§ 11.7 p.m.
§ Baroness Uddin
rose to ask Her Majesty's Government how they will respond to the call for 2002 to be declared Autism Awareness Year.
The noble Baroness said: My Lords, I start from the premise that all hours are good hours to influence governments. Last year, at the request of Ivan and Charika Corea, I was persuaded to place this Question before your Lordships' House. It may easily have been 100 years since then. Never has the word "autism" been more visible in recent years. What difference has all that public talk made to the lives of those who are autistic or to their families? Has it made diagnosis and assessment easily accessible? Has the idea of seamless, joined-up services become a real possibility for many more families?
I am pleased to add my voice to the call for immediate action following the debate in the other place in January. It is estimated that there are 520,000 autistic people in our country. Some organisations put the figure closer to 1 million. Add their carers and we are talking about a huge body of public opinion.
According to the Medical Research Council's report, autism spectrum disorders affect many more people than is recognised, including approximately 60 per cent of children under the age of eight. Numbers are increasing all the time. The MRC noted that,the prevalence of autism in the adult population is not known".This year, the National Autistic Society celebrates 40 years of its survival. The Autism Awareness Year campaign generated by the NAS, alongside 100 partners, has made a mark on the public with an effective advertising campaign. The work of the NAS has been strengthened by the formation of the All-Party Parliamentary Group on Autism.
The idea of autism year was launched by Ivan and Charika Corea from Buckhurst Hill and declared by the British Institute for Brain Injured Children and the Disabilities Trust. The Corea family decided to launch the awareness campaign because they were exasperated with their journey of struggle and tribulations to secure services for their son Charin. Their motivation and aim is to facilitate independence and dignity for Charin—something that we take for granted for all our children. Hearing their story made me disheartened that we were still so far from achieving services for children and adults with autism. I salute Ivan and Charika Corea and their MP, Linda Perham, aided by the Disabilities Trust and the BIBIC, for their dedication in the past year.
134 This is the most difficult few minutes of my life. It is more than 20 years since the word "autism", or the question of it, entered my mind when my son Shamim was just two years old. Fed up with hearing platitudes such as, "He will speak soon", and, "Some children are really slow", I was forced to consult hooks in the library, and I accidentally came across the word autism. I subsequently read a number of books which described the experiences of those who were often from middle England.
As noble Lords may have noticed, I am speaking with my heart in my mouth. Pain sears my soul as I remember my struggle with child health clinics and education departments from 1980 to 1992. Ultimately, they all had the better of me and I simply gave up, retreating home with my son. I realise now that, in articulating my child's needs, I was behaving like one of the writers of the books I had read. For those in the caring professions, it was most unacceptable to accept that I, an Asian Muslim woman, could know anything about my child's needs. The fact that I questioned their judgment became our struggle over and above my son's need.
What was striking was the professionals' hurtful indifference to the idea that I understood my child and wanted the very best for him. I do not know whether it was because of my colour, my culture, or whatever, but I was taunted for my opinions and wishes. My family's experience can be added to that of h undreds of thousands of people who have struggled to access health, education, speech therapy and respite care. As carers' daily struggle to live beyond autism is so all-embracing, equality and human rights issues affecting them are often not addressed.
While seeking education for my son, I had to go through the jungle of assessment, analysis, prejudice and bigotry. Contrary to the Education Acts, my request to have my son placed in an ordinary school was frowned upon and denied. Retrospectively, I cannot explain their reluctance to give us a hearing. We were often made to feel responsible for our child's condition, whatever it was. It was also implied that I was the biggest obstacle to services being provided to my son. I was too often seen as demanding—asking for inclusive education was like asking for the moon—and it was thought that I was not coming to terms with his disability. After many years, I now know that my experience was not unique. I thank God that that form of paternalism can now be legally challenged by parents.
Such experiences are repeated too frequently. Parents describe prolonged struggle with institutions and battles with professionals who refuse to listen to parents, despite the fact that there is a legal framework to support the provision of those services. In practice, however, provision is frightfully inconsistent and uncoordinated. Parents who win the battle for their children are few and possess special attributes. Very often, they are also benefactors of the postcode lottery with which we have become so familiar. I humbly point out that, for parents of my background colour and culture, negotiating access to services is more often a miracle than a routine outcome. That is why, 135 despite being articulate parents, Ivan and Charika must continue their struggle, as I had to do more than 20 years ago. We hope that the Race Relations (Amendment) Act 2000 and implementation of the Disability Discrimination Act 1995 can help in such cases.
There have been successful cases in which parents have received all the care that their children need and deserve and those children have gone on to experience the very best that our system offers. However, there are many more Shamims and Charins, and for them and their parents the postcode lottery of care has become unacceptable. Racism and discrimination are often a double whammy with which parents must deal. Parents with whom I have spoken say that children with the misfortune of having their case argued by an ethnic minority parent are bound to receive a lower standard of care and attention. Surely that has to stop. We cannot allow parents to continue believing that that can happen. Too many parents face an uphill struggle to ensure their child's right to a life of dignity and they should not have to face the added burden of prejudice.
I welcome the possibility of government guidance on the issue. We have the opportunity to set standards within a national framework. Such standards must deal with defining, developing and delivering services from early diagnosis until the appropriate interventions have been made. They must also acknowledge the great unspoken scandal for autistic children and adults: the grossly inadequate availability of speech therapy. The gift of assisting communication is so fundamental and yet so many children are deprived of this provision. Therefore I welcome the fact that the Royal College of Speech & Language Therapists is working with the Department of Health on how to meet the new demand. The chief executive, Karnim Gadhok is also keen to gain financial support for the implementation of the clinical guidelines to improve competence and practice in the profession.
We need to enable people with autism to maximise their quality of life and functioning and to reduce social exclusion in the different context in which they live, in relation to family, community, education, peers, employment and independent housing. There are issues regarding resources and funding to facilitate that, dealing with transition phases at different ages. I believe that if some of the resources made available for the subject of the previous debate were made available for autism, many of the problems would be reduced.
In the past few months noble Lords will have noticed that the issues that have been raised in connection with autism have not centred around education and other service provisions. I am concerned that the discussion on MMR has deflected attention away from the reality of people with autism and their carers. The issue of MMR must not be allowed to consume or sideline the debate and let authorities off the hook of ensuring that care needs are given equal status.
136 I attended a recent gathering to view a video on Autism Awareness Year, launched by the Disabilities Trust. A number of parents' experiences were brought to our attention. In the video Ivan and other parents spoke about autism being not only a lonely business but also an expensive business. Parents talked about re-mortgaging their houses and taking out loans and overdrafts to pay for the needs of autistic children and adults, which can include taking them abroad.
I want to reiterate the parents' call for the Government to consider an increase in the disability living allowance, the carer's allowance and exemptions from the massive increases in council taxes to help ease the financial burdens. Our gratitude goes to the stalwarts in this movement: my noble friends Lord Ashley and Lord Morris and the noble Lord, Lord Rix. They have continued the campaign on these issues for people of all disabilities. I am also grateful to our Prime Minister and to the most reverend Primate the Archbishop of Canterbury for lending their support.
Noble Lords will be pleased to hear that the call for this year to be designated Autism Awareness Year has gathered its own momentum, including the debate in the Commons and in the Scottish Parliament. Faith communities have also been involved in mosques, temples, churches, gurdwaras and synagogues praying for the 520,000 autistic community during the month of prayer for autism in January.
On 10th February, 600 people attended a special service to mark Autism Awareness Year at St Paul's Cathedral in London. The British Institute for Brain Injured Children and the Disabilities Trust organised a major strategic conference on autism in 2002 held at the Kings Fund Centre and attended by parliamentarians, health and education professionals and the voluntary sector. I also look forward to the conference on ethnicity and autism to be organised by Autism London.
Urgent implementation of a national strategy on autism is required, covering education, social care, health, and the criminal justice system. Such a strategy must include central and local government, NGOs and parents. It should begin with immediate scoping of current practices. I believe that we must also look at good practices that are available internationally.
I ask the Minister to consider setting up a task force on autism to look at those issues. Not long ago a working party was set up to look at the subject which affected less than 200 men and women and we took a year to examine the issue. I believe that 500,000 autistic people deserve at least that much attention. Such a task force should examine services, existing provisions, workforce issues, research and training.
The issue is a vast ocean and I start at the foot of a stream. I hope that this debate creates the possibility of change. We want action now. Parents are prepared to chain themselves to the parliamentary consciousness to let noble Lords know that the autistic community has been silent too long, but no more.
§ 11.20 p.m.
§ Baroness Blatch
My Lords, I thank the noble Baroness, Lady Uddin, for securing a debate on the important subject of autism spectrum disorders. I congratulate the noble Baroness most warmly on her recent Gunawardena saward for outstanding service to autism. Her speech today has let us know how passionate she is about the issue.
The debate takes on a special significance in this Autism Awareness Year. The campaign enjoys great support. The National Autistic Society, the Disabilities Trust and the British Institute for Brain Injured C'hildren have combined to promote and support this special year, focusing on all the issues relating to autism spectrum disorders. I shall concentrate predominantly on educational provision for children with special educational needs and in particular those with autistic spectrum disorders.
I do so agree with the noble Baroness, Lady Uddin, about the impressive work done by Charika and Ivan Corea. They have worked tirelessly to raise the awareness of autism and related conditions. The dedicated Autism Awareness Year came about because of the energetic and relentless efforts of Charika and Ivan Corea. Their interest began following the diagnosis of their son Charin as autistic with the debilitating experience they had when fighting the system for appropriate support.
I have been privileged to attend a number of special events, including a service in St Paul's Cathedral and a day conference held at the King's Fund Centre by the British Institute for Brain Injured Children where professionals, politicians, volunteers, parents and friends of young people with ASD came together for a day to contribute to and learn from many thoughtful presentations. As the noble Baroness mentioned, there was the launch last week of an excellent promotional video which features autistic children, adults and their families, as well as professional practitioners.
The Parents Autism Campaign for Education (PACE) carried out a survey which makes sobering reading. All too often the energies of parents are sapped by trying to secure appropriate educational provision for their children. The PACE survey reports that a third of under-fives and 20 per cent of over-fives received no special educational needs provision funding. The survey also highlights the lack of consistency of provision across the country. It is often referred to as the postal lottery.
I piloted the Education Act 1993 through this House. A major part of that 1993 Act provided for a special educational needs tribunal to allow parents—I emphasise the words "as a last resort"—to have their grievances heard. The Act also established a code of practice which was designed to bring about a systematic approach to providing appropriate education and hence greater consistency of provision.
What I find so depressing almost a decade later is that parents still find a lack of consistency and poor coordination, especially in the area of funding, and excessive use and even abuse of the Special Needs Tribunal. All too frequently one hears accounts of 138 parents on whom there has been a war of attrition. The problem is particularly acute for parents of autistic children. It is a fact that the incidence of autism is on the increase and, to state the obvious, children with autism who are neglected during the early years will prove to be very costly to the community in their adult years.
I give an example. Mrs Loxley Blount is the mother of David, a bright but dyslexic and autistic young boy with resultant complex learning and attentional difficulties. From the time David was three years old, his mother has been fighting Barnet Council for his special needs to be met. David is now a young teenager and still the fight goes on. Time does not allow me to catalogue the long and tortuous effort made by Mrs Loxley Blount to secure justice for David. However, it is unacceptable that parents of such children who face enormous challenges at home should have to expend such time, energy and in many cases money in order to secure the appropriate support for their children. The emphasis of the 1993 Act and subsequent Acts which update the code of practice and provision for special educational needs is on early intervention. The importance of early intervention cannot be overstated.
I referred earlier to a possible abuse of the tribunal system. It has been the experience of many parents that local authorities that are themselves under financial pressure will often delay responding to the pleas of parents. In desperation, parents in turn eventually resort to the tribunal, and just before the tribunal hears the case—surprise, surprise—the LEA finds a specialist place for the child. That causes much distress and too much unnecessary suffering.
As I have said, the tribunal was always meant to be a last resort. I agree with at least one respondent to the PACE survey, who said,The tribunal process was costly, stressful and risk). Parents should be spending time with their children, not involved with legal battles".Another issue of concern continues to be the lack of detail and quantification of provision in educational statements. For example, if a child requires speech therapy and the frequency of speech therapy sessions is not specified, all too often the child receives perhaps one session per week, which, though wholly inadequate, technically meets the terms of the statement. I know that this matter has been addressed by the Government in recent legislation. However, the most recent information that I have from those concerned with special educational needs is that the latest guidelines are not helpful. Unless the good intentions of the legislation, which was hard fought for by me and other noble Lords in this Chamber, are made a reality for parents, progress will not be made and children will continue to be ill served.
The Royal National Institute for the Blind recent1), wrote a paper which I believe applies to all children with special educational needs. It said that it was deeply concerned that disabled children's educational entitlements are being undermined now through the dissemination of a special educational needs toolkit which undermines the law on quantificatton of support in a statement and contains thoroughly 139 misleading guidance on meeting the needs of visually-impaired children; and I would also include children with autistic spectrum disorders and other disabilities.
Many of us, including parent groups and a host of organisations, fought hard to persuade the Secretary of State to remove the ambiguous wording on specification and quantification from the revised version of the special educational needs code of practice. The Secretary of State responded positively and reinstated guidance on the need for statements of special educational needs to contain specific and quantified requirements relating to provision.
However, Section 7 of the special educational needs toolkit, entitled "Writing a Statement of Special Educational Needs", seems to mark a significant step backwards. For those children with low incidence needs, the toolkit is a potential disaster and likely to lead to a growth in the number of tribunal cases. The guidance to local education authorities contained in Section 7 is confusing, misleading and ill informed.
Section 7, which gives practical guidance on how to write statements, goes far beyond the code and existing case law in suggesting when local education authorities may be justified in refusing to quantify special needs provision. It states:LEAs are required to be specific about provision. Provision should normally be quantified, for example in terms of hours and frequency of support, but there are times when some flexibility needs to be retained either to meet the changing needs of the child or to allow for appropriate and alternative responses from within the school to reflect particular class or school arrangements".John Wright of IPSEA said:This is so general as to undermine completely both the requirement in law that provision be specified and the guidance in the code and that normally it be quantified".Only when the needs of a child are properly assessed and are both specified and quantified in detail will real progress be made. As the noble Baroness, Lady Uddin, said, early intervention is the key. No parent should be made to wait months, even years, fighting to secure provision for their child. It is also important that there is greater co-operation and co-ordination between health, education, social services and other relevant provision in relation to funding for children with disabilities.
Time, as always, is the enemy and therefore I must close. But in doing so I again thank the noble Baroness, Lady Uddin, for initiating this debate. I also fervently hope that the efforts of Ivan and Charika, and all those who support the autism campaign, are rewarded by practical and positive progress. So much, we all know, can be achieved for and by children and adults with autistic spectrum disorders. I hope that whatever the Minister has to say this evening will make a real practical difference to the parents and children who are special and who deserve to have their needs met as of right.
§ 11.31 p.m.
§ Lord Addington
My Lords, I congratulate the noble Baroness, Lady Uddin, on bringing this subject forward. As she spoke it reminded me of an incident 140 just over 15 years ago when I had to make my maiden speech on dyslexia, though in my case it was a personal experience not one related to a near relative.
Also, the longer I look at this subject, the more and more similar it seems to the process through which dyslexia had to travel—the process of asking, "What is this word? What does it mean? Oh, they are all geniuses or loonies". Different tiers; different levels of interaction; different levels of ignorance; different assumptions that it has been dealt with; a lack of comprehension of the ongoing problem outside certain spheres—it is all there. We repeat ourselves.
The noble Lord, Lord Hunt, is one of around four Ministers who could be responding to this debate. Education has already been dealt with. Works and pensions certainly have a part to play in this topic. We can even go on to the civil rights issues involved. I have a degree of sympathy for the noble Lord and suggest that he merely carries my comments to the appropriate ear at the end of the debate.
The noble Baroness, Lady Blatch, quite rightly spoke of the problems within the education system and the fact that every time we think we have it right in education, we seem to have to continue looking for more solutions and correcting what goes on. I felt that eventually we would be able to remove the disability portfolio. But people keep running back to the professionals. They keep saying, "We know what we are dealing with", or, "We will assign it to something else". That is why we hear platitudes like, "His speech will get better" or, "He is just a bit slow". That leads to late intervention, help and support which leads to problems later on.
It is often said, "He will get by somehow". Well, to be perfectly honest, people do. The argument about statistics is ongoing. I will bet any amount of money on the fact that we have no idea of the true numbers involved, because those who are on the edges are not discovered. Those who are reasonably intelligent, hard working and lucky, or any combination of those, will "get by" in the system; they will not encounter major problems and will get through.
When it comes to autism—I do not claim any great expertise in this subject—and the difficulties of communication and relating to one's fellow man, we find that most of the jobs and niches in which people could previously hide are disappearing in our society. Greater inter-personal relationships are required in our adult life. That means that the problem is a growing one and one we will start to encounter in the adult sector.
There is always a danger, when we concentrate on what appears to be a child-based problem, of forgetting that children grow up. This is an issue that runs through the argument once again. We forget that an adult will eventually be out there, and unless he has received the appropriate training, he will be difficult to employ and will lack flexibility in employment. His social skills will be low.
My research for the debate highlighted the number of times that doctors and psychiatrists find that problem. They often find themselves treating 141 symptoms of depression because they have not spotted that someone has Asperger syndrome. It is not surprising that someone who finds it difficult to relate to the world is depressed, but he often does not know why he finds it so difficult. Lack of recognition leads to knock-on costs in human and financial terms for as long as the person lives.
The Government must ensure that the medical profession is involved. They should be the first port of call—not teachers. Parents, too, need to be more genned up to catch the child. It is an acknowledged fact throughout the world that deals with disabilities that disabled people should choose their parents well. Generally speaking, a couple of lawyers are the best bet.
The noble Baroness, Lady Blatch, provided the tribunal for special educational needs with a very hefty stick. We may need something equally heavy with which to thump the doctors. Both professions are under considerable pressure with regard to recruitment and retention of staff and it is probably not fair to throw this at them. But this is a case of survival tactics. We should do more to back up the professions here.
The auxiliary services needed to provide the necessary skills for those with autistic spectrum disorder to survive in the outside world cannot be over-emphasised. They need training to relate at the highest level and it must start early. That is why we need to ensure that doctors are better informed about what is going on so that they do not resort to a series of hackneyed expressions. It is often because they simply do not know about certain disabilities. The Government must take on the lead role of ensuring that they do. The diagnosis must be recognised so that those with the disability can be properly trained.
The autism spectrum is incredibly wide. There are no pat answers which means that this process is increasingly difficult, but we must provide a way of ensuring that doctors and those involved in teaching are properly supported. They should at least know enough when a parent comes along with concerns. A busy professional who is hit by something from left field about which they are not aware will not respond correctly. It is that simple. He may say that the child is awkward, thick, difficult or whatever. It is human nature and is almost guaranteed if no support is offered.
Despite the fact that the idea of Autism Awareness Year is good and we need it, it is also an indictment of the fact that we do not move fast enough. We need to he kicked into doing things; we need to he pushed; we need to be dragged. People do not like making changes. If we can get the subject ingrained into people's psyche, even to the extent that dyslexia is, we will still have a long way to go. We will still have to ensure that all factions of the government machine know what they are talking about and can give advice to other people. It is about trying to get knowledge into the system and recognising that it is necessary to take time in trying to understand it. Until we achieve that high degree of awareness, admitting that we do not 142 know the answers but that someone else does—a difficult thing for a professional to admit to—we shall carry on having debates such as this. While we do that, the number of adults who have autistic spectrum disorders who find it incredibly difficult to function in society will grow. The children may catch the headlines but the real problems are with those after the age of 16/18. We should bear that in mind. That is where the real problem is and where the ongoing costs to society will be paid.
§ 11.40 p.m.
§ Baroness Pitkeathley
My Lords, I too would like to thank my noble friend for giving us the opportunity to focus on this important issue tonight and for her moving exposition of the problems faced by families with an autistic member. I fully support her call for more support and attention for the problems of autism since I welcome anything which enables society to be more understanding about the problems of those who care for anyone with a disability of any kind.
I want to take this opportunity to look more generally at the problems faced by parents of all children with special needs. I ask the Minister for his response to a particular need which in my experience many of those parents have.
The Government are to be congratulated—and we should acknowledge the progress that has been made—on ensuring that the needs of disabled children and their families are moving up the agenda. New government initiatives such as the Quality Protects initiative have given social services departments a specific three-year allocation to develop services for children. The Special Education Needs and Disability Act, which comes into force from September of this year, should further increase the numbers of disabled children educated within mainstream schools And give protection against disability discrimination in the educational system, which we have heard so much about so far this evening.
The Carers and Disabled Children Act, which I had the honour of taking through your Lordships' House, is already making a difference to families' lives. The provision for vouchers for respite care, due to come in later this year, will further increase parental choice.
The Children's National Service Framework has a separate expert working group on disabled children. The Minister for social care has appointed the chief executive of Contact a Family, the leading charity campaigning for the families of disabled children, to chair that organisation. So progress has certainly been made.
However, disabled children and their families are still excluded in many ways. I remind noble Lords of some of the numbers. There are more than 300,000 children with disabilities under the age of 16 in the United Kingdom. That is 3 per cent of the child population. Of these, more than 100,000 are severely disabled. Around 17,000 families have more than one disabled child, so they have double the caring responsibilities. Each day in the United Kingdom more than 75 children are born or diagnosed with a 143 serious disability. The Birth Defects Foundation research released last week estimates that the number of babies born with birth defects of some kind has increased by some 50 per cent in five years.
Although communication is better than it was, anyone who has had anything to do with parent carers will have horror stories to tell about how diagnostic information is given to parents at this very difficult time. We should here commend the work of organisations such as Contact a Family and the many disease-specific organisations, such as the National Autistic Society, for their work at these very difficult times in giving out information, giving the parents comfort and putting them in touch with other parents with the same kind of experience, and so on.
There are interesting statistics about specific impairments. The Royal National Institute for the Blind, for example, estimates that there are 24,000 plus children with significantly impaired vision under the age of 16. The Royal National Institute for the Deaf estimates that there are about 25,000 deaf or hard of hearing children under 15 who are deaf or hard of hearing; there are 50,000 children with epilepsy; 1,000 babies are born every year with Down's Syndrome; and so on.
For families of children with disabilities, as my noble friend has reminded us, finances are almost always a problem. There have been significant improvements in benefits in relation to disabled children. For example, there is the introduction of the enhanced disability premium on income support. giving an extra £11 odd a week for severely disabled children. The above inflation rise in the disabled child premium is also most welcome. The plans to extend the invalid care allowance for eight weeks after the death of' the disabled person—long fought for by the carers' movement—will help bereaved parents. We should never forget the role that grandparents can play in looking after children with disabilities. They may benefit from the extension of the invalid care allowance to the over 65s.
However, half of households with disabled children lack some of life's basic necessities because they simply cannot afford them. Three-quarters of families with a disabled child live in a home which is unsuitable for the needs of that disabled child. Parents of a disabled child often say that they spend twice as much on comparable items as those whose children are not disabled.
In the limited time available I would like to bring to the Minister's attention one specific problem which I believe cuts across the whole spectrum of disability; that is, children in hospital and the parents' ability to visit. Contact a Family is campaigning to persuade the Government to offer financial assistance with the costs of visiting a sick child in hospital. As more and more children are being treated at specialist centres which are many miles from their home, families are often unable to avoid the travelling costs of visiting them.
In his report on the Bristol Royal Infirmary, Professor Kennedy recommended that families are assisted to meet the costs arising from travelling and 144 being away from home so that they may be with their sick child in a tertiary care centre. Unfortunately, the Government did not accept that part of his recommendation.
The difficulty is that help with the costs of travelling to hospital for treatment are met through a statutory scheme for low income families but the costs of travelling to hospital for visiting are not included within that scheme. The only way of having such costs met is through the discretionary Social Fund, which is cash limited, as noble Lords will know, and restricted to families on income support. Low income families who are working or on benefits other than income support can receive no help at all.
There is a statutory scheme to help people visit family members in prison. It does seem perhaps unfair that this is a very different situation to that of a sick child in hospital whose parents may receive no assistance at all with the costs of visiting their child.
There has been clear recognition by the Government over a number of years that children need to have their parents with them when in hospital, and that includes staying overnight. The Department of Health's own guidance paper the Welfare of Children and Young People in Hospital is very explicit on this point, stating that family support is essential and not a luxury.
I hope that the Government might wish to introduce statutory help for low income families to cover the cost of hospital visiting, which would target help on those on the lowest incomes and those parents whose children are receiving care in a tertiary centre some way away from their homes so that they can receive help towards visiting costs regardless of their means.
In conclusion, I wish to leave noble Lords with a very important statistic that we should never forget. Nine out of 10 children with severe disabilities, physical, mental and emotional, are cared for at home by their families. They do this willingly and they do it with love. Much progress has been made in helping them, but there is still some way to go.
§ 11.48 p.m.
§ Lord Clement-Jones
My Lords. I begin by congratulating the noble Baroness, Lady Uddin, on initiating this debate and for her very moving introduction to it. However, I regret that the debate is taking place at a time of night when it is rather more difficult than usual to fire on all cylinders. I shall keep my remarks fairly short as a result.
I declare an interest as the chairman of trustees of Treehouse, which is a school for profoundly autistic children. Certainly, that has coloured my own experience and given me a much greater insight than I would have had otherwise into some of the issues raised this evening.
I also pay tribute, as other noble Lords have done, to Ivan and Charika Corea, who have been the inspiration behind Autism Awareness Year. It was very interesting to see how the germ of an idea suddenly blossomed over last year and the very persuasive way in which they summoned people to their cause in creating what I believe is a very 145 important year. It allies with the 40th anniversary of the National Autistic Society. That of itself has very effectively begun to raise awareness of autism.
One important matter has already become apparent in this debate. It is the experience of parents and children with autism and of carers. That is absolutely vital. It is difficult for those of us who do not have direct personal experience of autism in their families to understand some of the barriers to getting assessment, a statement, proper education—whether inclusive or specialist—or other forms of support. A common strand runs through the experience of carers and parents of which we must take note.
The success of this year will be measured by further increases in public awareness and in ministerial success in securing more resources and action for the young people, adults and their carers who are affected. Already, awareness among parliamentarians is increasing. Two years ago, the all-party autism group was set up under the chairmanship of Dr Stephen Ladyman. Although I am a relative newcomer, I had the good fortune to become vice-chairman of the group. It has effectively considered and discussed a whole range of issues affecting people with autistic spectrum disorder and Asberger's, and has engaged in dialogue with Ministers.
Ministers have attended its meetings and some important announcements have been made. One that springs to mind is that of the noble Baroness, Lady Ashton of Uphol land, who made an important announcement about including autistic spectrum disorder in the school census when children join school. Many of us have been pressing for some years for a proper baseline when children enter school of their disabilities and special educational needs. Although to some extent one relies on assessment and statementing, that will never be as fine a tool as a proper census, as exists in Scotland. Scotland has certainly proven that a proper census on joining school demonstrates the growth in autistic spectrum disorder at a young age.
The costs of autism to society are immense. The Mental Health Foundation calculated two years ago that it cost £1 billion a year and carried an individual lifetime cost of almost £3 million per child. On recent figures, the total figure could be as high as £5 billion. That includes such costs as health costs, education costs, social security costs, social services costs, the loss of the earnings of parents acting as carers and the loss of taxation on earnings.
To date, there has been no official monitoring of autism, despite a 1997 recommendation of the Health Select Committee to that effect. Nor does monitoring take place at local level in England and Wales, although, as I mentioned, the Scots school census has demonstrated dramatic increases, even since 1998. In fact, the National Autistic Society estimates that one in 110 children now suffers from autistic spectrum disorder, which is four times greater than even the highest incidence reported in the previous 30 years. A 1983 study showed an incidence of one in 625.
146 It is not clear why there has been an increase. The Medical Research Council review of autism, which reported at the end of last year, admitted that autism incidence is 10 times higher than 10 years ago. It acknowledges that the current state of knowledge of the causes and effects of autism is inadequate and that further research is needed.
I do not want to go into great detail about the causes, but, as the MRC said, a great deal more research is needed. I hope that the Minister can assure us that that research will take place. I find it difficult to believe that the huge identified increase both here and in the United States is due purely to better diagnosis, clearer definition and increased awareness. I believe that other environmental factors are involved.
There are major issues about assessment and the availability of proper education for children with autistic spectrum disorder. One could start with the whole process of assessment. It should take place at the earliest possible age, but in practice it does not. As other noble Lords have said, the earlier the intervention, the better the chance of a child being able to overcome the problems posed by ASD. Last year, in its report The Rising Challenge, the all-party group found that assessment in schools was far from adequate or uniform. It demonstrated that 75 per cent of those who had ASD were not statemented. Yet over 10 per cent of children with special educational needs have autistic spectrum disorder. One of the most depressing aspects of that report was the lack of data from local education authorities.
All children should be assessed at the earliest practical age to discover whether they have autistic tendencies. As soon as such tendencies are picked up, resources must be put in to help. It is also vital that assessment procedures are consistent. The all-party group has recently heard from Professor Ann le Couteur and Dr Gillian Baird about an important national initiative. It is a joint initiative by the Royal College of Paediatrics and Child Health and the Royal College of Psychiatrists, which has produced draft guidelines designed to identify pre-school children with autism and makes recommendations on multi-agency assessment. I could—but will not—go into greater detail about the nature of that multi-agency assessment, which is of enormous importance. It is even more important that the work of NIASA should be able to continue. It needs further resources, and, as Professor le Couteur said to the all-party group, those resources are by no means guaranteed. The Minister should give us an assurance about that.
There is also a dearth of specialist education and support for children. LEAs are only beginning to wake up to the scale of the need to support children with ASD or make specialist provision. A recent PACE survey demonstrates the problems that parents have experienced in obtaining funding for their children. We have heard about that from other noble Lords today. There are also problems associated with going to the tribunals.
147 Respite is another aspect. The strain and financial consequences of providing care for autistic children can be significant. Support for the families of autistic children is vital, particularly respite care, but few local authorities provide it. As has been demonstrated, there are some extremely good value schemes using networks of volunteers. For instance, £17,000 can support up to 12 families. That is very good value for that kind of support.
Noble Lords mentioned the issue of adults and employment. One of the key areas that we must highlight is the situation of autistic adults in this country, as my noble friend Lord Addington said. Sixty per cent of autistic adults did not find out that they were autistic until they were 16. They find it difficult to find jobs, even those with Asperger syndrome, who sometimes have higher education qualifications. There is an important scheme called Prospects employment service, which gives people with autism support in applying for jobs. It trains employers and provides on-the-job training. Currently, it is based only in London and Glasgow and has some outreach in Sheffield. I hope that the Department of Health and other departments will look favourably on that scheme. It is important that the scheme spreads.
Transition to adulthood is one of the key problems in education. One of the great fears that parents have is about how their children will cope in the outside world. I am lucky to be involved in discussions about how a school that currently only has children under the age of 11 will cope with the kind of education that the children will need when they reach secondary level.
There is a huge amount to be done. If the debate were taking place at any other time, we would have a much larger attendance. It can truly be said of autistic children that an investment now in early assessment, support in education and social services for them and their carers and in employment will pay huge dividends.
I welcome many of the things that Ministers are doing at national level. The agreement that autism will be used as an exemplar, for instance, in the national service framework; the decision to include autism in the school census of SEN conditions for new arrivals at school. But this needs to be translated in a great many ways into local action.
The next step from awareness, as many noble Lords have pointed out, is action and that is what we expect from now on.
§ Lord Astor of Hever
My Lords, I also thank the noble Baroness, Lady Uddin, for introducing this debate. It is a tragedy that this important subject is being considered at such a late hour.
Like the noble Baroness, I declare an interest as the parent of a child with autism. This debate has seen some very well-informed speeches that reflect a clear commitment to people with autism. The noble Baroness, Lady Uddin, focused on the gaps in 148 professional awareness. I can personally relate to much of what she said. My noble friend Lady Blatch spoke with great authority on the problems autistic children and their families experience with education provision. I would like to pay tribute to her for the energy with which she debated the SEN changes last year.
The noble Lord, Lord Addington, pointed out the different areas of government that need to be made aware of the wide spectrum of autism. The noble Baroness, Lady Pitkeathley, pointed out the problems faced by families, including grandparents, of children with special needs and how excluded they are. The noble Lord, Lord Clement-Jones, mentioned the Treehouse Trust. I compliment him on the wonderful work he does as chairman and also on the hard work he puts into the All-Party Group on Autism, and I declare an interest as secretary of the group.
The group has successfully united all parties to improve awareness and services for people with autism and their families. The group now has 150 parliamentary members and, I agree with the noble Lord, Lord Clement-Jones, has increased awareness of autism and Asperger syndrome within government.
The group's success has been made possible by generous funding from the Shirley Foundation, founded by Dame Stephanie Shirley, who has a dynamic vision of making autism resources in the UK the best in the world.
There are dramatic increases in the number of children with ASD coming through the education system, but this has not been mirrored with an increase in resources or training. Current education services are inadequate and in many cases absent. The Government's emphasis on inclusion relies on schools being equipped to accommodate the needs of children with ASD. This is rarely the case in practice and their needs go unaddressed. This is not good enough.
Schools need to be supported by proper planning and backed up with funds. If the Government want these children in mainstream, they must be given an education to which they are entitled. Mainstream failed my daughter miserably.
All the research points to the need for more training in autism, but that is not happening. In the mainstream, 70 per cent of teachers had worked with children with ASD but only 5 per cent had specific training in their basic teacher training and only a further 5 per cent had been on subsequent training days. Many learning assistants have no training and merely act as babysitters in the classroom. There is a national shortage of speech and language therapists and occupational therapists.
Most mainstream schools have what I call "the Rainman syndrome". They have no real idea what autism is about, accept a child without any proper preparation and get a terrible shock. By half-term the school is unable to cope and the placement is failing. This could be very simply remedied by a proper transition plan before the term starts. For instance, a behaviour management policy could be set in place.
149 The child could be supplied with a workstation to reduce distraction and could be issued with a visual timetable.
How strange that in this era of league tables, of performance indicators and nationally imposed standards in mainstream education LEAs are unable to record data about who is and is not trained, who needs to be and what kind of training is necessary. They are unable to identify what is being spent on autism training or to come up with ways to promote the sharing of knowledge between specialist and mainstream schools and between the maintained and non-maintained sectors.
In the absence of other appropriate education provision, many parents turn in desperation to funding home education programmes themselves. Sometimes they have to sell their homes to pay for them. Surely it is time for the Government to respond to these calls for action and launch a national autism training initiative, backed up with the funds to make it meaningful. They would thereby make a crucial difference to the lifelong prospects of these desperately vulnerable young people.
As my noble friend Lady Blatch pointed out, there is great concern with regard to the recently published SEN Toolkit, in particular Section 7. I should like to ask the Minister what plans the Government have to review the SEN Toolkit.
The identification of autism is vital. Diagnosis is a skilled and complex process requiring multidisciplinary assessment. Many families struggle to leap over the first hurdle of getting a diagnosis for their child. There is no simple blood test or brain scan that can detect autism. Frontline professionals such as GPs often do not recognise autism, and parents are frequently told that they are worrying unnecessarily or not disciplining their child properly. Some doctors rigidly follow the rules set out by the International Classification of Diseases, which does not allow for the breadth and diversity of the spectrum of autism. Diagnosis can be made only through careful clinical observation and the taking of a full developmental history.
Having struggled to convince a GP that there is a problem, families often find that they are passed along through a succession of different professionals to secure a diagnosis. There is a very positive model of one-stop diagnosis in the NAS Centre for Social and Communication Disorders. It assembles a multidisciplinary team on a single clay and conducts full-day diagnosis sessions for each individual, thus avoiding a drawn-out process. This was pioneered by Lorna Wing and Judy Gould, who have done more for the early diagnosis of autistic children than almost anyone else in the world.
The National Initiative for Autism, Screening and Assessment is devising clear, recommended time-scales for the diagnostic process, which should be widely adopted. There is a second need for awareness: recognition of the importance of early intervention after diagnosis, whether someone is diagnosed as a child or an adult.
150 Early intervention can prevent the development and exacerbation of "anti-social" behaviour, such as children withdrawing into themselves and self-injury. Without intervention, the child's difficulties ire more likely to become more entrenched. In Ealing, a multidisciplinary health team has formed a rapid response team to go into nurseries where children are having difficulties. It diagnoses and gives advice to the nursery and, if appropriate, finds funding for a key worker for the child. Since the scheme began, there have been no more exclusions from nurseries in that area.
Autism is a lifelong condition. Although there is a wide variety of abilities within the spectrum, the majority of people with autism will continue to need support throughout their adult lives.
Future provision needs planning. Fifty-nine per cent of adults at the so-called higher functioning end of the spectrum are still living at home with their parents and only 12 per cent are in full-time employment. These people will need support when their parents become elderly and can no longer fulfil the role of carer. What plans do the Government have for the older carers who may not be able to care for their adult child for much longer and who, in turn, cannot rely on their child for assistance when they come to need support?
The Autism Research Centre in Cambridge believes that there is an urgent need for expanding diagnostic services for adults who may have Asperger syndrome or high-functioning autism. People born before 1980 would not have received a diagnosis in childhood as it only entered the diagnostic manuals in the 1990s. These classification systems are rigidly interpreted by many professionals, which means that some people are not diagnosed and others are mistakenly diagnosed with a psychiatric illness. Most are left without support and understanding of their needs.
Mental health services say that the person does not have a mental health problem and that it is not their concern. Learning disability services say that as a person has an IQ over 70 it is not their concern. So these poor people fall into a dark hole. Even from a hard-headed economic point of view there is a clear argument for early intervention compared with the high cost of a bed in an acute mental health ward.
§ 12.12 a.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Lord Hunt of Kings Heath)
My Lords, I thank my noble friend Lady Uddin for her Unstarred Question and for her remarkable speech. I also thank other noble Lords for their contributions to a stimulating debate. The hour is late and there are very few noble Lords in the House, but that does not matter because the importance of the subject is very clear. I can assure the House that the Government will consider very carefully the points that have been made today.
It is not in doubt that autism is a complex and distressing condition for those directly affected by it and for their families. People with autism often lead isolated lives and their social and communication 151 difficulties often place great stress on their families. I wish to begin by acknowledging the tremendous efforts of families and carers.
I was very moved by the contributions made to the debate by noble Lords. My noble friend Lady Uddin spoke of some of the struggles that she had had to get through the system and to be taken seriously. The noble Baroness, Lady Blatch, spoke about her hopes for the legislation that she piloted in the early 1990s. The noble Lord, Lord Addington, spoke about parallels with dyslexia and of the need to focus on adults as much as on children. My noble friend Lady Pitkeathley spoke of the need to ensure support for carers. The noble Lord, Lord Clement-Jones, spoke of the barriers which exist to parents and carers in trying to find a way through the system and of the importance—with which I agree—of a statistical baseline by which to measure both the need and necessary improvements in the services being offered. The noble Lord, Lord Astor of Hever, spoke of his personal experience in the educational issues that he raised. He, too, raised the issue of the support required for adults, particularly when their parents die or are too old to care for people who suffer from autism. I very much agree with that point.
It is clearly very important to ensure that services are responsive to people's needs. I fully accept that raising awareness is a very important part of that. I acknowledge the roles of the British Institute for Brain Injured Children and the Disabilities Trust in spearheading Autism Awareness Year, as well as the impressive number of other organisations who have lent it their support. I also acknowledge the personal commitment of Ivan and Charika Corea, without whom this would not have happened. The Government warmly welcome initiatives that aim to improve our knowledge and understanding of autism. The initiative was welcomed also by my right honourable friend the Prime Minister, who expressed his support for Autism Awareness Year.
Autism is commanding an increasing amount of public attention as we, as a society, become ever more aware of it. I congratulate the National Autistic Society and wish it well with its 40th anniversary campaign to change attitudes and raise funds for a new 10-year programme. We should also acknowledge the contribution of many concerned Members of both Houses of Parliament, especially of those who have joined the All Party Parliamentary Group—as my noble friend Lady Uddin suggested. The Government are clearly exercised of the importance of ensuring a cohesive response.
There is a great deal going on. Two reports commissioned by the Department of Health are now available. Dr Tony Holland's report on Asperger's Syndrome and the report by the Medical Research Council on the epidemiology and causes of autism. Then, there is the development of good practice guidance by the Department for Education and Skills, which will be published later in the year. There is also the report of the All Party Parliamentary Group, The Rising Challenge—a survey of local education 152 authorities on educational provision for pupils with autistic spectrum disorders, which was formally launched on 13th December.
For Autism Awareness Week in May 2001, the NAS published its report, Ignored or Ineligible?, which focuses on services for adults. There is, therefore, a wealth of material available from both government and other sources to inform the activities of Autism Awareness Year. I shall refer to some of the reports in more detail later. I suggest that the cumulative impact of all this work is that we have a good platform on which to build. But, of course, there are many challenges ahead.
As we know, autism is a lifelong developmental disability which affects the way in which a person communicates and relates to other people. Those affected have a triad of impairments: in social interaction; in social communication; and in imagination. For those with autism, a first important step is correct diagnosis. I very much share the views of noble Lords who have spoken on this matter.
We are taking a very close interest in the independent initiative on autism being chaired by Professor Ann Le Couteur. This is a very important piece of work. Representatives of both my department and the DfES are acting as observers on the working group. We look forward to seeing the conclusions, in particular on screening, diagnosis and early intervention. My understanding is that the report will be published in the summer. I can assure noble Lords that we shall want to take its recommendations very seriously.
Because of our concern about diagnostic assessment and treatment of children and adults with Asperger's Syndrome, the department commissioned a report from Dr Tony Holland of the University of Cambridge. His recommendations relate to a wide range of issues, such as professional groups developing their awareness of Asperger's Syndrome, which again picks up a number of the points made by noble Lords; secondly, the need for health, social and other services to work together; and, thirdly, the need for population based studies to establish its prevalence. The last point was taken further with the work that we commissioned in March last year from the Medical Research Council. That work asked the MRC to undertake a detailed review of the current state of knowledge of autism and to suggest possible areas for further research.
As the noble Lord, Lord Clement-Jones, mentioned, in December, the MRC published the report of its review. This provides a clear, authoritative picture of what scientific research has revealed about the epidemiology and causes of autism. It notes that the apparent increase in prevalence of autism is likely to have resulted from better diagnosis and clearer definition as well as increased awareness. It also indicates that many factors may play a part in causing autism.
153 The strongest evidence to date is for a major genetic component. It is thought that several genes may operate together to create susceptibility to autism. It is entirely plausible that autistic behaviours might be derived from a number of different genetic combinations. Several environmental factors were suggested that might interact with genetic susceptibility to cause autism. These include exposure before or after birth to drugs, infections or heavy metals. The report notes that there is currently insufficient evidence on these and says that many of the theories merit more scientifically rigorous examination.
That is an important conclusion. I agree with the noble Lord, Lord Clement-Jones, about the importance of further research. On 14th February, my ministerial colleague Jacqui Smith announced an additional £2.5 million allocation to the MRC to help take forward the recommendations in its report. We are engaged in a dialogue with the MRC about future autism research. I shall be happy to report to your Lordships later in the year when the outcome of those discussions is known.
It is also important that we pick up the MRC's interesting recommendation to find ways of networking the messages not only from the MRC review, but also from some of the other recently completed and ongoing autism-related reviews. Some very important messages are emerging from those reviews, which need to come to the attention of policy makers, practitioners, researchers and lay people. Training for all those people is very important. The noble Lord, Lord Addington, talked particularly about the need for training for doctors. Training needs to be considered in the round, covering a range of professionals.
My colleague Jacqui Smith has asked officials in the Department of Health to consider how we can help to get the messages out, perhaps with conferences or a series of seminars to put across key issues. She has also said that she wants to consider whether it would he appropriate to issue guidance to those in the field; and, if so, what the best format and timing would be. She will want to consider that and take account of the points that have been made tonight.
The noble Baroness, Lady Blatch, and the noble Lord, Lord Clement-Jones, made a particular point of raising issues in relation to the education sector. This is an important year for special educational needs provision. The revised SEN code of practice has been in place since 1st January. It strengthens the guidance on identifying and meeting children's needs and encourages early identification. This year will also see the publication of the Department for Education and Skills autism working group's good practice guide. We have received representations from across government, the NAS, the Parents Autism Campaign for Education, service providers and autism researchers. I listened with great interest to the noble Baroness, Lady Blatch. She spoke about a lack of consistency and of her disappointment at still finding problems of inconsistency a decade on from the 1993 154 Act. I acknowledge her role in the early 1990s and agree that we need to tackle inconsistency with some vigour.
I was also interested in what the noble Baroness said about tribunals and the llth-hour resolution of cases. I have two points to make in relation to that First, it is worth acknowledging that autistic spectrum disorder is a complex condition and there is loom for genuine disagreement between parents and local education authorities. The tribunals are there to provide an even-handed, independent method of deciding on those disagreements. I agree with the noble Baroness that there should not be an abuse of the system.
The Special Educational Needs and Disability Act 2001 obliges LEAs from 1st January to provide partnership services to parents, to provide independent advice to parents of children with SEN and to offer informal dispute resolution arrangements to parents so that disputes can be resolved in a non-adversarial manner. My understanding is also that, as a result of that Act, from 1st January, there will be no presentational advantage to the LEA in withdrawing at the last minute. From that date, certain types of appeal are to be treated as determined in favour of the parent when the LEA has notified the SEN tribunal that it is conceding. Clearly, however, we shall have to keep a careful eye on future practical experience in that sphere.
The noble Lord, Lord Clement-Jones, suggested that only 25 per cent of children who might qualify have a statement based on national prevalence rates. I suspect that the prevalence rates are those used by the NAS, of 91 per 10,000. That is the highest of the suggested prevalence rates that I have seen, and it might well also include many children with fairly mild presenting difficulties whose needs can be met without a statement. It might be that the 25 per cent represents the right level for statementing. However, I accept the noble Lord's substantive point, which is that unless we have consistent data collection across LEAs it is very difficult to draw hard and fast conclusions from that data. The Autism Working Group's forthcoming guidance will highlight the value of data collection for planning purposes. I believe that the revised SEN code of practice will encourage the early identification of children with SEN including those with autistic spectrum disorder. I think that the code gives adequate guidance on arranging intervention to meet children's needs.
Education is crucially important in this sphere, but so too is the support that is available through the personal social service arrangements. The Government have started to improve services through the Quality Protects programme which is designed to improve children's services. From April 2001, over three years, £60 million from the children's grant has been earmarked for spending on services for disabled children and their families. Last year's QP management action plans show that authorities are beginning to improve the services they provide to disabled children. Many are developing proposals in collaboration with partners from other agencies and 155 sectors, such as the NHS and voluntary sector. More family support services are being provided, particularly home-based respite care and sitting services. Every management action plan includes services which increase the range and scale of provision of leisure, cultural and sport activities.
There are some very good examples of how action has been taken to provide specific, focused services for children with autism, including early diagnosis and medical treatment as necessary and pre-school speech and language therapy services. I very much recognise that more needs to be done to ensure that all autistic children and their families receive high-quality support from social services, education and health services wherever they live. We want to build on this, particularly when we publish the national service framework for children. We have already made it clear that the standards and targets which will be set within the NSF will improve services for children, including those with autism. I cannot stress more the importance of national service frameworks within the NHS in setting high standards and ensuring consistency of approach across the patch, across the country.
Very importantly, the NSF will include care pathway exemplar diagrams illustrating optimum approaches to delivering services in a number of different areas. I see that as a very important way forward in the future. We shall of course need to pick up many of the workforce issues that noble Lords have raised. On the issues raised by my noble friend Lady Uddin on therapist numbers, we have an NHS Plan commitment to address those concerns. We have already seen an increase in the number of speech and language therapists, from 4,870 in 1997, to 5,680 in 2001.
I very much pick up the point made by my noble friend Lady Pitkeathley on the cost of supporting families who have an additional burden of visiting 156 children in hospital. I assure her that Ministers will he considering proposals on that matter in the very near future.
The noble Baroness, Lady Uddin, has asked for a task force. The Government will carefully consider all the suggestions made in this helpful debate. I want to make it clear that autism is a subject that the Government take very seriously. We believe that Autism Awareness Year has an important contribution to make. We shall listen carefully to the messages that emerge from the year.
We have in place a series of actions that will help to bring forward a more effective provision of services. In the coming months the DfES practice guidance on autism will be important. I have said that the Department of Health will also consider issuing complimentary guidance to the NHS and to social service authorities. We shall continue to pursue our constructive dialogue with the MRC on autism research. The further £2.5 million that we have allocated will enhance that. I also emphasise the critical importance of the decision that autism will be used as an exemplar in the forthcoming children's National Health Service framework.
We have some good building blocks, but there are considerable challenges ahead. I agree with the noble Lord, Lord Addington that not least of those is ensuring a co-ordinated response and helping children and families to find their way through the many agencies that have responsibility in this area.
In conclusion, the Government are determined that services for everyone with autism shall continue to improve. We shall continue to work on what more we need to do to improve services for people across the autistic spectrum. That will include listening carefully to the messages that emerge from Autism Awareness Year. I conclude by thanking my noble friend Lady Uddin for bringing these issues to our attention.
House adjourned at twenty-eight minutes before one o'clock.