific mention of children born deafblind. I shall return later to the issue of local authority performance. I believe that this is the crucial part of our debate.
I should like now to make some technical comments on the Bill. My noble friend Lord Ashley has described the devastating dual disability of deafblindness. It is very important to be clear exactly which group of people is most vulnerable. I believe that the definition in Clause 5 goes beyond that. The Deafblind Services Liaison Group, which is formed of the RNIB, the RNID, Sense, and Deafblind UK--I join other noble Lords in paying tribute to the tremendous work of those organisations over the years--has defined a person as "deafblind" if he or she has a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility. I believe that that definition, which is used by local authorities and the Social Services Inspectorate, describes the people of whom my noble friend Lord Ashley has spoken and those to whom we need to give our attention.
Clause 1 would include specific mention of deafblind people among those covered by the provisions of Section 29(1) of the National Assistance Act 1948. This is not, however, necessary, as the group of people I have just described already falls within the scope of Section 29 of the Act, in that they are substantially and permanently disabled.
The second clause of the Bill would put local authorities under a duty to inform themselves of the number of deafblind people in their area and to maintain a register of those people. I agree that it is very important for authorities to identify deafblind people, but they already have a duty under Section 1(1) of the Chronically Sick and Disabled Persons Act 1970 to inform themselves of the number of persons in their area to whom Section 29 of the National Assistance Act 1948 applies. As I have said, deafblind people fall within the scope of Section 29.
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Although there is no requirement in primary legislation to maintain registers of people to whom Section 29 applies, in England the Secretary of State for Health has issued a direction to authorities to compile and maintain registers. Guidance has suggested that authorities may find it helpful to have separate sections for certain categories, such as those who are blind, partially sighted, deaf with speech, deaf without speech, and hard of hearing. Indeed, some authorities currently compile registers of those who are deafblind. But it is important to remember that a person does not have to be registered with an authority in order to receive assessment or service provision. Many who are registrable receive services but choose not to be registered. My department estimates that only 25 per cent of those who could register as blind or partially sighted choose to do so, with an even lower percentage of those who are deaf or hard of hearing seeing any advantage in registration.
Clause 3 would require an authority undertaking an assessment to specify the need for deafblind link services, and to require it, in consultation with a deafblind person, to make arrangements to provide those services. We agree that we need to raise awareness of the particular needs of deafblind people and that authorities should consider provision of deafblind link services when preparing care packages, but there is no question about the ability of local authorities to do that now if they so decide. The Government believe that authorities need to retain discretion to decide on an individual basis what service can best be arranged to meet the needs of the disabled people they assess. Having said that, I recognise that that must be linked to the performance of local authorities, and I shall return to that point in a short while.
Clause 4 would specify the provision of deafblind link services in Section 2(1) of the Chronically Sick and Disabled Persons Act 1970. This section currently includes the provision of practical assistance in the home; recreational facilities within or outside the home; meals; telephones with special equipment; the facilitation of travel and the taking of holidays, all of which come within the deafblind link services as defined in the Bill.
It is my understanding that local authorities do not see Section 2(1) as an exhaustive list of services or equipment which may be provided for deafblind people or those with other disabilities; nor would we want them to do so. Authorities are, in fact, encouraged to put together innovative packages of care--as best suited to each individual client.
It is for those reasons that the Government are not able to support the Bill. However, I assure noble Lords that we are not complacent. As I have said already, it is clear that we have to do better. There are a number of initiatives under way which seek in the first place to improve service provision to all disabled people, including those who are deafblind. The long-term care charter, Better care, higher standards, was published in December following discussions with users, carers, front-line staff, professional bodies and statutory organisations. Local authorities will implement the
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charter from the end of June 2000 through local charters that will describe
what people can expect if they need care or support from their local health,
housing or social services over the long term, and what to do if things
The local charters will include standards for access to information and to services, along with targets for improvement. Local charters will be developed with full involvement by users of services with the aim of ensuring that the needs of users are properly understood by service providers and that standards are set for issues which are important to users.
Guidance is currently being developed on fair access to care, setting out the principles that authorities should follow when devising and applying eligibility criteria for social care services for adults. Not only will implementation of this guidance bring about more consistent eligibility criteria within and between local authorities, it will require authorities to review, and to improve their arrangements for reviewing, the needs and services of people in receipt of social care support.
The majority of people with dual sensory impairments are elderly. The National Service Framework for Older People, due to be published in the autumn, aims to improve quality, consistency and fairness in the services provided to older people. The latest National Priorities Guidance, in setting out the priorities for the NHS and social services for the next two years, includes the provision of fast and convenient services and improved care, support and independence for older people.
We have recognised the importance of allowing people to make their own decisions about how their social care should be delivered. Direct payments are giving new freedom and independence to people with disabilities, and have already been taken up by a few of the younger deafblind people, many of whom are choosing to purchase deafblind link services. We shall now expect to see older deafblind people taking advantage of direct payment schemes as direct payments can now be made available to those over 65.
Deafblind people should also be benefiting from new grants aimed at promoting independence. The prevention grant and the partnership grant are very much part of that. The prevention grant of £100 million over three years provides local authorities with the opportunity to develop preventive services aimed at helping people to achieve and to maintain independence including deafblind people.
The partnership grant, which is a special grant of £647 million over three years, provides for additional services as thought fit by local authorities in co-operation with NHS bodies, promoting the independence of adults assessed as needing social care support, respecting their dignity and furthering their social and economic participation. Deafblind link services and other schemes to help deafblind people clearly come within the scope of those grants. These form a number of other general initiatives which should be available to deafblind people.
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Of course, I fully accept that there is a need to focus specifically on the needs of deafblind people. We need first--I am convinced of this, having listened to the debate--to remove, as my noble friend Lord Ashley said, the ignorance of deafblindness among so many authorities. This is an issue which my department has been addressing; for example, through the publication of Think dual sensory, our 1997 guidance on services for older people with dual sensory loss. Last year my honourable friend the Minister for Health, John Hutton, launched a video, Making sense, which is intended to provide senior managers and social services with a better understanding of what services should be available for people with sensory impairment. It includes a section specifically on deafblindness which shows the valuable role which communicator guides can play.
The Department of Health is funding a three-year Deafblind UK project, which is establishing a network of regional deafblind development workers. They will have an extremely important role in assisting local authorities to develop better services for deafblind people. Deafblind UK has also been funded to produce a handbook on deafblindness.
In addition, the department is also providing support for the production of best practice standards being written by Sense and intended to be available later this year to all those providing services to deafblind people.
It is clear that providing guidance is not the end of the process. In answer to my noble friend Lord Morris, we have to monitor the progress local authorities are making in providing services to deafblind people and other groups for whom they are responsible. Noble Lords will know of the more vigorous approach which the Government are taking in assessing the performance of local authorities and their social services departments through developing the performance assessment framework, through the use of performance indicators, through inspection, through joint reviews and in-year monitoring and, more generally, in relation to the beefed-up role of the social services inspectorate.
Although there are no current indicators specifically on deafblindness, we are working to develop the indicator set further and we will shortly be launching a discussion data base on our website to allow all stakeholders, including Deafblind UK and Sense, to register their comments.
These views will be considered by a development group involving the Association of Directors of Social Services, the Local Government Association, the Audit Commission and local authority information managers and fed into the development process in relation to performance indicators. In addition, under best value, local authorities will be required to carry out reviews of all their services over a five-year period. I believe that this will raise the relevance and the importance of services for deafblind people.
The department is also taking some specific measures in relation to services for deafblind people. I shall turn to that in a moment, but perhaps I may now
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respond to a number of points which were put to me during the debate.
The noble Lord, Lord Swinfen, asked whether we would be in breach of the
ECHR. I understand that the current legislative framework provides local
authorities with powers to make available the kind of services he described
and therefore it should not be an issue. However, I shall reflect on that
matter and write to him.
My noble friend Lord Morris suggested that too little has been done to ensure the implementation of Section 25 of the 1970 Act. The Government recognise the importance of meeting the needs of disabled children and families. Our objectives for children's social services set clear the expectations for local authority provision and we are monitoring them through our Quality Protects programme.
My noble friend Lord Morris also raised the issue of the Gloucestershire judgment given by the House of Lords in March 1997. It confirmed that authorities can take their own resources into account in deciding what services to arrange for disabled people under Section 2 of the Chronically Sick and Disabled Persons Act 1970. I understand the concerns that have been expressed about that. In a circular issued in November 1997, the department reminded authorities of their duty under the Act. That made it clear that the Gloucestershire judgment does not give local authorities a licence to make arbitrary decisions on the basis of resources alone. It also emphasises that the judgment does not mean that authorities are not under any duty towards disabled people.
My noble friend Lord Ashley referred to the current working group in relation to the disability living allowance. Following recommendations from the Social Security Select Committee, a working group of the former Disability Forum was set up in July 1998 to consider possible options for change within the scheme. The key aim is that thresholds should be more transparent, leading to easier entitlement decisions with greater consistency which would be easier for disabled people to understand. The working group is working towards a system based on the activities involved in managing life. The case study work on various models has recently concluded and it produced results sufficiently promising to allow further testing, with some adjustments, involving the live assessment of volunteers.
My noble friend also referred to the deafblind working group. Perhaps it would help if I set out the terms of reference for that group. These are to consider the identified barriers that exist for deafblind people in obtaining entitlement to benefits, in particular the disability living allowance; to make proposals that assist in overcoming such barriers; improving service delivery of DLA to the deafblind and training Benefits Agency staff in deafblind awareness. Both of these working groups include representatives of and for disabled people.
My noble friend Baroness Wilkins referred to the six boroughs in which 590 deafblind people had no specialist workers. We acknowledge the need to identify those who require services. For that reason,
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we are about to embark on a consultation with deafblind service users--Deafblind
UK, Sense, local authorities and the Local Government Association. The
aim will be to address a number of specific measures that have been discussed
today in an attempt to better establish the numbers of deafblind people
who require services; to look at ways in which deafblind people are currently
identified by authorities and how those mechanisms might be strengthened;
to look at alternative systems of identification--what works and what works
best; to look at existing systems of registration, whether they work, how
authorities might use them and how we might improve the situation; to look
at the current level of specialist assessment and review carried out by
authorities; and to map existing services.
The expectation is that the results of the consultation will be available, at least in a preliminary sense, by the autumn. In the light of those findings, the Government will then decide how best to move forward in these areas. We will also ensure that the views of those being consulted will inform other ongoing work within the Department of Health, not only the performance assessment framework, to which I have already referred, but also in terms of the wider role of the department over the entire health and social care spectrum.
In conclusion, perhaps I may say that we are all indebted to my noble
friend Lord Ashley for introducing this Bill to the House today. It is
unacceptable that deafblind people should face isolation because they are
not able to access social services. I can assure noble Lords that the Government
are taking action to address this and, as I have outlined, will continue
to work to ensure that all people in need of social services, no matter
what their disability and no matter where they live, will have access to
those services and will be able to live safely and as independently as
Lord Ashley of Stoke: My Lords, it is traditional to thank all those who have taken part in a debate. However, today has proved to be an exceptional occasion. The depth of feeling expressed by all those who have contributed has been most striking and also rewarding. What noble Lords have said will give heart to the people we have been discussing--deafblind people. I found the debate very interesting, and while I want to avoid using the word, "moving", the experience has been far more important than that of a normal debate in terms of discussing such real issues, in particular because so many thousands are neglected, ignored and have been given little or no help. That is why the Bill has been brought forward.
The noble Lord, Lord Astor of Hever, put three questions to me. The first concerned how local authorities could find deafblind people living in their area. This is a difficult problem because deafblind people simply do not make themselves known, owing to the nature of their disability. However, Sense have stated that there are several guidelines and codes of good practice which indicate how to find and
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categorise information that includes deafblind people. I hope that local
authorities will be able to show a degree of imagination. They can use
the press, radio, television and posters. As politicians, we all know how
to get in contact with the public when we want votes. Why cannot we do
that when we are trying to help people? I do not believe that it is beyond
the wit of local authorities to locate every single deafblind person. It
should be possible to identify them. When we were seeking votes in the
House of Commons, we would find "Joe Bloggs" or "Maggie Farnsbarns" and
make sure that they voted on a certain day. Why can we not identify the
people who need help, obtain their names and addresses, send in the information
and act upon it?
I am almost inclined to call the noble Lord, Lord Astor "my noble friend" because, as the noble Lord, Lord Morris, mentioned, his uncle, Lord Astor, and I together founded the All-Party Disablement Group. We were very close friends and worked together--I as chairman and John as secretary--for many years before he died. However, in accordance with the conventions of the House, I must still call him "the noble Lord". The noble Lord, Lord Astor, asked me how those services will be funded. The funding can be made available in many ways. First, when my noble friend Lord Hunt eventually agrees with the Bill, I expect that he will find more funding. He will go to see Gordon Brown and twist his arm.
The noble Lord on the Liberal Democrat Benches mentioned that one can always rely on Members of this House to buttress the cries when one is trying to persuade the Government to find money for disabled people. We shall help my noble friend as much as we can. However, funding can also be made in partnership with voluntary organisations and European money may also be available. Therefore, I am hopeful that that is the best way of dealing with it.
Thirdly, the question of penalties was raised. How to deal with those recalcitrant local authorities presents a real problem. My reaction is to hit them and hit them as hard as possible if they neglect disabled people, and especially if they neglect deafblind people. That is my instinctive reaction and I am sure that it is the right one. People can ask for a judicial review, and that is one way of dealing with the matter. However, my answer to the noble Lord is that I shall consider and take advice on the best means of enforcing the provisions of the Bill.
I turn now to the Minister. My noble friend Lord Hunt is a good speaker. However, for the first part of his response he sounded like a pedantic civil servant,
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explaining why we cannot do this or that, and so on. If everything is
so marvellous, if there are so many provisions on the statute book with
so much detail and if local authorities have so many obligations, why are
so many thousands of deafblind people neglected? Why are local authorities
failing deafblind people? If the legislation exists, what is wrong? Sense
and Deafblind UK have provided the evidence. They have provided a shocking
list of disregard and neglect of people who are in total silence and total
darkness, left virtually as prisoners in their own homes. It is a shocking
tale of neglect. Yet, the Minister tells us that all is fine, or so he
did in the first part of his speech.
I can understand him trying to explain it, but I am afraid that, although he said that the Government are not complacent, they sounded complacent until he came to the second part of his speech. At that point, he began to give me hope. However, it seems that the Government are prepared to rely on the guidance to local authorities. But there are so many foxy, intransigent local authorities. Why should they bother with guidance? The Minister said that there is an Act of Parliament which compels them to do something. But they are ignoring that Act of Parliament. In that case, why should they take any notice of the guidance? Why should they bother with mere guidance from a Minister? They will brush that aside if it costs them money. Therefore, I do not say that we do not want the guidance, but I am saying that it is not enough.
My noble friend then referred to consultation. So he is not complacent; he wants to do something. I accept that in good faith. Consultation with deafblind people and the other organisations which he mentioned will be a very valuable step forward. It is greatly appreciated. If the Minister can persuade the Civil Service, the Government, the various organisations, deafblind people and Sense and Deafblind UK to work together and produce, as he said, a report in the autumn, we shall have made good progress.
That is good. It is more than any previous government have done, and I warmly congratulate my noble friends on that. In the end, we must ensure that something is done. This Bill will not be accepted this week, but I believe that it will eventually be accepted.
I again thank all those who have taken part in the debate and I thank my noble friend the Minister for his limited advance. I hope that this Bill will pass through the various other stages and add to the pressure on the Government. I commend the Bill to the House.
On Question, Bill read a second time, and committed to a Committee of the whole House.
House adjourned at nineteen minutes before five o'clock.