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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,
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
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.
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
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.
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.
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