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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.
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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.
2.26 pm
The Minister of State, Department of Health (Lord Warner): 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.
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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.
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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
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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
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Education and Inspections Bill
2.39 pm
House again in Committee on Clause 40.
Baroness Buscombe moved Amendment No. 164:
“( ) The authority shall ensure the parents of a child for whom a statement is maintained under section 324 of Education Act 1996 are given sufficient advice under subsection (1A) about the possible options open to them, including provision in both mainstream and special schools.”
The noble Baroness said: I rise to speak to a number of amendments on children with special educational needs—Amendments Nos. 164, 254 and 255. This cluster of amendments drives straight to the heart of an issue that is close to many of our hearts. We have already debated the broad implications of special needs education. Indeed, we have also touched on the policy of inclusion that seems to have been adopted across the country, whether deliberately or not, but I wish to return to it briefly now as the real on-the-ground effectiveness of special educational needs provision is in serious need of review.
I was saddened but not surprised to read that SEN children are nine times more likely to be excluded than children without statements. The Committee will agree that that is not due to the inherent bad behaviour of children with SEN; rather it is largely due to the lack of provision being made for those children. Across the country there are some truly fantastic schools doing a wonderful job, but there is no way that we can claim that children with special educational needs are being provided for with any consistency.
There are two major problems: first, the complete lack of clarity on inclusion; and, secondly, the statementing process. Inclusion poses one of the great educational quandaries of this century. The number of children with SEN rises year on year. This situation will not disappear. School admissions policies are being confused due to the provisions of the SEND Act 2001. Under that Act, school governors and teachers,
- “may be at risk of prosecution if they refuse a school place to children with special educational needs, even if the school does not have sufficient resources to provide an appropriate curriculum”,
according to the Cambridge University paper, The Cost of Inclusion.
There is a clear confusion here between existing legislation and the government policy outlined by the Minister the week before last, where we learnt that the Government have a child-centred policy on SEN. LEAs across the country are under the impression that they are under a duty to enact inclusion in a structural sense by pushing children into the mainstream. Those authorities could be said to have mistaken the concept of inclusion for a structural duty rather than the
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The next consideration must be for the effective inclusion of those children without special needs. Amendment No. 254 makes no assumption about where a child should go. It does, however, state clearly that children without a statement should ordinarily be placed in a mainstream school. I emphasise that this amendment is tabled in a constructive spirit. We on these Benches, and in the Conservative Party as a whole, have been thinking very seriously about the SEN issue. We have a special needs commission looking into potential solutions for improving statementing, and for somehow separating the allocation of statements from the allocation of resources without having to give any one body unfettered powers to make financial grants. Subsection (3) of the amendment states—along the lines of my party’s SEN interim report published on 29 November last year—that a national funding agency would allocate funds to statemented children on one of a spectrum of categories. A statementing system should not vary from local authority to local authority. Subsections (4) and (5) take into account the wishes of the parent, and subsection (6) confirms the involvement in SEN provision of CTCs and academies.
Amendment No. 255 would replace a provision left removed by this Government from the 1996 Act for reasons that have never been clear to me. This is not a statement of policy; I merely hope that the Minister will take an active part in this debate and perhaps give us an idea of the Government’s plans for SEN in the next few years. There is clearly much more work to be done. Today I hope to achieve not a statement of a new policy on SEN but a commitment from the Minister to reconsider the problem of SEN.
This is a complex issue about which we are thinking hard. I leave the Committee with the following thoughts. The Priory Education Services representation to the Education and Skills Select Committee of 21 June had a pragmatic and commendable approach to SEN students. It says:
“It is not enough for us to describe ourselves as ‘good’ and excuse the lack of measurable outcomes because ‘our students do not have the ability to pass exams or achieve other externally verified results’. We must live in the real world, where education standards do matter and will influence the young person’s subsequent life and achievements”.
That is right. These children must be given the chance to flourish, to participate in and contribute to the real world. I beg to move.
2.45 pm
Lord Dearing: I wish to speak to my Amendment No. 179, which follows on from the noble Baroness’s amendments. My amendment about special educational needs has two parts. The first part would provide that those who take decisions on whether children should
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“There is an inbuilt conflict of interest in that it is the duty of the local authority to assess the needs of the child and to arrange provision to meet those needs and all within limited resources. The link must be broken between assessment and funding of provision”,
which is what my amendment is about.
I describe the second part of the amendment as the Velcro part of the amendment. It would provide that children with a statement of special educational needs should be allocated funding on an individual basis, and that it should go with them wherever they go. It is their statement and their resources. In proposing that, I had two objectives: first, that a child with a statement is welcomed rather than seen as a burden because the funding to support that child is made available; and, secondly, to ensure—in saying this I am conscious that schools are honourable places—that the money allocated to that child with special needs is spent on them.
In making that point, I note that Ofsted, in its evidence to the Select Committee, said that there was evidence that some delegated funding for schools was not being spent on special educational needs. I further note that the Minister, in his evidence, said that it was,
The Select Committee recommended:
“The fundamental problems in the statementing process that prevent funding from following the child should be resolved as a matter of urgency”.
The Velcro-ing of the statement to the child is particularly helpful if the child moves between local authorities and if it is to the child’s advantage to spend part of his time in one school and another part in another school or in a pupil referral unit. It enables parents who feel that a school is not serving their child well to secure their transfer to another school without that school having qualms about whether the funding is available. I do not expect the Minister to agree to those two amendments right away, but I hope that he will accept that these are the kind of changes that have the strong support of the Select Committee and other quarters of the House.
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