18
Joint Committee on Human Rights
Oral evidence: Detention of children and young people with learning disabilities and/or autism, HC 1861
Ordered by the House of Commons to be published on 5 June 2019.
Members present: Ms Harriet Harman (Chair); Ms Karen Buck; Joanna Cherry; Baroness Hamwee; Baroness Lawrence of Clarendon; Jeremy Lefroy; Scott Mann; Lord Woolf.
Questions 30–41
Witnesses
I: Anne-Marie Trevelyan MP, House of Commons; Rt Hon Norman Lamb MP, House of Commons.
Anne-Marie Trevelyan MP and Norman Lamb MP.
Q30 Chair: Thank you very much indeed for joining us this afternoon. As you know, we are the Joint Committee on Human Rights, which means we are a Select Committee that is half the House of Commons and half the House of Lords. We are concerned, as our title explains, with human rights. In this respect, we are looking at the human rights of young people with autism and/or learning disabilities, and in particular the safeguards regarding detention, solitary confinement, inhuman and degrading treatment and the right to family life. That is our focus for this inquiry that we are conducting at the moment.
We are very grateful to you, Norman, for coming to give evidence, as you have long experience, engagement and commitment to this issue, both as a Minister and generally as a parliamentarian. Anne-Marie, you have shown a commitment in the Commons ever since you have been here on this issue and you are now an officer of the All-Party Parliamentary Group on Autism. We wanted to have the opportunity to hear from you to feed into our report, since we have heard from experts, but from our point of view you have considerable commitment, expertise and experience that we would like to draw on for our report. We are grateful to you for coming to us.
Can I start by asking a first question about Whorlton Hall? Most of us will have seen the “Panorama” programme about Whorlton Hall, which was very hard to watch and showed real abuse, taunting, cruelty and absolute inhumanity of a young person. I would like to start by asking you whether you think this is just a one-off institution that has a problem or whether there is a more widespread problem as far as you are concerned.
Anne-Marie Trevelyan MP: It was incredibly difficult to watch. I had to force myself to keep watching it. The one thing you did not mention, Chair, is that I am also the mother of an autistic young man, who has managed to mainstream through school and is now at university, thanks to extraordinarily compassionate and considered professional care all the way through his childhood. To have to watch that sort of footage, where those families and those individuals have not been supported, as our family has been, to ensure that people can find the right place, was a truly ghastly thing. It was an extraordinary effort on behalf of “Panorama” and those who pulled it together to highlight something that is entirely unacceptable, as the Minister and many others have said. I understand that there are prosecutions ongoing, which is quite right.
God forbid, there are others with such appalling behaviour going on, but the concern is that there are fundamental gaps in the way the CQC is operating and in its ability to assess whether that is the case. I have less and less confidence in the accuracy of those bodies’ records and suggestions about the state of play when eight years after Winterbourne View we again see such appalling and inhuman behaviour and treatment of young people going on.
My confidence levels were not high. I was, perhaps like all of us, quietly hoping—and Norman had been involved in trying to make sure of this—that the assessments, the reviews and, indeed, the training were improving for those who work in centres with difficult young people who need management. I now have little confidence that that was the case.
Norman Lamb MP: For as long as we lock people up in this sort of institution, often a long way from home, these things will happen. That is the uncomfortable truth: that awful things can happen behind closed doors, particularly when there is no openness and accessibility for families to keep an eye on what is going on.
I remember talking to a parent of an adult son at Winterbourne View and hearing how where he could go within the building was progressively restricted. He was travelling some distance to visit his son. Although he raised concerns with the local authority and the primary care trust, as it was in those days, no one really listened to him. There was an awful sense of voices unheard and people feeling powerless. I remember to this day him saying to me, “I felt guilty because I could do nothing for my son”, and that is a shocking indictment of the system.
For as long as these institutions exist, any claims that we must make sure this never happens again are hollow words, because it will happen. We have to change the model of care, which for the vast majority of people is inappropriate, in these institutions.
Q31 Baroness Hamwee: Once again, it was a journalist who, if not uncovered, then brought to light what was going on at Whorlton Hall. We wanted to ask about the role of the regulator and whether there is any point in having one. The CQC rated Whorlton Hall as “good” a couple of years ago, giving what now turns out to be false reassurance. Is it worse than having no regulator at all? Is it something about the way the CQC carries out its inspections? Do you have comments on anything about that?
Norman Lamb MP: We need to some extent to reserve our judgment, given that they have commissioned an independent review of how they went so badly wrong with this, so to reach conclusions before we know what that review says would be a mistake. It reinforces the sense that there is a limitation to what a regulator can do. There may well have been failures by the CQC. For me, there is a big question mark. We hear that there were whistleblowers trying to raise concerns. Is this another case of those whistleblowers not being listened to? It is deeply disturbing if that is the case.
Even the best possible regulator that always performs well will sometimes not uncover awful things that happen in institutions. To some extent, it will be a question of luck whether they hear from someone who raises a concern that leads to a line of inquiry. You just cannot guarantee that you will get the right culture purely through regulation and inspection. It has to be part of the mix, but it is not going to solve the problem on its own.
Anne-Marie Trevelyan MP: I am probably less kind than Norman in that sense. For me, where regulators are responsible for overseeing places such as these, where very vulnerable people are confined, it seems to me that they ought to have more teeth and perhaps more imagination in how they do their inspecting. If somebody knows you are coming, you are going to be on your best behaviour, I hope. That should be a normal course of action.
The Committee suspended for a Division in the Commons.
Chair: Norman, to recap, you were saying that the system is so problematic, fundamentally, that however brilliant the regulator was you would still have concerns. Anne-Marie, you were beginning to tell us that you think that the regulator, none the less, should still be able to do much more than it apparently was able to do.
I am concerned that if you have a regulator with authority saying, “This institution is good”, it must disempower relatives who have concerns and make them feel that they cannot pursue them because the official charter mark of the organisation is “good” and it must therefore protect and shield the abusers.
Anne-Marie Trevelyan MP: That is true. The challenge with all regulators, which we see with Ofsted and these issues in the special school system, is whether we are asking regulators who regulate mainstream parts of their departmental brief when we need something much more tailored if we are to give families confidence in areas where our very vulnerable people are being, we hope, well looked after.
I raised this with the Minister after the Whorlton Hall issue. If a journalist going undercover as a staff nurse can identify this, why on earth did the CQC not do what I would call secret shopper activity as part of its inspection programme? Norman makes the point that in closed environments the risk of coercive or abusive behaviour is more likely, because nobody is watching. If that is well known, why on earth are the regulators not already saying in those particular areas, “We must do things either more robustly or, indeed, in a different way, in order to give ourselves the genuine assurance that we can say it is a safe place for you to have your young children and young adults in care?”
It is a problem with Ofsted as well. Within the special needs framework, there is less oversight of areas where the most vulnerable children sit. As far as I am aware, the regulators have the powers. They do not choose to invest more time in the few particular institutions that are looking after our most vulnerable children. In a way, that is the wrong way round.
Norman Lamb MP: Can I raise one other quick point about the CQC? I challenged it when I was Minister and since. If we all agree that this sort of care in an institution, often involving a long stay, is the wrong model of care, why are we registering these places in the first place and why are we reregistering? It is interesting that the private sector is confident enough to invest tens of millions of pounds in new facilities providing what I regard as the wrong model of care, safe in the knowledge that they believe they will get their institution registered.
It raises the question: is the CQC using the powers available to it effectively enough to consider refusing to register in the case of maintenance of institutional care, or does it need additional powers? They tell me that they sometimes refuse registration and they end up in litigation against some providers, but there is a big question mark. For years now we have regarded this as the wrong model of care, yet institutions keep getting registered by the regulator to provide that wrong model of care. There is something wrong there.
Baroness Hamwee: Anne-Marie, before we broke for a Division, you said that there was a need to be imaginative, which really struck me. I thought of Ofsted before you mentioned it. I wondered whether either of you have had experience, in any part of the forest, that gave you ideas about how a regulator and inspector, which I appreciate are not the same thing, might go about the job, the depth of investigation, who they might meet, what they should look at, what staff they should deploy and what the role of the commissioners should be in this.
That is a very wide question, but if there are any examples from elsewhere that you think we should throw into the mix in our report, without taking the whole afternoon, I would personally like to hear them.
Anne-Marie Trevelyan MP: A missing link for all these regulators is that because families have no automatic right to be informed of restraint or medical use, in either the school or the medical environment, they have no access. No record is required, particularly in schools. Children can be restrained during the day and the parents do not have to be informed. They might be informed. A good head teacher might indeed have that as part of their safeguarding rules and regulations, but they do not have to be.
For me, a good regulator or the inspector in that institution ought at that point to have recourse, in a literal sense, to the book that says, “Here are all the things that have happened. We told the parent or guardian, and they discussed it”. None of that exists, because there is no requirement for it to exists, in either the medical or the educational setting, so the inspector starts from a blank canvas within which to inspect, and is reliant on those who, if they are not doing their jobs properly, are not going to share that information. The young people clearly have no voice in the process.
Some of our secondary schools have great inspector-student discussions to get a sense of how well the school is doing. In the institutions with our most vulnerable, those relationships do not exist with the inspector. There is no relationship with the inspector to discover and make progress. We have a fundamental gap in the information and the connection with parents. Norman mentioned earlier the family’s inability even to know how their young person is being looked after. The inspector has nothing to work from to identify whether there are risks that are not obvious.
Q32 Lord Woolf: I should mention that I have a grandchild who suffers from autism, so I put that on the table.
It happens that Baroness Hamwee and I both heard evidence from a European source yesterday, and I wonder whether you have any comments about this. The impression I got is that we are falling behind what is happening in other places because we do not have any feeling that you should not be using pain and force in this situation. We heard that there might be methods by which you can rule out inflicting pain. May part of the trouble be that those who should be supervising are too complacent about the methods that are being used?
Norman Lamb MP: I do not have a complete knowledge of the situation in other countries. It is worth noting that the Netherlands, for example, has more of an institutional model of care than we do, so we must not assume that we are necessarily behind the curve. This is a challenge for all countries.
I wanted to make the point anyway that beyond the horrific abuse and taunting that we saw in Whorlton Hall, other human rights abuses are endemic in the system of institutional care, such as the widespread use of restraint. We now have the clear evidence of how you can avoid the use of restraint in most circumstances. We also know that for many people the behaviour they display results from the constraints that are imposed on them by being in an institution.
When I was Minister, I went to visit a 15-year-old girl called Fauzia at St Andrew’s Hospital in Northampton. She was in there for nearly two years. She had complex autism. She was constantly being restrained, put in effect into solitary confinement and very rarely got outside, all conditions that, for someone with complex autism, are bound to result in increased anxiety and increased problems.
From the moment she was finally discharged, because we instigated a review as soon as I had been there, to when I visited her two years later, she had not been restrained on a single occasion because she was outside this fraught environment and she had people looking after her who were trained in how autism affected her as an individual, which is critical. Keeping people in alien environments, too often with agency staff who are not properly trained in how autism affects an individual or how to avoid needing to use restraint in the first place, leads to these fundamental breaches of people’s human rights.
You ought to be aware that there is a potential legal challenge to the Department for Education in respect of the use of restraint in residential schools and other school settings. They take the view that there is a clear conflict with the European convention, our own Human Rights Act and, indeed, the United Nations convention. We need to regard this as a human rights issue. This is why I am so pleased that you are doing this inquiry. Shunting people long distances away from home, restraining them, using force inappropriately when it is not needed and, indeed, locking them up when they do not need to be locked up, in my view all amount to human rights abuses.
Lord Woolf: What about the size of the place and the number of people? Would you agree that, for people with these problems, it would be much better if more attention was paid to having smaller units closer to home?
Norman Lamb MP: Yes, absolutely.
Anne-Marie Trevelyan MP: You hit exactly on the key point, Lord Woolf, but the challenge is the assessment of the young person much earlier on, long before they ever get to the point where so much crisis experience has been put upon them, particularly those who are autistic and whose view of the world is simply different from a neurotypical person’s. Their processing is different.
As the mother of a very healthy 20 year-old, with a lot of adaption through his childhood, we negated the risks as we went through with a huge amount of support from all those around him, along with money, intelligence and effort by a lot of people. Without all those things, he would have fallen out of school at the age of seven or eight, and goodness only knows where he might be now. He is a very intelligent young man who will be economically useful to the nation, I hope.
The reality is that very large numbers of those on the autistic spectrum in particular could get to adulthood safely if only we could assess them individually. The challenge with autism is that the stresses of the neurotypical normal environment that we all live in perfectly comfortably, designed for all of us who are not autistic, are individually very difficult. It might be sound, it might be light, it might be temperature, it might be taste. All your senses can be entirely maladjusted to the environment that we all live in perfectly comfortably, and those pressures, if not released on the way through childhood, become impossible to bear.
The challenge is identification. Parents can invariably tell very early on that their child is not like other children, but I always say that all parents are novices. You get your first one and you have never done this before. It is difficult to be a parent anyway. When you have children who do not fit with the normal rules and regulations, of whom there are a few rather than tens of thousands, they are likely to fall out at some point if we do not scoop them up at that point and provide an effective assessment system, which has to be individual, which is where this does not fit very easily with any government policy.
Autistic children are incredibly resilient. It is fascinating. They will keep trying. One of the particular character traits of autistic people is that they have no ability to lie and they are unbribable. It is a very disconcerting experience as a parent when you are trying to move your family through the day. The system they live in makes no sense to them. They are constantly battling to understand an environment that is very alien to them, because all the norms, such as being nice to someone when you do not want to be, and saying thank you when you did not like what they gave you, make no sense to an autistic mind. They are irrational.
Those pressures, of the environments around them and children behaving towards them in a difficult way, build over years. If we can assess early on that these children simply need an adaptive environment in order to thrive, the vast number of them can thrive and make it through. The key problem for me is in the assessment programme, which can take up to two years in some parts of the country. It is terrible.
Norman Lamb MP: It can be longer.
Anne-Marie Trevelyan MP: Yes, indeed. We are creating an acute problem that is almost entirely negatable, if only we could admit to ourselves that there is a cohort of our population of children who need to be in a slightly different environment, avoiding the need for the extreme traumatic behaviour that we see later if we have not looked after them early on.
Lord Woolf: Does that fit in with what I put to you both, which you were kindly dealing with, about the availability of small units? Then you can have different forms of resource that are appropriate to doing what you are saying, once you have made the assessment.
Anne-Marie Trevelyan MP: That is absolutely right. There are a number of them around the country. Young adults in Northumberland, where I am, tend to be sent to Dorset, because that is close by. One of our challenges is having provision across the board. I do not know why, but Dorset has some fantastic provision of what I would call sheltered housing for young people. They are houses of two or three, mostly young men—there are a few young women, but they are mostly young men—with a carer or sometimes two, depending on the needs of these young people. Their environment is adapted to their particular needs, in the same way that you would provide a stairlift or, indeed, the relevant bath if somebody had physical needs. The challenge of an invisible, chronic illness, if you want to call it that, of autism is that we cannot see it and that we only treat at the point of traumatic behaviour.
Norman Lamb MP: Anne-Marie is absolutely right. Getting it right in childhood is the key to this. There is a fantastic service in my own county of Norfolk called Starfish+. This is a community-based service for children and young people for learning disability rather than for autism. Their whole mission is to keep people out of in-patient admissions. They will help families through crises. They will, if necessary, stay with a family over a weekend to get them through a crisis, because it often happens that on a Friday night a family is in crisis, a teenager gets admitted to an institution and then they get stuck there.
The leader of this brilliant service, Melanie Bruce, a psychologist, tells me that as soon as that admission happens that teenager gets trapped and it is often very difficult to get them out again. It is almost like a life sentence. It is almost like state-sponsored abuse of children and teenagers.
I have tried to argue to NHS England that if this can be provided in Norfolk it could be provided everywhere. There is no reason why we should not do this, yet it is the exception, not the rule. That is not acceptable.
Q33 Ms Karen Buck: Can I ask you about the NHS long-term plan and the issue of targets?
In the NHS long-term plan, there is a revised target to reduce the number of young people with learning disabilities and autism in hospital to 1,433 by 2023-24. That is a revised target from setting that for 2019. First, what do you think about that? What are the implications? What do you think about the whole target issue? Targets always have within them some perverse incentives, risks and downsides. On the other hand, having no targets allows people to escape any real accountability for making progress.
Norman Lamb MP: It is best to recognise the risk of perverse incentives, but that is no reason not to have challenging targets. The target that has been set is not challenging enough. You alluded to the target and the deadline of March 2019 for reducing the numbers by between a third and a half. We fell well short of a third. Twenty-something per cent was achieved. To shift that to 2023 just sends the signal to the system: “Take your foot off the pedal”.
Ms Karen Buck: Why did it happen, in your view? Do you think that might have been seen as not meeting the targets?
Norman Lamb MP: There is the risk that that played a part in the thinking. It does not have enough priority within government, bluntly. It is fair to say that this issue was the most frustrating issue I dealt with as Minister up to 2015. I saw complete inertia in the system, a system that was refusing to change. Bear in mind that in December 2012 we published Transforming Care, which was a concordat. In other words, NHS England, the Local Government Association and all the key players signed up to a commitment to change, and then they failed to do it.
You have to then ask yourself, “Why is this change not happening? What needs to happen?” I became convinced that we needed legal changes to strengthen the rights of individuals and families. In 2015, I published a Green Paper, No Voice Unheard, No Right Ignored, which sets out a number of proposals, including the potential right to a personal health budget, so the family and the individual have some control over where the money is spent, the right to challenge decisions that are taken and a pooled budget between the NHS and local government, which had been part of the plan in 2012 but has still not been delivered in most areas. It is scandalous that we do not yet have pooled budgets.
I set out those proposals in March 2015. They still have not been implemented. You need national leadership and a sense of mission to drive through changes, to change this scandalous practice, because we are simply not achieving change fast enough.
Ms Karen Buck: Is it ever possible, given the scale of the NHS and social care priorities, for something this vital but specific to get that kind of priority and attention?
Norman Lamb MP: It is possible. If you go back through the history, I reread the introduction here and it talks about how, since the 1950s, it has been a key goal of public policy to bring an end to institutionalisation as a model of care for disabled people. In that time, we have made significant progress on deinstitutionalisation. There are vast numbers of people who would have been living in institutions who are now living independent lives, whether with mental ill health, with other disabilities or with learning disability and autism, but we have not completed the task.
It is possible, and we absolutely cannot conclude that we should give up on it, but you need inspiring national leadership, someone demanding change and challenging the system constantly to deliver that change. There are also massive vested interests in maintaining the status quo. Just think about the amount of money being made in institutions—thousands of pounds a week for filling a bed.
Anne-Marie Trevelyan MP: The target is the wrong way round. The target should be zero and the exception should be justified. Norman is exactly right: the vast majority of these young people should not be there in the first place and, if given the appropriate assessment and care packages pulled together, do not need to be in that environment at all. We need to turn it on its head. Norman is exactly right: it needs robust ministerial leadership to make progress.
Some of my young people I mentioned in Dorset are there to the tune of tens of thousands of pounds a week, placing my constituents a very long way from home and from their families. Why is that care not local? In Northumberland, we are starting to look at that and ask, “Why on earth do we not provide something built for the person?” It is unique, but it is cheaper than the high-cost, 24-hour care, institution-based prison environment, which is what it is.
The only way to drive is to say, “This is not acceptable. You justify, by having assessed this individual fully, that there is no other safe place for them than some sort of closed environment. Otherwise, you take what is a huge pot of money being spent on a few people and spend it in a different way”. That is the only way we can kick the system to turn it round. The question is whether that has to be done through some sort of legislative process to make that declaration.
Norman Lamb MP: It is worth having another look at the proposals in here. One of the specific proposals is for doctors who are sectioning someone to have to justify why community-based support is not appropriate, because that does not happen at the moment. There is much more in there as well.
Q34 Chair: From time to time when we were in government we would have a special task force, for example on homelessness, attached to No. 10 to blitz the issue, because it crossed a number of different departments, such as DWP, local government, environment and communities.
Bearing in mind that this has been an issue for such a long time, crosses different departments and requires top-level leadership to drive what should be quite an easy solution that everybody believes is the right one, should there be a short-term No. 10 unit to tackle this and solve this problem, or should it meander around in the Department of Health—says she, rather loading the question?
Norman Lamb MP: Something of that sort would be valuable.
Chair: This would perhaps take in your Green Paper.
Norman Lamb MP: You are right that, first, it cuts across government departments. The obvious one is between education and the Department of Health, but there is the Department for Work and Pensions as well. It requires someone at a very senior level. In my experience, during the coalition, the Prime Minister at that time, David Cameron, made his own dementia challenge, the Prime Minister’s dementia challenge. This is not to say that everything is right, but having that level of commitment drove change in the system. Something of that sort would be worth considering.
Chair: That leads us neatly on to what Parliament might or might not be able to do about it.
Q35 Scott Mann: You have covered some of this already. We had a really good debate on autism in the spring and lots of Urgent Questions. You only have to flick through the Written Questions book every day to see the number of people who are asking questions about autism and the challenges that young people with autism are finding. We are still witnessing those terrible videos of people being taunted, either online or on these programmes.
I guess my question is this: how can we force this agenda more? I know you have talked about leadership. Describe to me how as parliamentarians we can get together and move this further up the agenda.
Chair: We are not feeling very effective right now, are we? We can look at all the brilliant work that has been done, and the absolute commitment and expertise, but it has not delivered, as Karen’s question drew out. The targets just get kicked down the road. What is the mechanism by which Parliament can get a grip on making this happen?
Anne-Marie Trevelyan MP: The Government are doing a cross‑departmental 10-year review of the Autism Act, which Cheryl Gillan brought in 10 years ago. The Government have committed to look cross‑departmentally, which is unusual in our silo environment, at how departments are doing on the provision and the adaption for those with autism. My fear is that everyone will do the review, it will come back in and everyone will say, “We have reviewed”.
The challenge is moving forward to that next level, when you have it and it is on everybody’s radar, but we are still not driving the change we need for a proportion of our society in the way we do for those with other visible disabilities. Cheryl and I would be the first to say that we would love a powerful cross-government task force, if that is the right word, to take pots of money that are not being used effectively—for relatively small numbers of people, but we are not using the taxpayer’s pound effectively—to provide the best adaption, provision and protection for those who do not need to be treated as if they are on the scrapheap.
The proportion of those with autism who are not in work is much higher than it needs to be. There are relatively simple ways to change this, but a lot of them are cultural, which is probably the challenge. I am relatively new in this place, but the challenge of shifting cultural norms within a department seems to be incredibly difficult. That can only come from an outside but well-supported perspective to push that forwards.
As a Public Accounts Committee member, we waste so much money not directing it effectively, which would be to listen to those who work in specialist areas, to get government to be much more targeted and effective. That would also have the economic benefit of not allowing those on the autistic spectrum to be considered scrapheap material, which the very large number of them absolutely are not. They could be thriving in their own lives and as part of our economy.
Norman Lamb MP: First, your inquiry now is very welcome. It will apply pressure on government to do something if you can be clear and strong in the recommendations you make about any legal changes needed to strengthen the rights of individuals. I have alluded to the Green Paper proposals, but there are others as well. You can put pressure on the Secretary of State to make a personal commitment. I would like to see Matt Hancock personally commit to seeing this through, provided he stays in post, which is a big question mark. It needs that drive at Cabinet level, perhaps backed by a task force but with a Cabinet member responsible. Then Parliament can hold that person and that process to account for progress that is then made.
We also have to remember that there is a responsibility on us parliamentarians. I have secured a few debates in the last three or four years on this subject, and the number of parliamentarians who participate in the debates is very low. There is a responsibility on all of us to understand how serious and how much of a human rights issue this is, and to use our authority as Members of Parliament to challenge government to change.
Q36 Baroness Lawrence of Clarendon: Some people say that we should close all these institutions down, and there are those who say that we need to keep a small number of them open because of the young people’s challenges and the need for them to have some alternative. Who is right in this?
Norman Lamb MP: Broadly, as I have said earlier, it is the wrong model of care. They are called assessment and treatment units, and there are occasions when people will need assessment and treatment for short periods of time, but the idea that it is appropriate for people to live in a hospital for five, 10, 15 years or more is inappropriate.
I come back to the point that you have to get it right in childhood and in teenage years to stop the drift into institutions in the first place. The occasions when assessment and treatment is needed should be in locally based small units, not sending people away where too often the authorities end up almost forgetting about them. If you do not have a parent who can fight the system, you are really isolated and neglected, and that is dreadful.
Anne-Marie Trevelyan MP: I agree with Norman. We need to aim not to have institutional homes—I called them prisons—for these people, the vast number of whom should not be there and would have much better lives if they were not. We could probably provide them with something more cheaply, but also something that fulfils all that we should be doing as a civilised society.
There is a real challenge with assessment in the broadest sense, because again, at an early age, the education, health and care plans, which are a good step forward in theory, do not necessarily provide the full spectrum of support to the families while the young person is assessed. Indeed, the skill sets to assess them may not be in a particular council. That is one of the gaps that we have.
With adoption, we have regional centres of excellence for the assessment of children and the need for adoption. I never quite understood why a Northumbrian child had to be adopted by a Northumbrian person, on the basis that we are looking for a happy home for the child. It could be somewhere outside a county boundary. The regional centres have made adoption more effective, but you have really good centres of expertise around the country.
In regional centres you would have the right number of educational psychologists, with the breadth of knowledge of the various aspects of autism and other disabilities that they might need, to provide these young people much earlier on with the sort of framework from which the system could then support them properly so that they never get to the acute stage.
We have an issue, and we will have a gap for a number of years, because we were not assessing. We have young adults and older adults for whom no real assessment was ever made and who are therefore in a very poor state of mental health. I always say that we all have mental health and sometimes we have mental ill health. They are in a state of mental ill health because we had no way to support them to that point. We need a targeted, one-off look at all of them, and then to say the system coming through for the next generation will work better.
The point of assessment is critical, because we do not do it nearly well enough. We ask parents to take on a huge burden of responsibility, certainly for children. Again, I come back to the fact that parents are novices, not experts, educational psychologists or doctors. We need to ensure that the child gets the proper assessment and then that the money that should flow better with the child, and often does, can do so.
If we could think about it in a regional sense, we would start to build genuine support within accessible reach for families and sent by GPs, taking the pressure away from that primary care hub, to help those young people be well assessed, so that councils could use their money much more effectively to support them at least regionally, if not close to home.
Baroness Lawrence of Clarendon: Can I follow up on that? One thing we have not touched on that deeply is the cost, because it costs more for them to be in one of these institutions than it does locally, where their family can visit them. So many inquiries and things have been done. How many inquiries have looked into the costing? That is an important element of what needs to happen, rather than keeping these big institutions open.
Norman Lamb MP: The great prize here is that if we do this right we can transform people’s lives by giving them independence and a better life, living in the community and, in the case of some people, having employment and becoming economically active. Alongside transforming lives, you end up saving the state money. The failure to get this right is costing a fortune and abusing people’s human rights.
It is all about getting it right in childhood and intervening early. If you get someone out of an institution and give them a better life in the community, the cost is almost always lower. I met with a community provider yesterday and they described—I have heard this many times—how as you get to know the individual and you work with them you can often, through time, reduce the level of support required and improve that person’s life. The burden on the local NHS also reduces. It is a win for everybody, but this extraordinarily stubborn failure to change is costing an awful lot of money.
Q37 Baroness Hamwee: It strikes me that we have been talking a lot, inevitably, about the structures. I wonder whether we should say anything about individuals’ underlying attitudes and prejudices. I am thinking about the very direct taunting and abuse that we hear about and have seen. Are there things that we should be saying? I suppose this is in the discrimination and equalities area. I just wanted to throw that in to see whether you think we should.
Norman Lamb MP: I would first applaud “Panorama” for exposing it, because that brings it into the public consciousness. Most people are completely unaware of these institutions existing until something like “Panorama” comes along and shocks them into realising that something awful is happening, perhaps close to where they live.
There also needs to be a constant effort, rather like with mental health and the Time to Change campaign, which focuses on confronting stigma. The truth is that people with autism and learning disabilities continue to be treated as second-class citizens in very many respects, and that needs to change.
Baroness Hamwee: They are treated as autistic, not people with autism.
Norman Lamb MP: Yes.
Anne-Marie Trevelyan MP: Absolutely, that is exactly right. Those who were identified on “Panorama” are being investigated by the police, and I understand that the prosecutions are going ahead. That was clearly unacceptable, abusive behaviour, and our legal system at least deals with that once it is identified.
You have to question, within any of these care settings, why in an environment where really vulnerable people are held, the level of training and oversight of staffing is lower than that of nurses in a hospital. There is a strange disconnect in the training requirement or, indeed, whether it is being met. I will come back to whether the CQC is overseeing whether we are comfortable with the level of skill set. Clearly, to understate it, there was a massive lack of compassion, which you would hope goes with that choice of work in the first place, let alone abusive behaviour. There is training and understanding the patient.
Coming back to the challenge that these are all invariably unique individuals in the way their stresses manifest, that challenge requires more training and understanding of the multiplicity of behaviours that you get from those on the autistic spectrum and, indeed, those with other learning difficulties. It is not like saying, “This is a broken leg. We have the same way of fixing the broken leg. Some are longer than others, but it is still the same process”.
With invisible disabilities, you have to treat on an individual basis, so the training requirement is very different, and we miss that. Within the educational framework, at a basic teacher training level we are trying to get an understanding of what autism might look like. It does not always look the same; it triggers at different points, and all those things.
We have made huge strides in understanding and broader education, but it has to filter into the professional-level training. We see it in the work on PTSD in trying to get all GPs to understand what it might look like. It does not have a name when it walks into the surgery. Autism does not necessarily have a name. Many are not diagnosed and have somehow made it or perhaps fallen out of the system. That broader societal understanding, as well as understanding on the part of all those with professional caring responsibilities, is missing still and there is a lot more work to do.
Q38 Lord Woolf: I am hesitant to put this to you, but we have to think about the fact that, as you have told us, unfortunately those who should be putting the system right are not moving to do that. In those circumstances, do either of you feel that a clearer and new legal obligation could be helpful so that it was more readily available to families and they could get a remedy and the courts could play a part?
Norman Lamb MP: I do not want to repeat myself. I made the case in 2015 for new legal rights for individuals and for families.
Lord Woolf: I am sorry. I apologise.
Norman Lamb MP: I still feel very strongly that those rights are needed. When you talk to families of people with learning disabilities or with autism, too often you just hear that they feel completely powerless. They have no voice in the system at all. No one listens to them. That is not to say that giving new legal rights suddenly changes the world, but it is part of changing the culture and shifting the balance of power towards individuals and away from the bureaucracy.
Anne-Marie Trevelyan MP: That is absolutely right. The challenge that I have seen, both as a parent of a child with autism and supporting other families in the area as a result, is that when you realise that you need something more for your child or special support, if your council is not willing to engage, you are basically stuck as a family, let alone further down the line. I absolutely agree with Norman that there needs to be some sort of statutory requirement to report back to the family or guardian of the young person if they are under the care of any other body.
Whether they are at school during the day or in a longer-term setting, there simply is not even the sense that the systems are there to support families. They are a burden somehow if they disturb the system. That is what I hear so often from families—“We have tried and we have to keep fighting just to get through the door. The head of education just will not talk. They have a limited budget, X, Y and Z”. The families simply do not feel empowered, and too often they are not empowered. They are at the mercy of someone who does not understand.
Norman Lamb MP: Too often, it comes down to whether you have private money to challenge, to fight or to provide independent provision, or whether you are articulate, middle class and professional, so you have the confidence to take on the authorities or go to your MP. Very many people do not have the capacity to do these things and in my experience their children just get completely neglected. That is really shocking.
Lord Woolf: Again, it comes back to the fact that what we have done with legal aid is disastrous. If we were making a recommendation for some action there, it would be very helpful to suggest what form it might take. I wonder whether the Green Paper does that at all.
Norman Lamb MP: It sets out proposals for new legal powers, so it is worth looking at. I can leave it with you, but it is available online.
Q39 Joanna Cherry: Following on from that, a lot of the families this inquiry has heard from have described just that feeling of powerlessness that you have both talked about, and a feeling of not being involved in decision-making about their children, even though they know them best and have managed them through periods of difficulty before.
Separate from what Lord Woolf was talking about and separate from legal duties, I just wonder whether there is a need for a proper independent complaints process. I have been looking at the recommendations of the final report of the independent review of the Mental Health Act, which talked about amending Section 132 to require managers of hospitals to provide better information on complaints to patients and nominated persons, and to train staff better on their responsibilities in relation to complaints. We have heard that some families are reluctant to complain in case it makes matters worse for their child.
I suppose my question is this. Is there really a need for an independent complaints process that is taken out of the hands of those managing the hospitals or those dealing with the local authority, and some sort of independent body that complaints can go to? I do not know whether the Green Paper said anything about that. If you think there should be an independent complains process, what would that look like?
Anne-Marie Trevelyan MP: There is a key point, which is that we should be stepping back from that. Before you get to that point, as the family or the guardian of a vulnerable child or young person, if you have statutory rights, and indeed you are given information about the treatment and the assessment they are getting by legal right, that will change the behaviour of the caring professionals by definition.
If there is an automatic reporting back, you will instinctively be more aware that you are not dealing with an individual; you are dealing with a vulnerable person who in most cases has a family who wish the best for that individual but who are disempowered at the moment. If there is an automatic reporting process that they do not even have to ask for, I would suggest that, a bit like a school report, that alters the way those professionals think and automatically empowers the families to think, “They say all this. It does not sound right. That is not how we have ever dealt with him before”, or whatever it would be.
You are automatically opening up, in a way that just does not exist, a dialogue space between the civilian, uneducated parent who is trying to work out how to look after their child and the professional who knows all about everything except their individual child, who does not look like any other child because that is the nature of the beast.
Norman Lamb MP: There is a case for considering some independent process. We did not propose it in here. It is interesting that we also have a Children’s Commissioner for England and, indeed, separate ones in Scotland, Wales and Northern Ireland. Is there a case, given the stubborn refusal to change the system, for having someone with the power to investigate failures of this sort and to challenge local areas on why they are not pooling the budget and why they are failing to get these people out of institutions, who have perhaps already had a review to say that they are able to live independently and nothing has happened? Having someone with the power to go in and expose, name and shame, and report on what needs to change might be worth considering. It is something for you to think about, perhaps.
Q40 Chair: The point about reporting incidents of solitary confinement and restraint to parents is very interesting, because we have heard from people about the need to report into the department or up to the Secretary of State about restraint and solitary confinement, but the idea of a legal obligation to report to the parents is a very important avenue as well.
Anne-Marie Trevelyan MP: There is not one at the moment. Nor indeed, certainly within the school environment, is there even one to maintain a record of restraints use during the day—one hopes a good school would do it anyway—so when Ofsted is inspecting it has nothing to formally look at.
I had a constituent’s case, which was tragic in many ways, where a very young child in a special school was restrained because her behaviour became violent, to the point where she used to hit her head in such frustration that she went blind. The parents are incredible parents and they have done so much work since, not only for their own child, who is now home taught and is developing beautifully. She is nearly 10 and is doing incredibly well.
There was no requirement for that special school to tell the mother when she picked her up at the end of the day that they had tied her daughter to a chair because she was having a panic attack in effect and becoming violent. They wanted to protect her from herself, but in restraining her they made her anxiety much worse and she physically caused herself permanent damage.
There was no requirement to mention that at the school gate. That seems just extraordinary to me. Would you not say, “Your child was sick at school, just so you know”, or, “They soiled themselves. We sorted it out. Here is the wet kit”, in the way you would for any normal environment? Yet for those extreme cases, for our most vulnerable children, there is no legal requirement for that to go on, nor indeed for records. Many do, but it is not there and parents are in a state of profound frustration. As ever, you have to trust the professionals who you put your children into the care of, otherwise the whole world falls to pieces. There is a huge gap there.
Norman Lamb MP: Anne-Marie and I jointly applied, together with Helen Hayes, for a debate on the use of force on children in particular and the fact that we have been waiting since 2014 for the Department for Education to issue guidance. It is extraordinary that there is more guidance and protection for the care of adults with special needs, learning disabilities, autism or mental ill health than there is for children. The guidance available through Ofsted is wholly inadequate. The legal framework is inadequate. It does not comply with international human rights standards. This is the basis of the legal challenge that I talked about earlier.
The idea that the child can have force used against them and the parent not even be told is just extraordinary, so this legal challenge is very welcome, but the Department for Education needs to get on and issue its guidance. I know that the intention at the moment is for it to apply only to special schools, but it should apply everywhere. In every school, in every setting where there is a child, the same guidance should apply, and it should be aimed at avoiding the use of restrictive interventions.
Q41 Baroness Lawrence of Clarendon: We are talking about recording. One of the things we saw in the “Panorama” programme is how recording is done on restraint, and we are not writing down exactly what they have done, so even if the inspector goes in and looks there is no way they are going to find out exactly what has happened. Things have happened in the homes, but the recording is not done in a way that gives the truth about the incident that has taken place with those individuals.
Norman Lamb MP: There is always the problem of how you ensure that recording is done honestly and accurately, and that goes to the culture and the management of the organisation, the training of staff and so forth. A starting point would be to require recording in all cases, including for children, and not only recording but reporting to an appropriate regulator, so we have the information nationally about what is going on in institutions. You are absolutely right to highlight the importance of also ensuring that the recording is accurate.
Chair: Can I thank you very much for coming to give evidence to us today? You have given us not only a very good analysis of the problem, but some very good proposals for the solution we must strive to achieve. I am really grateful to you.
On behalf of the 24 young people who are currently incarcerated in these places, and very often being made worse as a result, we can take our cue from your evidence today, so thank you very much indeed for it.
Oral Evidence: Detention of children and young people with learning disabilities and/or autism