rose to ask Her Majesty’s Government what steps they are taking to provide support for the families of children with autism.
The noble Lord said: My Lords, I start by declaring an interest as the father of a 13 year-old daughter with autism. The number of cases of autism diagnosed in the United Kingdom has increased tenfold over the past decade, and that has led to a growing recognition that support services are vital to people with autistic spectrum disorders and for their families and carers. Sadly, that has been illustrated by the recent tragedies.
There is no known cure for autism, but much can be done to support people with the condition and their families. I will refer to autism but mean it to cover all autistic spectrum disorders, as there is a need for provision right across the spectrum. I wish to touch on the range of family support services, including respite and short breaks, shared care and childcare. Such services provide relief for both the carers and the child with autism and can help the child's personal and social development.
Research has shown that trying to access services and entitlements during the early years is one of the major causes of stress affecting the family life of a child with autism. Three in five families report significant levels of psychological distress, which is more than twice as high as parents in general. Nine out of 10 of the children in a study had significant mental health needs or behavioural difficulties, which is twice the number of those with learning disabilities and 10 times more than children in general. If family needs are assessed from the first instant a problem is identified, and appropriate support and respite are provided, a great deal will be done to relieve this stress. Yet there are too many examples of failure to deliver such support.
The All-Party Group on Autism, of which I am secretary, published a manifesto in 2003 that outlined a vision for autism services in 2013. Its objective for family support is that,
“support and training services will be available for all carers, siblings and families immediately following diagnosis”,
“multi-agency teams in every area will be able to provide accurate and sensitive information to families”.
A similar vision is laid out in the National Service Framework for Children. The framework’s standard on disabled people states:
“Families are offered a range of appropriate family support services through multi-agency packages of care”.
The framework also recognises the need for short breaks, which is particularly acute for the families of children with autism. It recognises that weekends and school holidays are crucial times for short-break services to be delivered. Sadly, the progress of the framework to date has been limited. I hope that the Minister will state that he and his department are still committed to seeing the framework delivered, and that he will be able to give an update on its implementation, particularly of the standard on disabled children and the autism exemplar.
A recent audit of local authorities and a variety of stakeholders, which was commissioned by the Department for Education and Skills, emphasised respite services as a priority area with a gap in provision for children with autistic spectrum disorders. This was picked out as an area of high importance and low availability. Can the Minister advise the House on his department’s assessment of the report, particularly of the recommendations on respite and family support?
There is further strong evidence that provision of specific types of family support services is insufficient. A survey by the National Autistic Society found that 70 per cent of carers of children with autism say they cannot return to work due to a lack of appropriate care facilities. Only 15 per cent had received any support from social services in their caring role. As I have already mentioned, short breaks are a vital service for children with autism and their families. However, 90 per cent of short-break schemes have waiting lists. Children with autism account for a third of all those on waiting lists. Such services are frequently not accessible to children with autism. The availability of appropriate childcare is a similar problem. The fact that the Childcare Act will pay particular attention to the needs of disabled children is certainly welcome, but there is concern that local authorities will not be able to meet the demand for the significant level of specialist childcare that would be needed for the families of children with autism to take up work.
Respite services are needed at certain crucial times, such as during holidays, but, in another survey, almost all parents felt that this need was not being met. Ninety-three per cent of parents did not receive help during holidays, and 87 per cent requested a break from caring. One of the major barriers facing children with autism is a lack of trained professionals to support them. Training is required for all relevant professionals to improve the number and quality of facilities. Many providers of mainstream short-break services, and even of care for disabled children, feel unable to cater for children with autism. Over 80 per cent of service providers want more support and information about autism, and over 60 per cent said they required a specific training package. There is particular difficulty in providing for children with challenging behaviour. Similarly, from the parents’ perspective, understanding autism is the most important criterion in choosing a service for their child. Will the Minister outline what his department is doing to improve the awareness and understanding of autism among providers of social care and childcare?
Investment in the workforce and in specialist services is a vital investment. Offering the right service at the right time can prevent families reaching crisis point. To provide services only in crises, on the other hand, is very costly to the local authority, not to mention extremely distressing for the family. Furthermore, failure to provide services for children with autism only stores up trouble for the future. Some families will continue to access few or no services. Many people with autism continue to live with their parents into adulthood. For others, the pressure will lead to family breakdown and longer-term residential provision. This is an issue of quality of life for both the child and the family. Without support, families can feel isolated and that they have no one to turn to. Where autism-specific services are provided, they usually work well. Social skills groups, for example, are a relatively low-cost initiative that not only develop the child’s ability to interact, but provide a regular activity for the child and help to prevent further difficulties.
There are examples of good practice: working with the voluntary sector to provide guidance to families as soon as a diagnosis is received; the establishment of respite centres, which are attached to schools but are not only for the use of school pupils; and the provision of in-home support, giving parents a break while the child remains in familiar surroundings. Of course, establishing such services and centres requires investment. The Treasury review of children and young people is a golden opportunity to address these issues and to make recommendations for next year’s spending review to improve support for families with disabled children. I hope the Minister will consider carefully the issues that I have raised and give this important issue the priority it deserves.
My Lords, I congratulate the noble Lord, Lord Astor, on initiating this very important debate today, and declare an interest as chairman of TreeHouse, an autism education charity that runs a school for primary and secondary school children with autism spectrum disorders in north London. Like the noble Lord, I declare an interest as vice-chairman of the All-Party Group on Autism.
The noble Lord did not mention some of the tragic cases that have arisen as a result of the failure—indeed, absence—of respite care for families with autism, but it is quite clear that tragic cases, such as that of Alison and Ryan Davies, will occur unless these services are provided. It is part of the purpose of today’s debate to lay the ground for the Comprehensive Spending Review in the way in which the noble Lord described.
Autism presents a unique challenge. Children with autism spectrum conditions have fallen through gaps in services, as they do not always fit entirely into one definition of need. For instance, they can fall through the gaps of eligibility for either learning difficulty or mental health services. Sometimes they fall into neither category. The breadth of the autism spectrum and the complexity of potential impairments mean that professionals often have little idea of how to meet the needs of people with autism. Even if we assume that an individual with autism succeeds in overcoming the barriers thrown up to access for an assessment, people with autism often find that the services on offer are inappropriate and inadequate, as the noble Lord described. They are inadequate in terms of quantity or quality, or both.
The noble Lord referred in particular to respite placement. My colleagues at TreeHouse hear from parents all over the country. From the calls and e-mails that it receives, it is clear, and rather alarming, just how many families fight even to get an assessment of need. Once their needs are assessed, they are made to feel lucky if they are given just two hours’ respite per week or even per fortnight. These are families where the child needs care and surveillance round the clock. The child may sleep for only a few hours a night, may have no sense of danger, may be particularly fascinated by open windows or naked flames or may not be able to tolerate routine family activities, such as trips to local shops. The young person may be in need of social skills training in order to help them to access local leisure facilities or social networks, or to access the outside world that their typically developing peers take for granted. The absence of these services makes life a misery, prevents the inclusion of a young person in society and may inhibit his or her chances of long-term independence.
TreeHouse also hears of cases where social services have said that there is no funding assigned or service available to enable a disabled child to stay at home with adequate respite and short breaks; none the less, money is available to support a residential school, or to place a child in care, which is at far greater human and financial cost. That is indicative of the systemic failure to support families of children with autism. It is the notion that, to get anything at all, families must slot into local authority practices and budget categories, whereas social care professionals should be anticipating need and responding flexibly and willingly to families.
Training is vital. Parents with whom TreeHouse is in contact often report that the workforce is not equipped with strategies to support sometimes very challenging young people. Ordinary care staff find it difficult to address the profound communication and behaviour needs of children with ASD. TreeHouse knows of situations that have broken down after only the second two-hour session, where respite workers fail to show up after the first attempt, or when special leisure facilities report that they cannot cope with the young person with ASD. The challenges relate to the undifferentiated nature of current respite services. Often standard respite services are inappropriate. The NAS “make school make sense” survey in particular highlights the under-provision of social skills trainers tailored to young people with high-functioning autistic spectrum disorder/Asperger’s syndrome.
Of course, many parents have had suspicion falsely cast on their parenting, and—even worse—there have been allegations of abuse, perhaps because of the unexpected behaviour of their children or even, perhaps, because the parents draw attention to the inadequacy of the services on offer. What is so sad about such cases is that they set up fear and cynicism among parents who become despairing about social services, frightened to ask for help and scared of being labelled.
I am loathe to portray a situation that is all bleak, but life with autism is not easy. We should have a social care system that provides a proper, effective safety net and lifts temporarily some of the weight of caring for a person with autism. However, I believe that a significant problem has over the past few years been increasingly recognised, at least at national level, and at a slow but increasing level by local authorities. We now have the National Service Framework for Children, which contains a standard on disabled children and their families. We can take encouragement from a number of other initiatives, such as the joint Treasury and DfES cross-cutting review of children's services, which was recently launched at TreeHouse. These, I hope, are combining to create momentum for change.
However, three key points need to be made. First, social care for families of children with autism must be made a priority for funding. As the Disabilities Trust said in a recent briefing, autism funding now often comes from a general pot under a heading such as “learning disability”. It believes, and I agree, that this unique and complex provision should be recognised and that ring-fenced funding should be available. Without this, Government policies such as the NSF simply will not be implemented. Secondly, social care services need to be designed around the needs of individuals with autism and not made to fit into slots created by local authorities. Finally, specialist autism training must become mandatory for every member of staff and decision maker who works in social care. The recent report by Professor Gillian Baird in the Lancet showing that we now have one in 100 children on the autistic spectrum demonstrates that this is a growing problem that we need to tackle as a matter of urgency.
My Lords, I congratulate the noble Lord, Lord Astor of Hever, on obtaining this important debate. I begin by declaring an interest as vice-president of Autism Northern Ireland and as someone with personal experience of the condition known properly as autistic spectrum disorder—ASD. I endorse the points made by the noble Lord, Lord Astor, and plead with the Government to recognise before it is too late that a major and growing problem is facing us. To fail to address the consequences of the huge escalation in autism would be a tragedy.
Forget those who say that the increase derives from a new awareness, because that is simplistic. I started teaching in 1958 and I know what I experienced then compared with what happens now. For some, we are already too late: I refer to those children and young adults for whom there has been no early assessment or early intervention. In Northern Ireland, that situation still exists to a significant degree. There, I regret to say, I come up against the most devious and obstructive administrative attitude imaginable. The bureaucracy is confused, inept and evasive to the point of irresponsibility. From the earliest realisation that is a child is autistic, families are left to struggle virtually alone in conflict with an ill informed system. I intend to illustrate this opinion within the context of Answers that I have received to parliamentary Questions. This is about the lives of vulnerable young children and their families, and it is about time the matter was properly aired.
First, I want to acknowledge one major change for the better. Until recently, autism was categorised as a “mental disability”. To be defined thus was a huge inhibitor to the proper facilitation of those with ASD. But the Secretary of State, Peter Hain, has declassified the condition as such, which has given huge encouragement to many families. However, I should also point out that ASD is not a learning disability and needs its own classification. I quote from the 2001 Review of Autism Research by the Medical Research Council and, in so doing, I define autism more accurately as,
“the name given to a set of neurodevelopmental disorders in … the way that a person communicates and interacts with other people”.
“characterised by qualitative impairments in social, communicative and imaginative development”.
The condition most often becomes noticeable in children around the age of three. Between the ages of three and seven or eight is a crucial time inthe learning curve of a person's life. Language, experience and social awareness are accelerating at an enormous rate. Where there is this inhibitor—autism—the developmental loss can be devastating. Hence early assessment and early intervention are crucial.
In a letter dated 30 June, I was assured by the Secretary of State that:
“Health Boards and Trusts ... are charged with commissioning and delivering local services on a permanent basis to meet the needs of their local population”.
But let us look at what one finds when it comes to children right on the verge of those five vital learning years—three year-olds who show signs of being autistic and who urgently need to be assessed.
In reply to a Question for Written Answer, I was told on 31 December last year that some 686 children in Northern Ireland were waiting to be assessed, some for up to 35 months. Let us think about that. It means three out of those vital five years at the beginning of school life—three years without the necessary one-to-one classroom assistance that can totally transform an autistic child’s life. I am now told that that figure of 686 children awaiting assessment has been revised down to 652. If one can even believe that, we have a reduction of a mere 5 per cent in six months, a rate of resolution that in theory could mean the backlog not being resolved until 2016. How many children’s futures will be blighted in the interim?
On assessment, we find the greatest deceit of all.I ask noble Lords to take note of these dates. InJune 2005, I was told:
“Information on the number of children referred for suspected autistic spectrum disorder assessment and the current waiting times for assessment are not collected centrally and could only be obtained at disproportionate cost”.—[Official Report, 8/6/05; col. WA 90.]
Yet a mere six days later I was told:
“The Department of Health, Social Services and Public Safety’s priorities for action 2004-05 required boards and trusts to establish multidisciplinary diagnostic, assessment and early intervention teams to provide for improved life outcomes for around 200 children and young people with autism each year”.—[Official Report, 14/6/05; col. WA 119.]
If the statistics were not available on 8 June 2005, on what basis were such measures able to be planned and sanctioned over two years earlier, to be implemented by March 2004? Can I be blamed for believing that someone is systematically distorting or concealing the facts? In reality, despite the 2004-05 departmental requirement, two years later only seven trusts, out of four health boards and 18 trusts, have established these teams. I was then told that:
“Multi-disciplinary early intervention teams to deal with autistic spectrum disorders are drawn from paediatricians, psychiatrists, educational psychologists, nurses, early intervention therapists, speech and language therapists, occupational therapists and social workers”.—[Official Report, 20/6/06; col. WA 67.]
Eight separate disciplines are involved, with paediatricians rightly coming first on the list. But I subsequently discovered that in the western board area:
“There is no full-time consultant paediatrician for children with autism”.
The situation in the southern board area is that:
“At present a locum is acting in the position of consultant community paediatrician”.
Why are there such deliberate attempts to deceive me and why is the shortfall denied? Again I shall quote:
“Boards and trusts were required to establish multidisciplinary diagnostic assessment and early intervention teams to improve the life outcome for an additional 200 children and young people with autism across Northern Ireland. This target was achieved by the boards and trusts by September 2005”.—[Official Report, 12/7/06; WA 118.]
But the other facts that were provided deny that.
Throughout all this bureaucratic and administrative chaos, Autism Northern Ireland has for 16 years helped those with ASD by providing advice and support to parents. It has been trying to encourage a co-ordinated approach by the health and education departments but has been constrained and obstructed at every turn. While we at Autism Northern Ireland do not pretend to have all the answers, sadly and through personal experience we know a great deal more than most.
My Lords, I apologise.
This year Autism Northern Ireland will be in receipt of £47,000. That represents 4 pence a day per child, given that some 3,500 children are suspected of having autism. I conclude by asking: is this how we treat the most vulnerable and needy within our society? Is this how the Government want to be remembered, or are they willing to change and accept the need for partnership, proper planning and a realistic approach?
My Lords, my interest in this Question comes as a result of the involvement of a close family member who is a trustee and governor of Prior’s Court School for autistic children near Newbury in Berkshire. I add my thanks to those given to the noble Lord, Lord Astor of Hever, for introducing this short debate.
Understandably, the focus of attention and resources is mainly directed towards those children affected by autism, whereas it is on the whole their families who bear the brunt of the burden of care—both practical care in looking after an autistic child and in navigating through the difficult and unfamiliar world of bureaucracy to ensure that the appropriate type of education, and related funding, is available and forthcoming. Indeed, many parents are forced to resort to home schooling when all other options are exhausted, with little or no opportunity for trained teacher input.
I should like to concentrate on three specific areas, and in doing so will almost certainly repeat points made by other noble Lords. First, there is the difficulty of obtaining continued funding from local education authorities. This is particularly relevant where there is a change in the needs of the child, identified by progressive assessments, which require new or more specialist—and therefore more expensive—provision. LEAs often view these matters in black and white whereas they are of course many shades of grey. Taking an initial assessment as a firm indication of a child’s educational needs for their entire schooling can be a gross oversimplification. This can result in a box-ticking exercise which provides a rigid and unrealistic framework for ongoing education, a point already made by my noble friend Lord Clement-Jones. Parents need LEAs to be much more involved with specialist schools to understand the nuances and complexities of individual cases.
While recognising the financial challenges faced by LEAs, parents often have to resort to expensive legal action to compel LEAs to meet additional costs. In fact, the whole statementing process seems to be designed to make life difficult for parents and to be infinitely less supportive than it should be towards those who are looking after what are often very difficult and disturbed children. Since there appears to be no contingency for reassessment, parents become desperate and often a battle with the local LEA ensues. Have the Government any plans to address this unsatisfactory situation?
My second point is the difficulty of obtaining disability living allowance where the criteria for those on the autistic spectrum is not made as clear as it should be. One parent of an 18 year-old told me that in her experience the service had deteriorated markedly since job cuts were made in the Department for Work and Pensions last year. Is there meaningful monitoring of the advice callers are receiving and is the Minister satisfied that the system is working properly, particularly in the light of the increasing numbers likely to need this benefit in the future? Perhaps at the same time the Minister might update the House on the current take-up of DLA in general. At this point I should declare an interest as a recipient of this benefit myself.
Finally, I turn to a very different point: the lack of emotional and psychological support for parents when autism is diagnosed in their child. Typically, autism is diagnosed from the age of three years old, as we have heard. For parents, such a diagnosis can be devastating and currently there is no substantive psychological support to help them come to terms with their child’s newly discovered condition. It is only when they come into contact with other families in a similar situation that they get in touch with support groups, which can help them accept their child’s condition and the related implications. Are the Government considering ways in which families of autistic children can gain access to counselling support at the time of diagnosis? Furthermore, can the Minister say how much additional funding is available for self-help groups for families who find themselves in this situation?
To illustrate the point, in a recent conversation I had with the parent of an autistic child, she—not I—used the word “changeling” to describe her child. If a child developed a more life-threatening condition there would be sympathy from official agencies, but those whose children change from bright, outgoing individuals when they are toddlers into withdrawn and difficult, albeit greatly loved, children, tend to receive no sympathetic support.
It is estimated that there are more than half a million people in the United Kingdom on the autistic spectrum and a recent report claims that the number of children affected in this country is one in 100, a figure higher than previously thought. If this incidence was pertinent to any other childhood illness—for example, chickenpox—it would be treated with much greater urgency. Even before this latest estimate it was calculated that 2 million people were directly affected by the impact of autism, many of these family members who are often the invisible sufferers. This number will grow exponentially with the growth in the incidence of autism.
It is to be hoped that the Government will continue and, indeed, reinforce their commitment to monitor all aspects of this condition in the light of this alarming increase, including research into its causes, financial support for sufferers during their lifetime and last, but by no means least, proper support and help for the families concerned. I await the Minister’s reply with interest.
My Lords, in introducing the debate, the noble Lord, Lord Hever, has put before the House an individual and particular set of problems, but the pattern of the problems is one which is incredibly familiar to anyone who has dealt with special educational needs and disability rights issues, especially in their initial stages. To someone who was in the right place at the right time for the mainstream acceptance of dyslexia when it was diagnosed, much of what has been said here about many of the problems sounds incredibly familiar to what was said then. The references to the discovery and magnitude of the problem are a replay of what happened before.
I was scanning my eye over a list of myths that I had taken from the National Autistic Society website when I came across a reference to Asperger’s syndrome—which is a part of the autistic spectrum disorder—affecting only middle-class parents. I can guarantee that the reason for that myth is that, at the moment, the middle class is vastly over-represented because middle-class parents have the education, money and time to make a thoroughgoing nuisance of themselves and get some help. Effectively, we politicians have not applied enough pressure to gear-up the system—and all parties must share equal blame for this—to make it accessible to people without education, money and a background of dealing with bureaucracy and realising that if you kick it hard enough in the right places it usually does what you want in the end. I am afraid that is rather the experience here. Such people are not being assessed early enough. Effectively, we have got to carry on rattling the system until we get people in the right places to recognise the early symptoms and to give assessment and support.
The fact of the matter is that if we do not do this we will have far greater ongoing costs further down the system. A failing child will become a failing adult and end up in institutional care, having first probably broken the health of a parent. As has been referred to, even respite care is not there at the moment. If we do not get support to them early enough, some people will become institutionalised and spend their lifetime not being able to support themselves. If we carry on as we are, it will take a very long time to put this right. We must apply pressure to make sure that the existing support structures are greatly expanded. The only good thing that can be said about this is that other people have been down this path and so we have a rough idea of what should happen next.
Diagnosis of autistic spectrum disorder—not the easiest thing to say in a hurry—should be seen asan integral part of the training and awareness programmes. In the course of the education Bill there has been much talk about making sure that in the school system there is sufficient training in special educational needs awareness. I have always felt that awareness throughout the system is probably much more beneficial than having a few well-trained specialists because in that way you can see things coming and get the intervention in quickly. If there is only a fairly low-level but early enough intervention to provide social skills, for instance, it may well allow a person to function within the mainstream of society, albeit with help, for the rest of his or her life. If you do not get in that early intervention, you are not going to be able to do that.
When the Minister replies, can he tell the House what the Government think are the actual numbers of people who fall within the spectrum? Do the Government think that the number is rising in frequency in the population, or is it merely that we are only now spotting it? The noble Lord, Lord Maginnis, shakes his head but the question is not for him; I want to know the Government’s attitude. Are the Government taking up the issue? Where is the argument going? If the Minister does not know, I look forward to receiving a letter from him, as will the rest of the House. We have to find out what the Government are thinking in order to provide the support necessary to make sure that government works and that the structure comes through.
Returning to the issue of myths, what is the Government’s attitude towards telling people how to deal with autism and explaining it to parents? What advice is being given? The website page referred to the “Rain Man” genius—I think “savant” is the correct expression. Are the Government trying to deal with all the myths? Again, this is very typical of what happened with dyslexia. For example, the myth was that all dyslexics are brilliant because Leonardo da Vinci was. I have never followed the reasoning myself, but there we are.
Can the Government say what sort of training they are giving to enable people to explain autism? What are they doing, particularly, for nursery school teachers, who seem to have the biggest chance of spotting it earlier? What type of advice are they giving? Can the Minister give an indication of the kind of advice they are giving to people who develop training facilities? What is the state of planning for greater numbers of specialists to deal with this?
I look forward to the Minister’s answer but I am afraid that we will have to come back frequently—and bring our friends with us—in order to get Governments of all shapes and sizes in the future to act further on this. The Minister should take this issue away, talk to his friends in other departments and let them know that we are all going to watch—and that we are not going to go away until we get a little bit more action.
My Lords, no one is better qualified than my noble friend Lord Astor to speak on this extremely vexed and emotive subject. I congratulate him on having summarised so well the problems that all too often beset the families who struggle to live with autism in their midst. I completely agree with all that he and other noble Lords have said about the lack of adequate support services for autistic people and their carers.
The National Autistic Society has a great deal to say about those shortcomings, which nowadays apply right across the country. As an Opposition spokesman, I am regularly contacted by anguished parents whose attempts to obtain the correct help for an autistic child have continued for many months and sometimes even for years. Not infrequently, those efforts end in disappointment and failure. Lest there be any doubt, autism is no longer an issue that can remain on the fringes of policy-making. It is a mainstream and very serious concern; it needs confronting, and it requires resources.
What do we need to be doing? My noble friend mentioned a number of practical steps, such as making sure that needs assessments are available to all those who require them—they are not at present—providing more and better respite services, and appropriate childcare. I often think that one of the worst aspects of living with an autistic child is the isolation. The need for people to feel that they are not alone in having to contend with the sometimes unbearable stress of daily living in such circumstances is very real.
Parents desperately want their predicament to be understood; they desperately want advice and recognition. The trouble is, the number of professionals sufficiently qualified to provide such help is inadequate, and teacher training does not include enough about children with disabilities. The noble Lord, Lord Addington, was absolutely right about that. Indeed, so widespread is the ignorance about autistic spectrum disorders that if a child presents at school with behavioural abnormalities associated with autism, it is often the quality of parenting that falls under the spotlight, rather than the needs of the child. Instead of understanding and help, parents find themselves referred to the child protection unit of social services. Even where a child has been statemented for special educational needs, local authorities will often fight tooth and nail against providing the support that is needed. I agreed wholeheartedly with the noble Baroness, Lady Thomas, on that topic.
Research by Brunel University involving 750 parents found that most of them viewed dealing with LEAs as a confrontational exercise and that the whole process was a source of extreme stress. Parents are stressed enough without that. We really should be worried by research findings such as those.
The Government say many of the right things about the importance of meeting the needs of children with SEN, but the reality is quite different. A few days ago, the Education and Skills Committee in another place published a report. Its view, which I share, is that special schools are invaluable for many pupils with behavioural and learning difficulties. Yet the number of special schools went down by 7 per cent between 1997 and last year. This reduction has occurred at a time when demand for SEN services has gone up dramatically.
The committee made several trenchant criticisms of the Government: the lack of clarity about what is meant by the word “inclusion”, a fundamental confusion which has directly resulted in the closure of special schools; the lack of clear strategic direction about the value and the role of special schools; and the complete failure to address the flaws in the SEN system identified by the Audit Commission in 2002 and by Ofsted in 2004. The Audit Commission and Ofsted both pointed to serious inconsistencies in provision, inequality of access to schools, over-complexity in the statementing process and poor outcomes. Here we are in 2006, and we are no further forward in these areas.
The committee says that where good practice exists in local authorities, the level of parental satisfaction improves greatly. That is wonderful, but if it is so, the obvious questions to the Government are: who is spreading this best practice, and if it is not happening, how best should it be made to happen?
Again, the White Paper Our health, our care, our say says a lot of good things. It speaks of local councils and the NHS working together to provide joined-up care plans for those who need them. It speaks of offering support for carers, including emergency respite care. How will those good aspirations be targeted towards children and young people with autistic spectrum disorders, and what precisely is being done to implement them? We are living in a time of real financial stringency in the health service and local government. But if we believe that families should be entitled to respite care when they need it; if we believe in streamlining the statementing process; if we believe in placing weight on the preferences that parents express in favour of special schools, then these things need defining explicitly and they need to become universal.
In the longer term, what will be of most benefit to families and those afflicted with autism is getting closer to the science. The causal mechanisms behind ASD are not known. I have seen a recent Written Answer about research funded by the MRC in this area. How much of this work is directly related to the possible causal mechanisms and to treatments which may ameliorate the worst manifestations of autistic behaviour? This work desperately needs to be done.
I am sorry to say that the controversy over the safety of MMR, which I find deeply regrettable, has tended to overshadow the more open questions that we should be asking. What, precisely, is damaging the brains of young children at an early age? Why are the numbers of autistic children going up as steeply as they appear to be doing? What can we do to relieve sufferers and their families from the extreme distress and despair that they feel? Until we make autism a mainstream health issue, we are bound to see a repeat of tragedies such as that of Alison Davies and her son. The lack of support, the absence of advice and the dearth of understanding cannot be allowed to continue.
My Lords, I am sure we are all grateful to the noble Lord, Lord Astor, for prompting this important debate. I know that the noble Lord has personal experience, and I pay tribute to the work he has done through his involvement with the All-Party Group on Autism.
From my time as a director of social services, I understand and appreciate that having a child with autism can add phenomenally to the normal stresses and strains of family life. For children with autism, the world can appear a mystifying and frightening place. They can react with challenging behaviour so that their parents can barely take their eyes off them for a moment. I understand these issues; supporting autistic children and their families is a responsibility that the Government take very seriously indeed.
A number of noble Lords asked how many children we are talking about. We recognise that the size of the cohort of children with autism and their families seems to be growing. Fifteen or 20 years ago, the standard prevalence rate for children with autism was thought to be four to five per 10,000. A report we commissioned in 2001 from the Medical Research Council on the epidemiology and causes of autism found some agreement with recent prevalence estimates of 60 per 10,000 of children under eight with autism spectrum disorder.
I am aware of the research mentioned by the noble Lord, Lord Clement-Jones, undertaken by Dr Gillian Baird—whom I know personally—published in the Lancet last week, on the prevalence of autism spectrum disorders in children in the south Thames region. This is an important piece of research: it found a prevalence rate of around 40 per 10,000 for autism and 77 per 10,000 for the full spectrum. This is much closer to the prevalence rate that the National Autistic Society has suggested.
The south Thames study suggested that much of the increase in the number being identified on the autism spectrum can be put down to greater awareness, better identification and a broadening of diagnostic criteria. However, it looks as though this is a true rise in incidence, a possibility which cannot be ruled out. I am sure that this new prevalence information will be helpful to colleagues in the Treasury and the DfES who are conducting the cross-cutting review.
Like other noble Lords, I am aware of some tragic events involving parents and their autistic children, and I take this opportunity to express my heartfelt sadness and sympathy to all those involved. We must ensure that parents of children with autism can access services in their own right and that their needs are properly considered. I think particularly of the mental health problems that can be triggered by caring for an autistic child and the feeling that one is coping alone with no support, points to which a number of noble Lords have drawn attention. We are trying hard to make sure that services are in place to help. Community mental health teams offer specialist assessment, treatment and care to adults with mental health problems in their own homes. They may also provide a whole range of community-based services, or be complemented by other community-based teams providing specific functions, such as those of assertive outreach teams. Parents need to know that the services exist and feel able and comfortable to use them.
In 2001, we published an evidence-based guideline to help GPs and other health and social care professionals know more about the most effective treatments for particular conditions. We also published in 2001 a booklet for service users and carers, Choosing Talking Therapies?, to help them know which questions to ask.
We have embarked on a new programme to provide more effective and timely access to psychological therapies by connecting interventions currently or potentially available in the workplace, in primary care and other community resources, and to provide rapid access to more specialist services for those who need them.
We are working on two demonstration sites in Doncaster and Newham, and on a network of smaller regional projects in this area, which will bring together key programmes in the NHS, the voluntary sector and local employers to test various models that could be implemented nationally. They will be of help.
We have learnt from parents that a break from caring is very important to them, as a number of noble Lords have mentioned. That is why we introduced the carers grant. It is worth £185 million in 2005-06. Children's services account for approximately 20 per cent of the grant, including services for carers of children with disabilities. As parents, we all know that however much we love our children we would sometimes welcome a break from looking after them. We also know how important an uninterrupted night’s sleep can be. How much harder that is for the parents of a disabled child who demands much greater effort and energy from his or her parents and where alternative care or babysitting arrangements are harder to come by.
We know that some of the children most likely to be waiting for short-break services are those with autistic spectrum disorders. The report in March from the Shared Care Network, Still Waiting, reconfirmed this. There are many reasons for the difficulty in recruiting short-break carers, but we are making some progress. The proportion of children who are waiting to receive services has decreased since 1999: it is now about a third rather than a half. I do not want to claim that that is a great achievement, but it is a movement in the right direction. This is far better than it was, but it is far from being good enough. DfES recently published the National Audit of Support, Services and Provision for Children with Low Incidence Needs, which included children at the severe end of the autistic spectrum. It confirmed that family support and respite care are the biggest issues that need to be addressed for families of children with autism.
However, it gave some examples of good practice where things are working well. For example, a Northamptonshire local authority provides an autism family support team of five which works in the family home and community outside nine-to-five hours and gives access to short breaks of three to four days. We need to build on local examples of good practice such as this and have all parts of the country providing these services. Northamptonshire and others have shown that it can be done. It is about the will which exists at the local level to make some of these things happen.
What is required is more and better partnership work between professionals and agencies to help families. A number of noble Lords have drawn attention to this. A good example of how these partnerships can improve matters is the DfES-funded West Midlands SEN Regional Partnership, which has focused on autism. Over the years, the partnership has mapped provision for autistic children and their families in the region, produced a parent information pack to support parents and, last month, a training policy and framework for those in education, social care, health and the independent and voluntary sector. As a number of noble Lords have said, more professionals and more agencies need to understand the needs of parents of children with autism and provide services that meet people’s needs, rather than trying to squeeze people into the framework of services that are available. Areas such as the West Midlands have shown that one can make progress where people choose to work together. We need to encourage that.
The noble Earl, Lord Howe, drew attention to research. We accept that good quality research is critical. Following the Medical Research Council’s report which I mentioned earlier, my department gave £2.5 million to the MRC for autism research. With further funding from the Chief Scientist’s Office, Scotland and the MRC, this amount has been topped up to more than £3 million. Six major research projects are now funded. One of them is a£1.3 million pre-school autism communication trial. This is the first large-scale intervention study of its kind and it will look at the effectiveness of a treatment to enhance parent/child communication and the social and language development of the child. It is too early for there to be lessons to learn from these projects, but we are keen that research in this area informs policy.
An autism research co-ordination group has been established, hosted by DfES, which will publish its first annual report at the end of this month. The aim of the group is to keep Ministers aware of current research activity and its policy implications and to highlight gaps in current research activity.
There is now a raft of policy initiatives across government for improving services for children. Noble Lords have drawn attention to some of them. One of the exemplars published under the National Service Framework for Children was on autism. It set out an optimal pathway for a boy starting at age three and moving from initial concern, through multi-agency assessment and diagnosis, an ongoing family support plan and early educational intervention, and on through transitions from primary to secondary school and into adult life. Led by the local primary care trust in Islington, a project has been running to implement parts of the exemplar around clarifying the diagnosis and identifying needs for the families. We need to learn the lessons from what has been a largely successful project. This is a good example of that exemplar being tried out on the ground.
The Early Support programme is a joint DfES, Sure Start and Department of Health initiative. It is the central government mechanism for achieving better co-ordinated family-focused services for young disabled children and their families. The programme produced a series of disability-specific booklets, including a parents’ guide on autistic spectrum disorders in 2004. This was produced with a great deal of help from the National Autistic Society and a group called the Parents Autism Campaign for Education, which is now part of the TreeHouse Trust, of which the noble Lord, Lord Clement-Jones, is the chair of trustees. He has done a great deal of important work in this area to which I pay tribute. The guidance gives information to parents about autism and getting help, and it is available from the DfES Publications Centre. We know that more than 46,000 copies have been distributed and are being used.
We have increased the amount of money being spent on children’s social services. I do not have time to go through a great deal of this, but I draw attention to the DfES’s provision of funding to Contact a Family, a national charity providing support, advice and information to families with disabled children. This has been of great help to Contact a Family, which has been able to double the number of families it reaches to 18,000. An external evaluation found that 99 per cent of respondents were satisfied with the service.
I am not in a position to respond to the important points raised by the noble Lord, Lord Maginnis, but I shall draw them to the attention of my right honourable friend the Secretary of State for Northern Ireland. This has been an important and valuable debate. I shall take away the points to which I have not been able to provide an adequate response and write to noble Lords.