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9.5 p.m.
Viscount Chelmsford: 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
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.
I 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.
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.
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,
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.
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