§ 8.41 p.m.
§ Baroness Cox rose to ask Her Majesty's Government whether they are satisfied that their policy of community care is providing satisfactory care for people suffering from mental handicap and learning disabilities.
The noble Baroness said: My Lords, I am grateful for this opportunity to raise issues concerning the care of people with learning disabilities or mental handicap. I am particularly grateful to all noble Lords who are to 346 contribute to the debate because their concern and expertise will be valued deeply by all who experience the problems we shall be addressing.
I begin by declaring an interest and clarifying my terminology. My interest is that I am a patron of ResCare, an organisation set up and run by families caring for relatives with mental handicap. As regards my terminology, members of ResCare who have intimate experience of these issues prefer the term "mental handicap" to the term "learning disabilities" which they see as trivialising the multiple problems often experienced by their relatives. Therefore, at their request, I use the term "mental handicap" and hope that those who prefer the term "learning disabilities" will understand my terminology.
I wish to address three issues: the principles underlying the policy of community care; the quality of care currently provided for people with mental handicap, especially in what is termed the community; and the need for diversity of residential provision with particular reference to the option of village communities.
I begin by recognising that all was not ideal in the past. The shortcomings of the old long-stay hospitals for the mentally handicapped, however humanely they were run, were graphically exposed by a flood of studies from the 1950s onwards such as Goffman's classic book Asylums. That deluge of criticism led to a swing away from care in hospital type environments to care in the community, usually in small homes in urban or suburban areas.
That policy has been successful for many of the former patients of hospitals for the mentally handicapped. Many have found the opportunity to realise their potential in new ways. Many have enjoyed enhanced independence and the dignity associated with a more normal life within the wider community. I have received hospitality in such homes and rejoiced to see the fulfilment in the lives of their residents. For those people, the policy of community care has been a great success. I am sure that none of us would wish to put back the clock or be stinting in our appreciation of all that has been achieved.
But we should not be having this debate this evening if that were the whole story. The policy of community care has not been so happy for everyone, and it is incumbent on us to take seriously the plight of those who are suffering as a result of current policy. Many mentally handicapped people are not being provided for adequately in the community and many families of mentally handicapped people looking after relatives at home are deeply concerned about what will happen to their loved ones when they can no longer care for them.
The concept of community care implies that there is a community which cares. But the reality is that the community can be a very lonely place. Living in a small, three or four bedroomed house can make the person feel cabined, cribbed and confined compared with the more independent movement possible in the more spacious and sheltered grounds of a larger scale residential community.
347 Moreover, many of the earlier groups of people discharged into the community were those best able to adjust to greater independence. As the more severely and often multiply handicapped are discharged, it is more difficult to cater for the greater complexity of their needs and there is a growing catalogue of tragic cases where the care provided has been so inappropriate that suffering has resulted.
I am not extrapolating from a few isolated examples to build a wholesale attack on community care. But we ignore the failures of policy at our peril or, more important, at the peril of those affected by the policy. The peril is very real. Some residents in community homes have died as a result of inadequate care or inappropriate implementation of the policy of so-called normalisation.
Three examples must suffice. Recently, in a home run by social services in Stockport, a man choked to death on food. He was the third man to die in such a way in Stockport in the past two years. It is reported that the coroner expressed criticism of the policy of having only one carer to look after six mentally handicapped people.
Secondly, a young man had been moved from a campus hospital to a small house. On the basis of freedom and risk taking, he was allowed freedom of movement, despite his known lack of traffic sense. He was killed within three weeks.
Thirdly, people with epilepsy have drowned in the bath in community homes, having been left alone by relatively untrained staff inappropriately trying to encourage normalisation of lifestyle.
The list is growing but the catalogue of concern is not limited to individual cases. A report in August by the Royal College of Psychiatrists reflects those concerns in its claim that there is a crisis in community care for people suffering from mental illness and mental handicap.
Research undertaken by Dr. Lorna Wing of the Medical Research Council documents events over a year during the closure of Darenth Park Hospital. She found that the experience of the move was positive for about one-third of the ex-residents but another third were deemed to have suffered a deterioration in the quality of life. One of her conclusions, widely ignored, was:
For many in this group with moderate or severe learning difficulties, sheltered communities would offer more opportunities for an interesting life than a small house in an ordinary street".
Therefore, it is not surprising that many families with mentally handicapped relatives are acutely anxious about current community care policy and are pleading for the development of a diversity of provision, including residential or village communities, in associated or satellite homes in the community.
It was against that background that last year my noble friend Lord Pearson and I brought out a publication with a foreword by my noble friend Lord Renton entitled Made to Care: The Case for Residential and Village Communities for People with a Mental Handicap. That stimulated the Department of Health to set up inquiries which have resulted in two interim reports—a mainly literature review by Professors Eric Emerson, 348 Chris Cullen and others and a study into the costs of village communities published by the Department of Health with the University of Kent's Personal Social Services Research Unit. Neither study has undermined our case for village communities. However, there is reinforcement of the concern which we have expressed as regards the shortfall of accommodation for people with mental handicaps.
It is estimated that there is a current gap between supply and demand of between 20,000 and 25,000 places. To bridge that gap would require a 40 per cent. increase in accommodation. Those figures do not even begin to take into account increase in demand over the next two decades. Meanwhile the total number of residential places has been substantially reduced as hospital places are closed more quickly than alternatives are created.
Therefore, my first specific question for my noble friend is to ask what the Government are doing to bridge that gap to meet the current needs for accommodation and to anticipate the expansion of demand in the years ahead.
I move very briefly to my third theme; namely, the desirability of diversity of provision with reference to the case for village communities. I welcome the statement by the Department of Health in 1995 which reaffirms that services should take account of:
a variety of factors, including the views of individuals, families and professionals".
That commitment is fine but the reality is often at variance with commitment. The views of individual families are too frequently ignored. The views of professionals too often reflect an entrenched ideology bitterly opposed to the concept of residential or village communities. That opposition too often overrides the desires and requests of those most intimately involved—the families with profoundly handicapped relatives. A book published earlier this year called Bound to Care is an anthology of their experiences. A ResCare survey found that 50 per cent. of families with mentally handicapped relatives want village or residential communities as an option. But despite that, not one local authority has allowed a village community to evolve.
Therefore I ask, will the Government stop the closure of the remaining hospitals and encourage the establishment of village communities as pilot projects? I refer, for example, to a new development on the unsold site of Offerton House in Stockport, where day services are still in place, and to the evolution of the existing St. Ebba's Hospital in Epsom into a village, as wanted by many families.
I conclude by urging the case for village communities. It rests on the evidence of existing communities in the voluntary, independent sector, such as Ravenswood Village, the Camphill communities, and Brookvale in the UK, and comparable communities in the Netherlands. I ask my noble friend specifically if she will please give urgent priority to the development of village communities as one option in the care of mentally handicapped people, and if she will authorise at least some pilot projects on some existing hospital sites before it is too late? Can she reassure all concerned
that the Government will turn their principles into policies, their commitments into reality, and do everything to ensure that there is available the kind of care which is described so vividly and so poignantly in the brief poem by Beryl Drummond, quoted in the book Bound to Care which states:
Build me a world, where I can be free Free to be myself.
Build me a world, where I can be safe Free from exploitation,
Build me a world, where I can work I need my independence,
Build me a world, with specially trained people Who understand my needs,
Build me a world. where I'll feel secure I'm sure I have the right,
Build me a world
Don't force me into yours".
§ 8.51 p.m.
§ Baroness Gould of Potternewton
My Lords, I wish to express my appreciation to the noble Baroness, Lady Cox, for initiating this debate which gives me the opportunity, with the indulgence of the House, to raise the need for community care of a group of people with learning difficulties who fall outside the general criteria. They are not mentally handicapped, nor are they necessarily elderly. I refer to those people who, as a result of a stroke or accidental injury to the brain, are left with damage to the language centre of the brain and who suffer as a consequence from dysphasia. I declare an interest as a vice president of Action for Dysphasic Adults.
It is estimated that there are more than 200,000 people with dysphasia in the UK at any one time. Dysphasia is an invisible and serious disorder of language where the intellect remains intact and the thought processes are normal but the person loses the ability to use language. It can affect many aspects of communication, including speech, writing, reading, memory, gesture, concentration and understanding of the spoken word. It can vary in severity and can change over time.
Dysphasia can isolate the sufferer to a degree almost unimaginable to the rest of us. One sufferer described the experience as being,locked inside my own head".But because of its complexity and the multiplicity of the impairment, it is little understood by doctors, social workers and providers of services in the community.
It should be a joy to return home from hospital, but for a person who is dysphasic that joy can often be short lived as they are confronted with the every-day reality of their limitations, together with reminders of what they have lost. Many experience fear and uncertainty and require instant support and understanding, because for dysphasic people the very tools needed for finding, understanding and using information are damaged. This means that information needs to be brought to the dysphasic person's attention rather than the reverse.
In some cases there is a seamless transition from hospital to home. Social workers and community based services efficiently address the needs of these people, organising claims for benefits, implementing support 350 from therapists and providing household aids and appliances. For others, discharge from hospital can mean the end of any provision, either because none is available in the community or the patient is not informed of the support that may be available. That support varies greatly throughout the country. One has to examine why that might be the case. Sometimes it is a case of a lack of resources; often it is determined by the severity of the impairment; in part it is determined by local policy and, as I said, availability of resources; and in part by the quality and accessibility of information.
While there are case studies that identify good practice—which is as it should be—there are far too many illustrations of people waiting months for any form of therapy, of benefits and entitlements that are never arranged as promised, of complete cessation of services without notice, of social workers not turning up or answering the telephone, and of patronising doctors and officials being rushed and irritated at the dsyphasic person's inability to express himself or herself.
It is true that many non-dsyphasic people experience similar problems with health, social and other services. However, people who have a communication impairment are particularly vulnerable when negotiating provision for their needs. Because of the invisibility of their impairment, its nature and effects are not understood and the vulnerability of those struggling to communicate is not perceived. This often means that they go without community services which would be most useful to them. Equally, if they receive services which are not satisfactory they do not have the ability to object.
Whatever the severity of the impairment, basic support services are essential; first, a GP or social worker who understands the problem. It is also essential to have advice from a welfare rights officer on weaving one's way through the complexities of the benefit system, and a community team of therapists—a physiotherapist, if one is physically impaired, an occupational therapist to develop independence, and a speech and language therapist. Their expert help and guidance is the most crucial factor in aiding recovery.
The isolation, confusion and perceived lack of a future is often accompanied by severe distress and depression, but there is a dire shortage of counsellors. The speech and language therapist may assist, but it is usually the unqualified carer, member of the family or friend who takes on that responsibility. That is far from satisfactory.
All the analysis of need shows that it is not only availability of services within the community which is important to a dysphasic sufferer. There also has to be a greater understanding by those providing the service. Services need to be accessible and must be appropriate and adequate. They must be promptly delivered, reliable and consistent, and relevant to the needs of the individual. When information is given, it should be simple to understand and frequently repeated.
In the light of the particular requirements of a dysphasic sufferer, I ask the Minister whether any studies have been carried out by her department into the 351 needs of this group of people who suffer from such severe learning difficulties, whether any specific advice has been given to health trusts and local authorities and, if so, whether there has been any monitoring of provision. I close with the words of a dysphasic adult who had been let down by his community based healthcare providers and who said,I want to bang their heads together. I want to fight for my therapy".
§ 9 p.m.
§ The Lord Bishop of Newcastle
My Lords, I thank the noble Baroness, Lady Cox, for providing us with an opportunity to discuss this important subject. There will be general agreement among us, and in the country at large, that the achievements of the past 10 years or so have been very considerable and that there can be no going back. Those who know most about work in this field tell of the way in which many people formerly in institutional care have blossomed and thrived. But time presses and I wish to touch on three specific matters.
First, I have the impression that for obvious reasons much of the thrust of community care has been focused on closing down hospitals. As a consequence, those who live with their families have been a low priority. Those who were moved out of hospitals brought with them a dowry. Money saved in the hospitals was made available to make provision in the community. Local authorities, and others responsible, face real difficulty in making full and proper provision for those who have never been in hospital. That group, which includes most of the younger people with learning difficulties, has complex needs. Much will depend on good information and diagnosis at the outset, good planning at the critical age of 13 to 15 years, awareness of their diversity of need, and willingness to help them into whatever training, work or social activities may be appropriate. All who work in this field underline the importance of strong support and respite care for the parents and families of those with learning difficulties who have stayed at home and have been cherished there. In other words, the first point is to draw attention to the needs of those who have never been in institutions.
The second point concerns attitudes in wider society. On the whole, the general public believe that those with learning difficulties should not be kept in hospital. But there is still some reluctance to have them as neighbours, I fancy. The local churches can and do play a part here. They are accustomed to caring for people locally and in the setting of a community. Indeed, in the past three or four years there have been presented to me for Confirmation quite a number of adults who had formerly been in hospital. On release to homes in the locality, they have been welcomed into the congregation of their parish church. They have found their feet there and this has helped their integration into wider society. In general the churches are comfortable working with statutory and voluntary services and agencies. In certain areas there have been initiatives promoted by the churches, welcomed by the local authority, practical steps taken to provide work in churches, and awareness training made available for people in churches. In any 352 case, many congregations are involved with voluntary groups which work in this field and regard it as a proper expression of Christian care.
The third point relates quite simply to money. Probably every participant in this debate will come to this point sooner or later, and the day after Budget day may or may not be the best occasion on which to address it. As I have mentioned, local authorities experience particular difficulties in finding or raising money to meet the continuing needs of those who have never been in hospital. Even for those who have been in hospital there is difficulty in providing long-term funding, for, to put it crudely, the original calculations were based on an assumption of rate of turnover which is not being realised as people now live longer.
I am aware that matters of finance are complex and technical and that one would be well advised not to venture far into this field. But I am advised that there are particular difficulties with some of those in community care who fall between invalidity benefits and incapacity benefits, and who may also fail to qualify for jobseeker's allowance. There are also particular difficulties on occasion with regard to housing benefit. In some cases, the administration of the Registered Homes Act 1984 and the Registered Homes (Amendment) Act 1991 are placing unnecessary financial burdens on caring agencies.
My time is up. We are all, I am sure, immensely grateful to the noble Baroness, Lady Cox, for having raised the subject and for having treated it so sympathetically. That in itself will help to raise its public profile, not least in such a way as to make it easier for its financial requirements to receive the attention which they need.
§ 9.5 p.m.
My Lords, I am no expert on what sort of care is best for those with learning disabilities, but I know something about management and, because my wife takes an interest in a nearby day nursery for children under five with severe learning difficulties, we have for some years been members of a private sector charity, the Westminster Society for People with Learning Difficulties.
Last year the charity appointed a social worker to research over the next five to 10 years the needs of Westminster children with disabilities. The researcher quickly found that that was almost impossible. No common definition of "disability" appeared to exist and thus she could not compile a satisfactory register which would detail each child's ongoing needs.
The Department for Education and Employment is bound by the Education Act 1981 which states that the term "learning difficulties" applies to anyone who cannot access the curriculum for any reason. She also found that taken out of its educational context, and used in conjunction with the word "severe", the phrase "severe learning difficulties" has come to be synonymous with intellectual impairment or learning disabilities.
In health, however, severe medical conditions such as Down's syndrome and cerebral palsy are defined as a disability. Social services, meanwhile, regards the 353 continued use of the old term "mental handicap" as stigmatising those to whom it applies and the term "learning disabilities" is now used. My personal sympathy is with the term used by the noble Baroness, Lady Cox. We have three departments with three different definitions.
The researcher also found that in 1989 a world health survey identified as many as 12 distinct types of disability and reported that 64 per cent. of those children aged 5 to 15 with a disability in fact had two or more of the listed types of disability.
The result is that no one really knows whether all the children in Westminster who should be on the list of those types of disability identified by the WHO are in fact listed. The research worker says that the numbers she was able to identify are well below the UK statistical averages which worried her. In that respect, I suggest that the children of Westminster were not well served by the existence of three separate entities—health, education and social services—all with their own specialist but unstandardised procedures and definitions.
It seems to me that those three major public entities can be regarded as three vertical streams in an overall organisation engaged in support for those with disabilities. All organisations need horizontal links and in my example the failure to make such links, and to agree a common definition of the word "disability", actively damages the very people whom education, health and social services are targeted to help.
am not sure how many people working in this area are aware of the recently launched Green Paper, government.direct. It commits government to improve sharply the horizontal links between departments. The idea is that the citizen shall no longer have to fill in the same form several times, once for each different office visited. Entering the address once electronically, using a very friendly touch screen, will make it available to all departments that need it. Incidentally, names and addresses will be the first information to receive such electronic treatment.
Equally, the Green Paper offers the reverse. The citizen is to be able to get all the information needed electronically from a single source regardless of the number of government departments involved. That source could be a touch screen, web pages on the Internet, or a real live person in video conference to the inquirer from a central helpdesk.
The government Green Paper, government.direct, proposes to set up what are known as integrated data bases. That does not prevent education, health and social services, and private sector charities for that matter, obtaining their own individual records on their own data bases. It does, however, require that the data bases talk to each other and thus organise a single integrated set of information that can be passed to the citizen.
Whereas we talk to each other in a very unstructured fashion, computers can only talk to each other in a way that has everything structured and standardised. So we immediately have a problem. There is nothing currently standardised about the word "disability". Before we can enter an integrated data base the people in those four streams will have to agree a common definition.
354 The UK is not in the van of these changes. Many other countries are well ahead of what this country contemplates in government.direct. They include the USA, Canada, Australia, Singapore and Spain. Moreover, the proposals put forward by our Government merely copy the changes that are ongoing in the private sector. Electronic networking allows companies to re-engineer their business processes by reorganising themselves to service their customers better. When they have done so, they cut their own costs, improve their efficiency and have far happier customers. Does the Minister have any plans to do likewise in respect of service to those with learning disabilities?
§ 9.10 p.m.
§ Lord Desai
My Lords, I shall be brief. I am very grateful to the noble Baroness, Lady Cox, for introducing this subject. When I was for a short period on the Front Bench as a shadow health spokesman, some of these issues arose and I have tried to maintain an interest in them ever since.
There are three points to be made. First, as arose from the noble Baroness's presentation and the remarks of the noble Viscount, Lord Chelmsford, we have a problem of concept. That arises partly as a result of the different climate of thought in the 1950s and 1960s. Then we tried to move away from being too brutal in identifying certain kinds of disability. We have moved on, to the extent that labelling no longer victimises. Labelling is good information. If different kinds of disability are distinct, and require distinct treatments, we should not be afraid to say so.
As the noble Viscount said, some people have multiple disabilities; but there are also mild and severe forms of those disabilities. We have to be bold, and be able to say that there is a range of mildness or severity, and that there can be multiple problems. In our desire to make everything uniform, under a single classification, although we may have the best intentions we are not able to do the best.
I suggest to the Minister, who has a very good record in these matters, that either the Government or some charity should commission a conceptual "think piece" on this very important question. As the noble Baroness, Lady Cox, pointed out, it was Goffman's work that made us reconsider. We need another Goffman now to think the matter through.
Secondly, I quite recognise that money is scarce. When some of these changes were first being set up we were worried about the strain on local resources. I recognise that the Government have spent more year on year in real terms on the national health. I do not want to engage in a battle over that point. Is the problem that we face a problem of money, or a problem of organisation? It could easily be the case that hospitals are being shut not as a result of lack of money but because we are using the wrong criteria. I have always complained about inner-city hospitals having to bear too much cost, but if it is a matter of organisation, then we could perhaps tackle this problem without too much extra money. That also needs to be carefully thought through.
355 Lastly, and this follows from what I said about the concept, I appeal to the noble Baroness, Lady Cox, on diversity of treatment. We are all different. Let me give what may seem like a trivial example. Many people believe there is only one dieting formula. I have always believed there are different dieting formulas because we are all very different. In the same way, I believe that we must respect differences if we are to treat people like human beings and with dignity.
§ 9.15 p.m.
§ Lord Hastings
My Lords, I rise to support the main request of the noble Baroness, Lady Cox, to whom I am immensely grateful for raising this vitally important subject. I must declare and explain my interest in this subject. I am a patron of the Camphill Village Trust, and as a result have visited many of its communities in England, Scotland and Wales, and I have been instrumental in getting a Camphill community started on my property in north Norfolk. My wife has been the chairman of the management committee for its first seven years which have, happily, just been completed.
In addition, I have been involved with another, similar organisation which operates in exactly the same way as Camp Hill but without the Rudolph Steiner philosophy and that is called CARE. The organisation approached me for land on my other property in Northumberland which I could not provide, but a suitable location was found. I was then asked to see if I could raise money for the equipment of that community, which the right reverend Prelate will probably be familiar with at Ponteland in Northumberland.
Such is the demand and such is the interest involved in these communities that a six-figure sum was raised purely locally in under 12 months in Northumberland. A very much larger six-figure sum was raised in Norfolk in under two years, with waiting lists, right from the beginning, in both places which still exist. I created a regional, East-Anglian committee—we did not want to be narrow minded in Norfolk—and I had a lot of patrons, several noble Lords, two of whom sit on the opposite Benches. The two patrons of that community are the right reverend Prelate the Bishop of Norwich and the noble Earl, Lord Ferrers.
That is my introduction and my interest. The case history of my Down's Syndrome son, who is now 28, is relevant to this debate and enables me to make a point which I consider to be of prime importance, and to which I shall turn in due course. He was well educated at the Camphill school near Ringwood, as a result of which he writes legibly when he concentrates. He reads everything, he is always up to date with the latest news, his fund of general knowledge perpetually astonishes strangers who meet him and he enjoys the opera, the ballet, musical comedies, concerts and museums. Being somewhat of an historian, he asked to go to see Napoleon's tomb in Paris and where the kings of France lived; so we went. He asked to see the Van Gogh exhibition in Amsterdam, so we went.
Now I come to the point. The noble Baroness may think—I am sure that her advisers in the department will—that, of course, he ought to be in the community, 356 in one of these lovely little flats or houses in the high street. They could not be more completely wrong and dangerously wrong. If that young man were put into that sort of environment with one or two carers he would not be able to cope, he would not be able to look after himself. Apart from an occasional visit from a social worker and an occasional visit to the local workshop or day centre, he would otherwise be stuck in front of the television and he would deteriorate very rapidly.
As it is, he requires stimulation which he can get from the normal care workers in this village community. There are 20 of the mentally handicapped and 14 care workers. They hope to expand in the near future. He would get that stimulation, the companionship and a wide choice of friendship. He is like anyone else: some people you like and some people you do not. The choice would enable him to expand and develop his personality. He requires the routine and dignity of work. They look after themselves in these family units. They do not have a cook or cleaners as they do in the county council homes. They do their own homework and help in the kitchen, in the laundry, in the bakery, in the woodwork shop, in the weavery, and in the substantial garden, which supports the whole community throughout the year and, in addition, sells produce on a 50-acre farm. There is a choice of work there. In addition, there is a tremendous amount of entertainment among themselves in the evening, particularly drama. I may say that he is a quite outstanding actor. Above all, he requires the affection and security of family life, the family life in which they are living in separate houses and cottages. They are not cut off. They have contact with the outside world, go shopping and go to some function or to see a factory. Visitors come in from the local village to help on various occasions and they go into the village to help with the local bazaar and that kind of thing. They are secure and they have a fulfilled life.
An ordinary assessment without parental consultation in such a case could make the wrong decision. I ask that the social workers should always consult the parents. Some parents are more intelligent than others and some are more sensible than others. They make their judgment. But the parents should be brought in. Thank goodness, I have no complaint at all about Norfolk, where they get the support of the county council, the district council and the social workers.
I ask only for flexibility in the guidance notes and a positive attitude on the part of the Government, not the negative one pursued hitherto. Without flexibility and a positive attitude I do not see how the problem will be solved in the long term.
§ 9.21 p.m.
§ Lord Rix
My Lords, I am delighted that the noble Baroness, Lady Cox, has instigated this debate on community care for people with learning disabilities. She was generous in not objecting to my taking part, though she recognised that as I am chairman of MENCAP we might differ on terminology and on some policy and practice issues. But, as hinted at by the noble Viscount, Lord Chelmsford, terminology should probably be the subject of another debate.
357 We clearly need to think about people still in hospitals and people who are currently living with their families. As regards the hospital based group, the fact that the noble Baroness's original Question mentioned 16,000 patients and we are down now perhaps to not much more than 8,000 says something about the pace of change, though more about the uncertainties regarding the figures. It also illustrates the rather important point that less than 1 per cent. of all people with a learning disability and only about 5 per cent. of the more severely disabled people now live in hospitals. Perhaps I may add that going back 30 years those percentages were about 5 per cent and 40 per cent. respectively. In other words, community care was the norm 30 years ago, although the long-stay mental handicap—or going back further still, mental subnormality—hospital was much more used. Indeed, it was often the only option for hard pressed parents or for when those parents died and the uncaring community had nothing to offer.
I used the term "subnormality hospital" because I believe that it does no harm to recognise that for many parents and for many people with learning disabilities getting as far away as possible from such hospitals and from all that they stood for is their dearest wish. They do not want to see them preserved in any shape or form. The hospitals are not what they were when the series of horrific reports of conditions in them in the 1960s and 1970s damned and doomed them. However, we ought not to give them too much credit for being safe havens or flagships of specialist care, when, in reality, they had and have so many drawbacks as places in which to live and in which to be looked after. I find it hard to believe that if they were not there, there would be any question of using something like them as a model for living in the 21st century.
That is why I argue, alongside the noble Baroness, in favour of many of the outcomes that she and others seek, including proper concern for safety of vulnerable people and proper attention to specialist resources for people with special needs. But I draw different conclusions about hospital site village communities—I stress "hospital site"—as a way of achieving those outcomes. I prefer the precedents set by the way in which most people with severe learning disabilities have always lived: in ordinary settings, with sometimes somewhat spasmodic access to whatever special support they need.
I argue that case with all the more confidence because we are beginning to develop successfully new forms of supported community living away from the family home for the most severely disabled people. Looking back to the past for care models is like breeding better carrier pigeons when we have the possibilities of the Internet.
I recognise entirely the importance of affordability and I shall come back to that issue before I conclude. But the evidence marshalled by the Government seems to indicate that hospital site village communities are not necessarily more readily affordable unless there is compromise on the use of existing buildings to save capital and on staffing to save revenue.
Fortunately, I hear many expressions of goodwill towards community care for people with learning disabilities as I travel around the country. I am saddened 358 therefore that in seeking to save money, and in putting pressure on local authorities to save money, the Government seem to be putting at risk much of what they have helped to achieve. I instance the tightening of eligibility criteria, cut-backs in short-term breaks and day services, the spread of charges for services that were traditionally free, proposals for housing benefit changes which would make housing with support less affordable, and the tragic cut in disability living allowance for people living in NHS community homes or in hospitals.
When the last of the old hospitals closes in a few years' time there will be few tears shed. However, the noble Baroness reminded us that progress is not about closing things; it is about establishing and then maintaining better things. Government need to remember that our main legacy from the past is not a series of 30-acre sites with, sometimes, singularly unpleasant old buildings, but the odd convention of leaving families rather minimally supported for 50 years and calling that community care. That convention too must be demolished and replaced by something better. If we opt for less and continue to put economising before creating, we shall follow the precedent of the Irishman and his much loved donkey. He had just got it used to doing without food when it died.
§ 9.27 p.m.
§ Lord Renton
My Lords, it is always a great pleasure for me to follow the noble Lord, Lord Rix. When I was chairman of MENCAP the best thing I ever did for that organisation was persuade it to appoint him as secretary-general. A year or two before that happened we were extremely worried about the number of people spending the whole of their lives in long-stay hospitals. They varied enormously. Some were only slightly handicapped—for example, Down's syndrome people who were mobile—and others needed constant care and attention and could not even walk.
In 1979, with the help of the new Conservative Government, we started our Homes Foundation scheme to enable any number of between four and eight less severely handicapped people who were mobile to live together in houses with one or two helpers. As my noble friend Lord Hastings said, in his most vivid speech, even some of the less severely handicapped are not at their best in those circumstances. That is something we must face.
I come then to the large numbers of severely handicapped people of all ages, many of whom who are immobile, who could not possibly be housed in that way, even by our Homes Foundation. They need to remain in long-stay hospitals or be fully cared for in village communities. My youngest daughter is such a person. She cannot do anything for herself. She cannot talk, dress or undress, feed herself or walk unless held up. She could not possibly live in the community at large. But for 25 years she has been beautifully cared for at Ravenswood, and there are thousands like her. So village communities or suitable hospitals are vital for their care.
When the noble Lord, Lord Rix, joined us in 1980 we all assumed that only those capable of living in the community at large would be rehoused away from 359 long-stay hospitals. But, alas, thousands of the more seriously handicapped have in recent years been released—often against the wishes of their parents. Their plight is miserable. I am not overstating it when I say that. Some have been put into ordinary houses, like those of our Homes Foundation. Some are being cared for by their families, who are not up to the task. Very few, or not enough, have been found the proper care they need.
That is why my noble friend Lady Cox has done such a valuable service by initiating this debate and why the Government really must reconsider this policy. I hope we shall get a favourable answer from my noble friend. The plight of those people must concern everyone in both Houses of Parliament. Perhaps I may say in passing that there seems to be a vast number of Members of both Houses who are in favour of village communities.
I would like to support most vigorously what has been said by my noble friend in favour of them. I do so not only because of the wonderful way in which my daughter has been cared for but also from my long experience of the problem. Village communities provide not only medical care—continuous medical care: I can speak from experience—therapy and training for those capable of it, but also a friendly communal life for those in their charge. Environmentally, those I have seen are very attractive. It is not an isolated or inward-looking community. Frequent excursions are held into neighbouring towns and villages and local people often come and help with caring, training and entertainment.
Last year, as my noble friend Lady Cox mentioned, she and my noble friend Lord Pearson of Rannoch wrote a most splendid account of Residential and Village Communities for People with a Mental Handicap. In doing so they made a careful analysis of the comparative cost of village communities run by voluntary bodies. They found that they were run more cheaply than those run by public bodies. They also found that it costs less per head to care for people in village communities than it does to care for them in small hostels, like the Homes Foundation houses. It follows from this that the Government should do all they can to help voluntary bodies to start new village communities, like the Camphill Trust which has set such a wonderful example, as the noble Lord, Lord Hastings, modestly mentioned. I know what a lot he has done to help them. There is also RESCARE in the north west of England, which has been doing splendid work in this field. I only wish that MENCAP would now encourage this trend. I realise that something has separated MENCAP and RESCARE in recent years but they are both doing fine work. I hope that they will grow to understand each other better. I say that in all candour.
This year we are celebrating MENCAP's 50th anniversary with big fund raising and wonderful functions. I earnestly hope that MENCAP will also celebrate our half century, as it did in the past, by giving full encouragement in future to village communities.
§ 9.34 p.m.
§ Lord Pearson of Rannoch
My Lords, I start by declaring my interests as the father of a mentally handicapped 16 year-old daughter and as honorary president of RESCARE, the National Society for Mentally Handicapped People in Residential Care. I therefore support everything that my noble friend Lady Cox and my noble friends Lord Renton and Lord Hastings have said about village communities. I join them in asking for genuine choice to be available to the thousands of families who desperately want a place for their relatives in such a community but cannot, for the moment, find one.
My noble friend Lady Cox has asked me to mention in more detail than did my noble friend Lord Renton the comparative costs between village communities, as described in our publication Made to Care of April 1995, and community care. I can do no better than repeat the calculations that we made then, which have not been challenged. It is true that the Department of Health in a recent survey attempted to cast a little doubt on some of our figures but as it mixed up capital with revenue calculations we do not regard its contribution as serious.
I emphasise once again that RESCARE's support for village communities in no way depends on the fact that they are so much cheaper than community care. We are not seeking to hide our relatives in underfunded ghettoes at the far end of Highland glens. But in times of scarce resources, cost is always a factor. And if the best can also be the cheapest, it seems folly not to encourage it.
The capital cost of moving someone from hospital to a specially adapted house in an ordinary street is about £50,000 while a hospital site can be converted to a purpose-built village, complete with health, recreational, educational and other services on site, for around £20,000 per resident.
As to revenue costs, it appears to cost some £75,000 a year to support an individual in the ordinary community while a place in a residential or village community, with all services included, can cost less than £25,000 per year.
To get some idea of the magnitude of savings which village communities might offer over time, we should remember that there are about 154,000 more impaired people in the United Kingdom. Over half their families so far consulted in RESCARE's national survey want village communities for their relatives. Family carers are ageing and starting to die out. The time bomb is therefore ticking and at savings of some £50,000 per person per annum I would have thought that the Government should encourage village communities if they can be convinced that they provide the service which so many loving families want. I am glad to say that the Government have come round, although somewhat slowly, to accept that they should at least be on the list of provision which local authorities are encouraged to support. But the ministerial guidance which went out on 5th July just happened to leave village communities off the list again. The civil servant concerned assured the Minister and my RESCARE colleagues on 11th October that it was just an 361 unfortunate typographical oversight. The Minister in question, my honourable friend Mr. Simon Burns, promised to rectify this unlucky episode but has not yet done so. I therefore ask my noble friend Lady Cumberlege to give him a nudge when she next sees him. If village communities were clearly supported as one option by the Government, that would at least prevent so many local officials from claiming, as they do, that the Government are against them.
Despite their long waiting lists—and they all have them—village communities would still have to swim against the huge wave of political correctitude which threatens to engulf them. My noble friend Lady Cox attempted to analyse the roots of this attitude in Made to Care—and indeed she mentioned the problem again this evening. Put at its simplest, the philosophical pendulum appears to have swung too far against any form of institutionalisation for mentally handicapped people. The policy of community care at any price, emotional or financial, is now being too rigorously pursued by local "professionals", many of whom have no experience of mental handicap in their families. Indeed, I have to accuse the noble Lord, Lord Rix, of just a touch of political correctitude this evening when he suggested that many hospital sites cannot be easily changed into very pleasant village communities. I can but recommend that he reads Made to Care again carefully. If anyone feels that a stigma must always attach to these sites, can they explain how some of them have been sold off with the grounds being used for desirable executive mansions?
In order to get the truth of this political correctitude into perspective perhaps I may conclude with a suggestion for my noble friend the Minister? RESCARE is holding a parliamentary lobby meeting in the Grand Committee Room next Wednesday, 4th December, at 2.30 p.m. Spokesmen for the other parties have agreed to come, but so far we have no acceptance from a Government spokesman. My honourable friend Mr. Burns, the Minister responsible, appears unable to attend. So would my noble friend care to come herself? She would then have the opportunity of listening to some of the thousands of families that RESCARE represents and she could not fail to be deeply impressed by how genuine is their cause and how desperate their concern. I feel sure that such a meeting would do much to remove some of the misunderstandings which still surround village communities and so would do much for many of our least fortunate people.
§ Lord Hastings
My Lords, before the noble Lord sits down, perhaps I may make one point. He said that the Government were against any form of institutionalisation. The whole point of Camphill, CARE and other such organisations is that they are not institutional; they comprise family dwellings where there is family life. There is considerable and complete freedom. People can change and can move to other places if that is what they want to do. I repeat that they are not institutional.
§ Lord Pearson of Rannoch
My Lords, I completely accept what my noble friend says and very much hope that my noble friend on the Front Bench will agree.
§ 9.40 p.m.
§ Lord Addington
My Lords, in this debate we find ourselves treading through a series of minefields. We have heard the argument about definition. I have never come across so many hard-fought battles, whatever the area of disability, as over the forms of words that are used. In the dyslexia world with which I am more familiar, I have found that when it is said, "You are disabled", people say, "No, we are differently abled". I then have to turn round and say to those people, "If you are disabled, the law is on your side; but if you are differently abled, it is not". I suggest that we keep our points of reference to what is accepted by the Government. If we do not like that, that is a debate for another day.
I turn now to those with learning disabilities. I must declare something of an interest in that I am a vice-president of the UK Sports Association, which is a body promoting competitive sport for people in that category. Such people have the same right to enjoy an independent and fulfilling life as anybody else. I think that that point is agreed. The only matter that we are debating is how we can achieve that.
Perhaps I may refer to what the noble Lord, Lord Rix, said. The old institutions—that is perhaps a fair way to describe them—were probably designed originally to contain a social problem. That was probably more the intention behind them than that of providing support for people. We must bear in mind the social history of this. Indeed, the language used originally points that out. We must not say that that was OK, but equally we must be flexible about how we provide the support to enable people to lead fulfilling lives.
The idea behind care in the community works for the vast majority of people, provided—and this is a huge proviso—that there is appropriate support from outside. We are talking about people who have a disability—that is, they are not fully able-bodied and will need support. The support that may be required might be simply somebody to chat to them and to tell them how to do certain things, such as how to fill in forms or where to go to get help. That may be all that is required. However, that support may take the form of major assistance with everyday functions—or it may be a combination of the two.
As has been pointed out time and again in this debate by people who know, when we are talking about disability, we are talking about a basket of problems. Individuals may have various disabilities thrown together. Each individual is an individual case. Whenever we consider a specific area of disability, we must try to look first at the individual. Whenever we use a blanket term, we get it wrong. Care must be tailored to the individual.
Village communities have been referred to. The noble Lord, Lord Hastings, spoke about an institution of which I have heard good things. It is nice to know that somebody else who comes from Norfolk knows that Norfolk is helping out the rest of the eastern counties, but those of us who come from that county may well say, "What else is new?". Communities that work on such a level and enhance individual training are good, 363 but they are not the universal answer. Indeed, I suspect that they are not necessarily the answer—or not the best answer—in the majority of cases. If we can accept that, we are on the way forward. If we take into account the fact that there will never be a universal answer, we have something to go on.
I believe that the thrust of the Government's policy is correct. It is not often that I can stand up and say that. However, the Government must bear in mind that provisions must be properly resourced. To refer back to the concept of the village community, if one is to do it for the simple reason that it is cheaper than something else, one should not trust it. I see shaking heads. I do not seek to convince those on the Back-Benches. I am concerned with those sitting on the Front Benches. If we merely try to provide something that is cheap, we shall not have dealt with any part of the problem. We are doing many things because they are just and require some support, not because they are financially beneficial. If they are financially beneficial—they may well be in many cases—all well and good, but that cannot be the driving force behind the argument. One must bear in mind that this activity is individually based.
I should like to put a specific point to the Minister. I shall understand if she does not have the answer to hand at the moment. Can the Minister bear in mind that one is cutting away the mobility component of the disability allowance if people go into institutions or sheltered communities of whatever nature for any period of time. For instance, disability allowance, which is paid at two rates, can be stopped altogether if an adult goes into an NHS hospital or into residential care for four weeks. Surely, that is wrong, for the simple reason that the allowance often provides funding for parents to visit children who live away from home. This is very important. One is taking away individual choice or the support of an individual by his or her parents who are a low income family. These problems are felt most keenly by low income families. There is no problem that cannot be helped by extra funding.
I conclude by reiterating that in this situation individual dignity must be considered first and foremost. One must not get bogged down by names of institutions or forms of help.
§ 9.47 p.m.
§ Baroness Hayman
My Lords, this has been an extremely interesting and well informed debate. I express my gratitude, as other noble Lords have done, to the noble Baroness, Lady Cox, for giving us the opportunity to discuss these important issues in the House tonight. I am sure that that appreciation will not be confined to this House but will be shared by many thousands of people outside it whose lives are deeply affected by the policies that society implements in regard to mentally handicapped and learning-disabled people and their families. These are crucial issues. The level and nature of support can make all the difference to the lives of these individuals.
One doctor to whom I spoke about the subject being discussed this evening told me that services for the mentally handicapped was one of those areas that was 364 always called a priority but never treated as one. Noble Lords have made speeches of great thoughtfulness and commitment, and many are based on years of personal experience. I do not have a great number of years of personal experience, but I can share with your Lordships the fact that I met my husband 25 years ago at a time when I worked for the social services department of Camden Council. My director sent me to liaise with the Camden Society for Mentally Handicapped Children (as it was then called). My husband was the secretary of that society. It was perhaps an early example of the value of good inter-agency relationships.
In thinking about tonight's debate I was struck by the fact that many of the issues which exercised that group a quarter of a century ago were just as pertinent to families and voluntary organisations in the field today. Perhaps foremost was parents' fear as to what would happen to the children who were living with them at the time as they, the parents, grew older and incapable of looking after them themselves. There was a need for a variety of agencies to work constructively together across barriers—across the barriers between the health service and local authority services; across the barriers of voluntary organisations, housing associations, families, and different agencies—if we were to create the right package of support for individuals. There was a need for stimulating and appropriate day care services for people with mental handicap, wherever they were living, and in whatever circumstances they were living, whether in an institution or at home.
Even then there was a recognition of the enormous value of respite services for people who were caring for a mentally handicapped member of the family at home. The irony was that the people for whom it was most difficult to find a respite case were often those who were most challenging and whose families were in most need of such support and help.
It has become clear during the debate that we are talking about a disparate group of people. That may be one of the reasons why we have such difficulty in finding the right terminology and definitions. My noble friend Lord Desai delved in at that point. My noble friend Lady Gould talked about another group of whom we do not normally think in this context. The noble Lord, Lord Renton, mentioned it as well. We are talking about a wide variety of people. Some of them at the end of the scale are people with a minor disability who need appropriate support from an education authority to live with their families and then to live independently. Others have complex medical and social needs as well as a mental handicap. They will require skilled multi-professional care in a residential setting all their lives.
Even within those groups, with similar levels of disability, there will be different preferences as to the style of life those individuals want. We should recognise the preferences of those individuals and families by providing a range of provision, as we would for any other group in society. That, in that non-doctrinaire and non-ideological way, is how we should approach the issue of the village community, so that we do not rule anything in or anything out, but look at choice, quality and outcome in what we are offering.
365 We should look urgently at the range of real and valuable options. The right reverend Prelate the Bishop of Newcastle referred to the needs of those living with their families. A recent report estimated that 40 per cent. of mentally handicapped people are living with carers who are over 60 years of age. We shall face an increased demand. We must have a range of services which are appropriate and give a proper choice to people in those circumstances.
Finally, I should like to raise an important issue with the Minister: it is the system for inspections and regulation of domiciliary care services. Since the advent of community care, we have had a wide variety of people who would in the past have lived in NHS hospitals and who are now living in a variety of different residential settings. I agree with the noble Lord, Lord Rix, that we should not be using rose-coloured glasses when we think about what happened in those institutional settings in the past. I have no brief to argue for many of them—for the elderly, the mentally ill, the mentally handicapped or physically disabled. Our system of regulation and inspection has not kept pace with the change in provision. We are talking about vulnerable people who are entitled to proper regulation and inspection. I should be grateful if the Minister would tell us whether there is any chance of an urgent and through review of the arrangements for such inspections.
§ 9.55 p.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege)
My Lords, I too thank my noble friend Lady Cox for initiating the debate. I know of her commitment, compassion and action in meeting the needs of vulnerable people, not only in this country but world-wide. But for the purposes of tonight's debate in which your Lordships have been focusing on a very particular group—those people with a mental handicap or learning disabilities—I am at one not only with my noble friend but all of your Lordships, in a determination that the NHS and social services should provide well co-ordinated health and social services. In this spectrum, I should also like to include the contribution made by non-governmental organisations as partners in care. Increasingly, they are not only involved in shaping the community care plan, but, more than ever, in winning contracts for services.
As my noble friend and the right reverend Prelate the Bishop of Newcastle so eloquently said, today many people with learning disabilities who might once have been shut away in old long-stay institutions enjoy a far better quality of life, undreamt of in the past either by them or their families. A range of living, work, and leisure opportunities are open to them, as never before. Our policy is to ensure that individual needs are respected and that both users and carers have a say in assessments and in the services provided.
I am grateful to the noble Lord, Lord Rix, for setting community care in its historical context and for reminding us of some of the disadvantages of the long-stay institutions. One only has to read the book by 366 Virginia Beardshaw, Conscientious Objectors, and see in the appendix the horrific list of inquiries in order to be left in no doubt on the matter.
We share the view of my noble friend Lady Cox that not everyone can live successfully in a small house or flat, for some people will need intensive support. It is precisely because people with learning disabilities have such a variety of needs, as mentioned so clearly tonight by many noble Lords, that we wish, through local agencies, to provide what the noble Lords, Lord Desai and Lord Addington advocate; namely, a wide range of services. Our guidance recognises that people with severe or profound learning disabilities and physical, sensory or psychiatric conditions are likely to need long-term residential care at some stage in their lives and that for some this should be provided by the National Health Service.
My noble friend Lady Cox asked about research. It has shown that the majority of people with a mental handicap living in the community have benefited from community care. However, it is important that authorities ensure that people's needs are properly assessed and that authorities also ensure that the type of home and the skills of the staff are appropriate.
Together with the noble Baroness, Lady Hayman, we also recognise the importance of respite care or short-term breaks for the health and well-being of both users and carers. We are setting up a project to look at good practice in this area from the user/carer perspective, and I am pleased that MENCAP is represented on the steering group.
Day services are also essential and they are growing. The number of places in a sample week in 1995 was 284,000, which is 20 per cent. higher than in 1992. We have also given Section 64 grants to organisations which wish to improve day and leisure opportunities.
Looking more generally at the health needs of people with learning disabilities and the skills required, we have set up a series of workshops, the results of which will lead to the publication of good practice guidance.
My noble friend Lady Cox was concerned about the overall number of NHS and residential care places and may believe that they have reduced. That perception is not correct because it assumes, for instance, that everyone who lived in the old mental handicap hospitals needed some form of residential provision. There will also be people living in their own homes in the community with some support from the services. But the home does not need to be registered and therefore does not show up in our statistics.
The number of places in registered voluntary, private and local authority homes has increased by more than 80 per cent. in the past 10 years. Recent research has shown that there is also considerable variety in that provision. As the right reverend Prelate highlighted, more places will be needed. It is important that authorities, having assessed the needs of people in their area, work with the independent sector and housing authorities to develop solutions which make the best use of resources. It is also important that they work with TECs and other employment and training agencies to provide employment opportunities for people.
367 To help authorities to commission services which both meet the individual needs of people with learning disabilities and make good and efficient use of resources, as my noble friend Lady Cox has stated, in late 1995 the department set up an independent evaluation of the cost and outcomes of various types of residential provision, including village communities. The first phase of the project reviewed existing research and analysed the costs of various types of provision, including the costs quoted in the RESCARE document Made to Care, referred to by my noble friend Lord Pearson. The results were published in July 1996 and circulated widely. But further work needs to be done on cost, quality and outcomes in order to provide authorities with robust and reliable data to help them in commissioning appropriate services. We are keen to ensure that these results in the second phase of the research are available as soon as possible.
§ Lord Pearson of Rannoch
My Lords, can my noble friend say whether there is any truth in the rumour that "as soon as possible" on this occasion may be as long as three years? If so, is that not a long time? Would not three months be more suitable?
§ Baroness Cumberlege
My Lords, we recognise that research does take some time. Our estimation is two to three years to complete the second phase. My noble friend will know that we are asking Professor Emerson, who is a well-known and respected researcher, to continue with the research. That is important. We hope the research will start in January and, because he undertook the first part of the research, he will be able to hit the ground running and therefore complete the second phase as quickly as possible.
I would now like to address some of the points raised by RESCARE. I understand the reasons why it feels a moratorium on the closure of the old long-stay hospitals should be initiated until the results of the evaluation are available. We do not believe that to be really necessary. There is nothing in our current guidance to stop authorities developing village communities if they consider this is the best way of meeting the needs and wishes of people with learning disabilities.
Ministers have said on a number of occasions that authorities should not rule out options for purely idealistic reasons. The Direction on Choice and NHS and local authority complaints procedures are there to help individuals unhappy about decisions affecting their care. If there is any evidence that an authority has adopted a policy which refuses as a matter of principle to place people with learning disabilities in village communities my honourable friend Simon Burns will take it up with the authority concerned.
My noble friend Lord Pearson suggested that there is a lack of genuine choice for people with learning disabilities. We have made it very clear to all authorities that village communities are an option to be considered in planning services. My honourable friend Simon Burns will be writing to them again shortly about the second phase of the evaluation and will take the opportunity to clarify the department's policy then.
368 My noble friend asked how we were to bridge the gap for the future, as did the right reverend Prelate. The Government have committed considerable resources to community care—£5.7 billion in 1996-97. We meet regularly with the local authority associations to discuss matters of concern with them, including resources. Our guidance recognises that the nature of the client group is changing and people with learning disabilities are also living longer. Personal social services gross expenditure on this group in 1994 was £959.2 million, an increase of 25 per cent. in real terms since 1991. Authorities need to ensure that they manage resources carefully and work closely with health and other agencies in order to make the best possible use of what is available.
The noble Baroness, Lady Gould, movingly and, I thought, with great insight highlighted the problems faced by patients and families who have suffered a stroke. I assure her that the department has access to considerable research in that area and if it would be helpful to the noble Baroness, I shall write to her with references.
The department's continuing care guidance includes the needs of people who have suffered disablement from a stroke and the department has carried out considerable and detailed work to monitor the general implementation of the community care guidance.
My noble friend Lord Chelmsford raised issues in relation to different definitions of disability and different registers and, by implication, different approaches. The department has encouraged health and local authorities to work together on those issues. Local authorities have particular responsibility to agree overall community care plans with their health partners and there is evidence of an increasing sharing of information including that relating to registers. But we are not sanguine and we recognise that there is still much work to be done.
I am very grateful to my noble friend Lord Hastings for his contribution. I assure him that we support his plea for flexibility. We have made it very clear on numerous occasions that it is open to authorities to develop village communities and, as the noble Lord, Lord Desai, advocates, a range of provision. We are prepared also to consider evaluating the development of a village community if an authority decides to provide one but we are not prepared to distort local priorities.
My noble friends Lord Pearson and Lord Renton asked to have the policy reviewed, especially in relation to severely handicapped individuals. We seek the same outcomes of flexibility and security for them. We agree that in relation to some individuals, village type communities may offer the best provision to meet their needs. However, other such individuals may find that their needs are best met by other types of care.
The noble Lords, Lord Rix and Lord Addington, raised issues concerning the disability living allowance. The changes to payments of the mobility component of the disability living allowance brings them into line with arrangements for payment of the DLA care component to people in hospital. Current long-stay patients have been provided with some protection.
369 In conclusion, I know from personal experience what a long way we have come in terms of recognising the potential of people with learning disabilities and their contribution which can so enrich the lives of others. But I know also of the demands which they make on families, friends and carers. Community care is not a soft option; neither is it, nor should it be, a cheap option. But it is a strategy which tries to recognise the individuality and dignity of some of the most vulnerable people in society.
§ Lord Hastings
My Lords, before my noble friend sits down, will she say something about consultation with parents, which was something that I mentioned? The social worker in Norfolk actually contacted us and asked to see us before she made her assessment. But I understand that one of the major complaints of the members of RESCARE, of which I am not a member, 370 is that the parents are not always or even often not consulted. Is there anything in the Government guidelines about that?
§ Baroness Cumberlege
My Lords, my noble friend makes a very valid point. It was because of our concern about that issue that we supported the Carers (Recognition and Services) Act which came into force on 1st April of this year and guidance was issued in February of this year.
I am not quite sure of the timescale to which my noble friend refers and whether the Act was introduced after his friend and he were not consulted, but certainly now we have a legitimate and legislative base for challenging that.
House adjourned at ten minutes past ten o'clock.