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5 Mar 2009 : Column 335WH—continued

When somebody is in the care of a local council, the situation can be even more complex. When some councils have realised that people with learning disabilities in their care are going to have relationships, they have
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done what they regard as the right thing, and it probably is the right thing: they have done risk-management assessments, bringing in psychologists to gauge the individual’s ability to give informed consent and educationists to discuss contraception. However, in doing that, and in taking that caring attitude towards the person with learning disabilities, have those councils restricted that individual’s human rights?

Let us face it, some Members of Parliament make unfortunate sexual choices, and no one does a risk assessment on us before we get involved in relationships. Perhaps there are one or two examples where people should have done a risk assessment, but it does not happen. We are allowed to engage in relationships at our will, whether they are harmful or not, and no one ever questions our absolute right to do that. Are we therefore breaching people’s human rights by doing a risk assessment and bringing in all the resources that I mentioned?

I do not have the answer to those complex ethical questions. However, I do know that people with a learning disability—complex or moderate—are as entitled to a fulfilled life as anybody else. We have to find a way of navigating through this moral maze. If we can unravel one of the strands by looking at the human rights issues and implications, that is good, but, as I said, many more strands need to be unravelled.

Another example of the complexities that sometimes overcome us is the closure of long-stay hospitals. If there was ever an example of people with learning disabilities having their human rights infringed, it is the fact many people with learning disabilities were effectively locked away in long-stay hospitals over many years. The Government had a commitment to close all those hospitals, and we often criticised Ministers because it was taking so long to do so.

To some extent, that was the fault of local health services, which were not addressing the issue quickly enough. However, it was often also down to the parents and friends of the person with the learning disability. They believed that that person was secure in the hospital environment, and they did not accept the possibility that he or she could have any sort of independent life. The move away from long-stay hospitals was a bit like the move into care in the community, and it had the same sort of reputation. People therefore asked whether those with learning disabilities would get the resources and the support that they needed in the community.

Often, therefore, the barrier to helping people to create an independent life was the people who most loved and cared for them and who wanted the best for them, rather than the Government or the local health services. Who is to say that those people were wrong in that assessment?

Sir Nicholas Winterton (Macclesfield) (Con): I am following the hon. Gentleman’s remarks carefully. He is dealing with extremely sensitive issues, and I respect very much the way in which he has put his case. However, I hope that he has had time to read a Select Committee report of some years ago, which dealt with adult mental and physical handicap and looked at the closure of long-stay hospitals. I was a member of that Committee, and we visited many people who had been discharged into the community. The hon. Gentleman might be surprised to hear that quite a number of them complained
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that they had not been consulted before they were discharged. One man in Norwich, who was quite elderly, said that he had never been so lonely in his life and that he wished that he had never been discharged. Should we not provide facilities for all, whatever their needs, rather than saying that long-stay hospitals are no good and that everyone should be in the community? Is it not right that those people should be consulted?

Dr. Ladyman: The hon. Gentleman is absolutely right, and he is making the point for me somewhat better than I was making it myself. What I am saying is that, if we take a human rights approach and assume that all long-stay hospitals must be closed, we perhaps overlook the fact that some people feel very comfortable in that environment and object to our taking such a paternalistic attitude. It will take a lot of work to convince them that it is necessary to close all the long-stay hospitals, if that is what we are going to do.

I have a good example of that. I am one of the Minister’s predecessors. I was a great campaigner for the view that older people did not want to be in care homes, and I never met an older person who wanted to be in one until I went to a fabulous new facility in extra-care accommodation—as the Minister knows, I am also a big campaigner for extra-care accommodation. The people there all had their own flats, but there were also some communal facilities, and I was going around everyone with my preconception that they were all happy to be in independent living accommodation. Indeed, they all told me how great it was—except for one man, who was sitting in the corner, so I sat down and chatted to him. I asked, “Do you enjoy it here?” He said, “No,” and I asked him why not. He said, “I’m lonely,” so I asked why. He said, “I made some mistakes in my life and I spent a large part of my time in prison. I’m not comfortable living independently any more. I want to be in an environment where I don’t have independence.” So it struck home to me that we must start not with our own ethical standpoint but by asking individuals how best to organise their lives. That is how we get closest to respecting their human rights—by giving them the dignity that they get from being properly consulted in that decision.

Mr. Stephen O'Brien (Eddisbury) (Con): I was not going to intervene, but I was not planning to raise this matter when I make a speech. I do not know whether the hon. Gentleman has had the opportunity to ask the Chairman of the Committee whether during the inquiry he contemplated investigating the interrelationship between choice and rights. The hon. Gentleman ably highlighted the difficulty: does having a right necessarily invoke a choice? At what point is it appropriate for the risk and opportunity to be transferred from an individual, in the relevant circumstances, to something that the state must make available and provide through society’s methods? If the hon. Gentleman has not had the opportunity to discuss the matter with his hon. Friend, perhaps he would join me in urging him to investigate that as a supplementary inquiry to the original one.

Dr. Ladyman: The hon. Gentleman is right; that would make an excellent inquiry for the Committee in future. His intervention brings me nicely to my next point: if I had a criticism of the report—which is
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excellent, and provides an excellent basis for debate of the issues—it would be that I am not sure the complexities of the debate, in relation to allowing people to express their choice, have been entirely understood. I do not think that the report necessarily gives the Government enough credit, either, for the way in which they have pushed the agenda forward. We can all say that things should have happened more quickly, and that the Government should have done things more forcefully, but we all make mistakes. Perhaps I may tease my hon. Friend the Member for Hendon: his Committee produced an easy-read version of the report; he received witness evidence that the easy-read version should be printed on yellow paper—but it is printed on white paper. Perhaps there were complex publishing reasons for that, but the fact is it should have been on yellow paper.

Mr. Dismore: I am speaking from memory, because I do not have a copy of the first print with me, but I think that that was on yellow paper. If someone has downloaded it, it was probably on white paper; it depends on what paper is put in the printer. I am pretty sure the original version was on yellow. We also produced it in DVD format, so people could do what they liked with it.

Dr. Ladyman: Perhaps that was the case, and it was originally on yellow paper. If so, the Government’s response would not work, because they published their responses on yellow and the Committee’s questions on white, so the differentiation between the two does not work.

A more serious point is that the Committee published the report in easy-read format, but my hon. Friend and his Committee have published many other reports of interest to people with learning disabilities, and this is the only one that I have seen in easy-read format. Thankfully, people with learning disabilities are now living to a grand old age, and are interested in the issues of aging, on which my hon. Friend’s Committee has produced a report which, however, is not in easy-read format. They live in the same world as the rest of us, and are subject to terrorism, but the Committee’s reports on the subject are not in easy-read format.

Mr. Dismore: The short answer is that we do not have the money in the Select Committee budget to do that. That is exactly the point that I raised in a question to the Leader of the House today: we should be doing more of that in relation to everything that is of relevance to people with learning disabilities. I also made one or two points about other disability issues, such as the need for sign language interpreters for people who are hard of hearing. My hon. Friend is making a valid point, and if we had the money we would do what he suggests.

Dr. Ladyman: That is exactly the point that I was making. I have criticisms to make of the Government as well, because when I was a Minister, I made an announcement that Government documents would all be produced in easy-read format. Very quickly, and without anyone saying so, things changed so that health documents would be produced in easy-read format; and then it was health documents pertaining to learning disabilities. The very least that we should aspire to, in my view, is that every Green Paper and White Paper should be produced in easy-read format. That is the
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least that people with a learning disability are entitled to expect. One of their fundamental rights is to be able to be involved in the democratic process with the rest of us.

I am, however, quibbling with my hon. Friend the Member for Hendon, because the report is excellent. Nevertheless, we need to recognise the practicalities of addressing some of the issues raised in it. I am four-square behind my hon. Friend, for example, in recognising the fact people with learning disabilities do not have the access to health care that they should. We have tried to ensure that people with a learning disability are entitled to an annual health check. Quite often they do not report their health problems or seek access to their GP or health services. If we could be more proactive about spotting their health problems we could deal with that. One difficulty—which goes back to the point made by the hon. Member for Eddisbury (Mr. O’Brien)—is that many people with learning disabilities do not want to be recognised in their doctor’s records as having a learning disability; so how is the poor old doctor meant to contact them once a year to invite them to their annual health check? There are complex issues involved in dealing with that, and a measure of positive discrimination is required to get people with learning disabilities into their GPs’ surgeries.

Another matter about which I am passionate is independent living and the efforts we need to make to get as many people as we can into independent living. I am an adviser to the Learning Disability Coalition, as is the hon. Member for Buckingham (John Bercow), who is engaged elsewhere in the House this afternoon; otherwise he would have attended this debate. The coalition is a group of campaigning organisations trying to make sure that we put the right resources and support behind learning-disabled people, and I brought a delegation to meet the Minister earlier this week. In the delegation was a young lady called Victoria Willson. She is 38 years old, and was there with her mum, Jean Willson. Victoria has complex multiple disabilities; she is severely learning disabled, and needs 24-hour care, seven days a week. For a big chunk of the day, she needs two people to support her, to keep her safe. The rest of the time, she needs one person. Even at night, when she is asleep, she shares a carer with another disabled person, who lives in the same place as her. It is a complex level of support.

Victoria is a trailblazer for independent living for people with a learning disability, because her mum and family put the package of care together before it became part of the Government’s agenda, and had to fight to get it in place. They shared with us the cost of providing support at that level. It costs £3,463.17 a week. Social services pay 42 per cent. of that, the health service pays 37 per cent., the independent living fund pays 20 per cent. and Victoria herself contributes 1 per cent. from her resources and benefits. It is very expensive, but it means that effectively she is living independently. If her parents passed away she could continue the life that she lives. She has, at the age of 38, been living successfully in that environment for a long time.

When I was a Health Minister, I visited Wigan, which has a great record on promoting independent living, where I met a gentleman with complex learning disabilities who was living in residential care. To help him express his needs, the people working with him helped him to produce a life map—a pictorial map of how he saw himself and the world around him, and what he wanted
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his world to be in future. What did he identify in his life map? A little flat that he could live in by himself, and a girlfriend. Those were the things he wanted in his life. They set about using a personal budget to help him to achieve those things, and he now lives in the flat. I do not know whether he managed to get the girlfriend—that is not within the remit of the local social services—but he is now living an independent life. If people whose needs are that complex can live independent lives with the right levels of support, anyone can. Having said that, the barriers to living such independent lives are often the people who love the individual most—parents who do not think their children can be safe living independent lives. A huge effort is needed to make those things happen.

Sir Nicholas Winterton: The hon. Gentleman is speaking with great sensitivity and, in many ways, nobody can disagree with him, but I am going to ask him the hard question. He just mentioned the amount that one individual lady cost in a week, of which she paid only 1 per cent. through, I suppose, some form of benefit. Where will the money come from to provide the quality of individual care that enables people to live independent lives, bearing in mind the massive cost and the huge pressure on social services departments and others that provide assistance for people with learning difficulties? I share many of his aspirations, but we have to come down to earth. Where will the money come from to make those facilities available?

Dr. Ladyman: The hon. Gentleman has cut to the heart of the matter, but I hope he will forgive me for not responding directly to his question. I intend answer it later in my remarks.

Access to jobs and work is often unfairly denied to people with learning disabilities. The point was made earlier that we could do more to help in Parliament, and we could certainly do more in government. When I was Minister, I asked the Department of Health to review the options for employing people with learning disabilities, and it identified a couple of posts. My hon. Friend the Minister might like to check whether learning disabled people still hold those posts. We need to be positive. Learning disabled people are also denied access to educational opportunities.

A very important section of the report is about the court services and law and order. Hon. Members will know that I have campaigned for a long time on behalf of autistic people, who suffer very badly when it comes to legal services. Policemen often do not recognise the needs of autistic people or people with learning disabilities, and the courts often are not geared up to help them. I recommend that my hon. Friend the Member for Hendon examines the Maryland curriculum from the United States. The state governor had an autistic grandson who got into some trouble with the law and realised that the police in the state did not have the necessary experience and training. He insisted that they went through a new training programme—the Maryland curriculum—and all law officers in the state are thoroughly trained to recognise the needs of autistic people. The curriculum would have to be adapted for use in this country, but as well as being adapted to help law officers when they deal with autistic people, it could be used to train them to recognise the needs of people with learning disabilities. I encourage my hon. Friend to look at whether the curriculum can be used.


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James Duddridge: The hon. Gentleman mentioned autism. The Autism Bill, which the House agreed to send to Public Bill Committee last Friday, will give a statutory responsibility to local councils to make an assessment of the number of people with autism in their area and provide services within their community. Is there a broader need to assess the number of people with learning disabilities within an area? I am a trustee of an organisation that tries to engage people with learning disabilities. Even with all the stakeholders contributing information, it is difficult to connect with that broad community. My gut feeling is that local authorities do not know how many learning disabled people there are in their area.

Dr. Ladyman: The hon. Gentleman is absolutely right. Modesty forbids me from encouraging him to read my speech in last Friday’s debate on the Autism Bill, but that is why I suggested the Bill ought not to pass into law. In a way, it would discriminate against other people with disabilities, whose needs we do not understand either. We need to find out how many people there are with a range of disabilities and start providing the resources for them. That is a campaigning theme of the Learning Disability Coalition, which I advise. It is desperately keen for proper surveys of the number of people with learning disabilities and the complexity of their needs. It is trying to raise funds for an academic study, and perhaps my hon. Friend could put his hand in his ministerial pocket and help. Certainly, we need such a survey if we are to resource provisions properly.

Mr. Dismore: I am grateful to my hon. Friend for referring to the debate on the Autism Bill last Friday. I did not manage to make my speech—I hasten to add that I intended to speak only for 10 or 15 minutes. The Bill has a human rights context and a lot of the issues that it seeks to address are similar to those we found in the inquiry. That point was not made in last Friday’s debate, but I have been able to make it much more briefly now.

Dr. Ladyman: My hon. Friend is absolutely right that the Bill and the report have many things in common.

Mr. Letwin: Before the hon. Gentleman moves on, I want to press him on a question that relates to what my hon. Friend the Member for Macclesfield (Sir Nicholas Winterton) said a moment or two ago. The hon. Gentleman is talking about interaction with the criminal justice system. Does he agree that, in some cases, making reasonable adjustments might actually lead to vast savings of public expenditure? That contrasts sharply with the situation that he and my hon. Friend were discussing, in which reasonable adjustments involve vast expenditure to support people in independent living. If we were to start with the cases in which there would be vast savings, we could use them to support cases in which there would be greater expenses.

Dr. Ladyman: The right hon. Gentleman is absolutely right, and the prison service, which he mentioned earlier, is a good example. If we did not put people with learning disabilities, autism or Asperger’s syndrome in prison, where they ought not to be, we would free up a lot more prison space for people who ought to be there. People with learning disabilities and autism spend far too long in prison, because they do not understand how
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to play the parole system. When the parole board asks them whether they would do the same thing in the same circumstances, they often answer honestly, and say that they might do the same thing again, instead of saying, “No Guv, I’ve learnt my lesson. I’m going to go out of here and wipe my slate clean.” They do not know how to play the game, and so spend too long in prison. There are big savings to be made on prisons, and if we could be more proactive about looking after the health of people with learning disabilities, the NHS would save a lot of money.

To address the question about resources asked by the hon. Member for Macclesfield (Sir Nicholas Winterton), one quickly comes to realise that, in many cases, the cost of keeping a person living independently is not much different from the cost of keeping them in residential care. It is true that the young lady I mentioned has a very expensive package of support, but we must compare that with the substantial costs of the package of support if she lived in some form of residential care. She would still need the same level of intensive of care, so we must consider the difference between the two.

My hon. Friend the Minister is busy trying to write the new Green Paper on adult social care, and I made that point when I went to see him yesterday. The only bit of funding to local councils that is not ring-fenced and that councils can spend on anything they want is money for adult social care. It used to be money for social care in general, but when we created directors of children’s services, we put the money for children’s social care with the money for children’s schooling and ring-fenced it. If the council wants to cut council tax or spend money on a pet project, the only budget that it can raid for money is the adult social care budget. That is why access rules were tightened, so that fewer people could access the budget, and that is why older people in our constituencies often find it difficult to access the care services that they need.

The adult social care Green Paper must address the issue of how to get the right amount of money into the adult social care regime. I will not make a political point, because the hon. Member for Edinburgh, West (John Barrett), who speaks for the Liberal Democrats, is probably a fervent advocate of free social care for older people. Actually, no; the Liberal Democrats have decided that that is a bad policy now, so in Scotland money for disabled children has had to be raided to keep the fund going.

What we need is a proper debate about the costs of supporting people with care needs. We need to be open and honest about the fact that in future, older people will have to provide a bigger pot of support for themselves and their care needs in old age. Younger people with disabilities have had no opportunity to build up a pot of money to provide for their care needs. Younger adults with care needs and people with learning disabilities have no choice but to go to the state for the support that they need. We need to think more openly and honestly about how we can help older people tap into the equity in their properties to support themselves in their old age so that we can free up more resources to help people with disabilities in younger adulthood. It will be a difficult debate for us.


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