| Previous Section | Back to Table of Contents | Lords Hansard Home Page |
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.
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
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
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
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.
Next Section
Back to Table of Contents
Lords Hansard Home Page