§ Motion made, and Question proposed, That this House do now adjourn.—[Joan Ryan.]7.28 pm
§ Mrs. Patsy Calton (Cheadle)
I am grateful for the opportunity to bring this issue to the House so soon after the end of international autism awareness year. Important contributions have been made by speakers in earlier debates, and I have read the remarks of the hon. Members for Buckingham (Mr. Bercow), for Ilford, North (Linda Perham), for Epping Forest (Mrs. Laing) and for South Thanet (Dr. Ladyman), who is chairman of the all-party group. Although I fully recognise the advances made last year, the guidelines on good practice, the good practice in many places and the Government's increased disability funding, there are still families who have extreme difficulty in accessing and obtaining the services that they need.
Autism is more usually referred to these days as ASD—autistic spectrum disorders—and that term covers a number of conditions. People with ASD range from those who may have a learning disability, to those with average or above average intelligence. The condition may be linked to other disabilities and conditions. Despite their wide-ranging differences, everyone with ASD has difficulty with social interaction, social communication and imagination. It is estimated to affect more than 500,000 families in the United Kingdom. One in 86 children are thought to have ASD, but only one in 152 schoolchildren have had a formal diagnosis.
There is little understanding about what causes ASD, but it is likely that genetic predisposition and environmental factors are both involved. No medication can correct the condition, but there is evidence that dietary changes can assist in some cases. It may be that biochemical differences, based on fatty acid metabolism or sulphate levels, provide a partial scientific explanation for differences in membranes and chemical transmitters involved in neural functioning. Interesting articles on the subject may be found in The Nutrition Practitioner, volume 3.3, dated November 2001, and in the You! edition of 25 February 2001.
The National Autistic Society provides services, support and information to its 11,000 members. I am grateful for the briefing that it provided to me, and for the many references to the "ignored or ineligible", which were also kindly sent to me by the all-party group. A common theme mentioned by the NAS and other organisations is that although the conditions are increasingly being diagnosed, the provision of any sort of diagnosis depends on where one lives. Moreover, services after diagnosis are patchy, incomplete or non-existent.
The NAS says:Unfortunately, the likelihood of a child obtaining a diagnosis of autism is very much dependent on where they live…Without an accurate early diagnosis, children with ASD are likely to receive inadequate provision, leaving their special needs unmet. It is vital for families to receive early support from outside as soon as possible. This reduces stress within the family and enables them to understand and support the needs of their child.I would add that that is particularly important in cases where parents themselves may be undiagnosed with ASD. The national initiative for autism screening and 289 assessment—shortened to NIASA—consists of a panel of health and education professionals who aim to address the challenge of screening diagnosis and early intervention for children with autism. The NAS says that it is crucial that the Government fully support NIASA, and that they ensure that it is rolled out to benefit all children with autism, wherever they live.
There are sound economic reasons for the country to take this condition seriously. Health economists have estimated an average lifetime cost to the state of £2.93 million per person with autism. The rising numbers being identified make a compelling financial argument for the provision of services to facilitate employment and independent living for this group.
On Monday of this week, I visited a resource school in my constituency. The head teacher described how a young boy with ASD had had his potential "unlocked" with appropriate teaching. The NAS says that LEAs should plan to train all teachers, assistants and specialist professionals in the awareness and understanding of autism, as part of the accessibility planning duty introduced by the Special Educational Needs and Disability Act 2001. However, teaching with trained teachers and assistants, important as it is, is not enough. Families will often need ongoing health care and social care support, and it is rare to find this offered as a streamlined service. They will need transition planning as their children start school, when they move to secondary school, and as they leave school.
I want to pay tribute to a constituent of mine, Mr. Carroll, who has fought every inch of the way to gain appropriate provision for his seven-year-old son, and support for his family. He is not there yet. I asked for this debate because he brought this condition to my attention, because I know how difficult things are for him and his family, and because I know how difficult things will be for others, some of whom will lack Mr. Carroll's determination.
I want to quote from a letter that I received from Mr. Carroll. I cannot quote all of it, as it runs to four pages, even though it covers only the six months from June last year. Mr. Carroll has written many letters and been in communication with many people, and is simply unable to access the services that his son needs.
The letter begins by referring to letters written in 2002, dated 13 June, 16 October, 6 November, 18 November, 18 December, 19 December, and 23 December. That indicates how much Mr. Carroll and his family are having to do. He talks about the difficulty of obtaining specialist health service appointments, and says that he has not been able to get an appointment since June. He writes:To clarify our situation we would like to, again, list our child's, and our, difficulties.Alexander is the second child of 3"—the family actually has a new baby as well—and suffers from severe autism. The difficulties we have are associated with his autism and health".Those difficulties are:Very poor sleep. Alex disturbs the family sleeping, he is hard work to get to sleep.290 Mr. Carroll goes on to describe a range of typical behaviours associated with severe autism, and a range of other related problems:Alexander needs a very high level of care to keep himself clean…but we his parents need help and advice on how to manage his behaviour, health, sleep patterns etc.We currently get no help with this.Also, although we now have a Social Worker for Alex (after a battle) we and Alex have not yet obtained any services for him ie outreach, referrals, respite, etc.Alexander was described on 12 June 2002 by his consultant as having "severe autism" and "difficulties of poor sleep." Mr. Carroll says:the family are worn out.There then followed difficulties because Alexander was not being properly followed up with a range of medications. The medications do not work but Mr. Carroll has not able to access the people with whom he needs to speak because the medication—Melatonin—can be prescribed only by a consultant. If the consultant cannot be accessed, the medication cannot be changed. The letter contains a page of problems to do with the medication.
Mr. Carroll says that the family by chance heard of sleep clinics through the health centre. This was mentioned to the GP, who said that Alexander had to be referred to a child psychiatrist to access the service. He has not been able to get to a child psychiatrist, so he has not been able to access the service.
Mr. Carroll writes that he needs immediate help from a psychiatrist or psychologistto help us and Alexander to manage his problems and to discuss our difficulties with.Mr. Carroll goes on to say that he has been referred to another hospital in Manchester, but has been told that that hospital cannot treat Alexander because he should be treated by his home hospital. That home hospital then wrote another letter to say that the Manchester hospital might be willing to see Alexander if a referral was made. That shows how the matter is being sent backwards and forwards all the time.
Mr. Carroll says that he has written to ask how he can get in touch with a child psychiatrist as he needshelp and advice and referrals to appropriate clinics/consultants ie sleep clinics, gene specialists, hormone specialists etc. This help is needed now and our son and family should not be denied the services we require!The family has received a leaflet from Alexander's school about the Treehouse centre in Stockport. Their GP made a referral, but the family has heard nothing yet. Mr. Carroll says:We are very disappointed that information on this service has not been volunteered to us…Why hasn't any health professional brought this to our attention?…We are concerned about the medicines being prescribed to Alexander, as nothing seems to work, if anything they seem to have the opposite effect…We are fully aware, (as our MP…is) that there are no specific autism services in Stockport, and haven't been for some time now.He talks about another two letters that he has had to write. He says:On that note, as Alexander already has a diagnosis why…the CAMHS team not been involved, is it because they are not aware of Alex? (he is on the database!)291 The letter is heartbreaking because it shows the sort of difficulties that the family suffer.
§ Mr. David Tredinnick (Bosworth)
The hon. Lady kindly asked me to support her in this debate, and I am happy to do so. I suggested to her and the Minister that there are three key issues here. There must be better coordination among the agencies at county level. Secondly, there needs to be better evaluation of the existing treatments, particularly dietary treatments and assessments of the effects of vitamin C, vitamin B6 and magnesium and some of the specialist treatments. Thirdly, given the hon. Lady's eloquent plea on behalf of her constituent and the work that has been done on both sides of the House, does she agree that the Government should now take a more direct interest in these problems?
§ Mrs. Calton
I am grateful for the hon. Gentleman's intervention. Of course I agree that the situation cannot be allowed to continue, for my constituent or for others.
I have permission to read a letter from the constituent's general practitioner to the chief executive in Stockport. The GP says:I should like to complain in the strongest terms about the apparent lack of help and advice with regard to child and adolescent psychiatry in the Stockport area. I write on behalf of my patient…who is aged 8 and suffers with Autism. (There have been several other cases that would benefit from a referral to the service, however Alex is the most severe and pressing problem.)For the last 3–4 years he has presented his parents with severe problems with regard to sleep disturbance and the parents are getting to the limit of their tolerance. I have referred him twice in the last 12 months to CAMHS and to the Tree House…and according to Father there have been no appointments coming forth.In this situation, the family and primary medical care services need help and assistance from secondary care units and it is completely unacceptable that this service is absent or lacking in the Stockport area.I wrote to the chief executive of the acute trust in November and received a reply just a day or so ago. He acknowledges:Services for children with Autism Spectrum Disorders are probably not comprehensively co-ordinated—they are scattered throughout Health, Education, SS and Voluntary and Independent Sector.He says that a task group has been set up but it is still at the stage of scoping.
Where does this lead us? First, early diagnosis is clearly needed. Secondly, support, like the Early Bird and Help services from the National Autistic Society and Portage, which is available through some local authorities, needs to be there to support and educate parents immediately the diagnosis is made. Parents need the support to help them help themselves.
Thirdly, the family needs a named person to assist them to access the package of services required by the family. Local authorities should establish a clear route for families to access support. Services and support at an early age will increase the person's likelihood of living independently when older and contributing positively to the community.
292 Fourthly, the child needs to be educated in an environment that is autism-aware and responsive to the needs of individual children. There needs to be recognition that those with Asperger's syndrome who are not learning-disabled nevertheless have significant needs.
Fifthly, transition planning should be in place in a timely fashion. All Connexions personal advisers should receive training in autism spectrum disorders. Joint Department for Education and Skills and Department of Health guidance should be issued to social services departments highlighting their responsibility to all young people with ASD during transition.
A great deal is happening in Stockport. Some 146 young people are on the award-winning disability database. It is run by a friend of mine, Elaine Mounter, who received a "Getting the Message Across" award in the House of Lords before Christmas. That work is excellent, but she tells me that families still fear the lack of respite care and the transition to secondary and further education. Too often, they are sent out of area, which costs more and leads to the statutory agencies battling it out over who pays—while the family waits. There is too little supported housing. The voluntary agencies cannot meet all the needs for respite and short-term care. Supported leisure activities or activity-based breaks can prevent the crisis that happens when the family is worn down by the condition of autism.
The National Autistic Society tells us that current services for disabled adults are not designed with autism in mind. People with ASD fall between learning disability and mental health teams. Only 38 per cent, of adults with ASD receive a community care assessment and of those only 45 per cent, receive the services specified as needed. People with Asperger's but without a learning disability are unlikely to receive a service.
The NAS wants the Department of Health to produce statutory guidance on the social care needs of people with autism spectrum disorders. It wants a named senior manager in each local authority to be responsible for the commissioning and delivery of services to that group. Only 10 per cent, of adults with ASD are in paid employment, while 24 per cent, do nothing, or help around the house. The Department for Work and Pensions should provide a national employment support scheme tailored for people with ASD.
The NAS says that there should be explicit recognition that people with ASD are eligible for the whole range of disability benefits and consideration should be given as to how they can be supported into work without risk to their benefits. Forty-nine per cent, of adults with ASD live at home with their parents. They need help with meals, housework, paying bills and personal care. Only 3 per cent, of adults with Asperger's syndrome live fully independently. The NAS wants local agencies to collaborate to provide a range of sheltered housing and supported accommodation in each local area, designed specifically for adults with autism spectrum disorders.
I have used up more than my share of the time for the debate, but I am grateful to the House for listening with such keen attention. I very much hope that the Minister will be able to tell us that something will be done to co-ordinate the services. They are undoubtedly available in bits, but it is impossible for families to access what they need.
§ The Parliamentary Under-Secretary of State for Health (Mr. David Lammy)
I congratulate the hon. Member for Cheadle (Mrs. Calton) on raising such an extremely important issue. The debate comes shortly after a year in which all of us tried to raise awareness of autism in our constituencies. That is an indication of the importance of the issue for carers throughout the country and the hon. Lady spoke eloquently in bringing to the attention of the House the circumstances for the parents of Alexander, her constituent.
It is likely that in the time available I shall be unable to address all the issues raised by the hon. Lady. However, if I do not deal with all her questions, I will write to her to follow them up.
Autism is a complex and distressing condition both for those directly affected by it and for their families and carers. Children and adults with autism often lead very isolated lives. Their social and communication difficulties often put great stress on their families.
I acknowledge the tremendous efforts made by families and carers who support children and relatives with autism. The Government are committed to giving them more support. We accept that in the past there have been frequent delays in the diagnosis and identification of the condition. There has been too little family support and services have been dogged by fragmentation. Like me, Members will know from their constituency casework that carers of autistic children and adults sometimes find themselves in a maze of different assessment processes carried out by different agencies and that they often do not know where to turn for help. The starting point must therefore be to provide services and support in ways that suit children and adults with autism and their families. Adults and children with autism want early diagnosis, intervention and support from agencies, as the hon. Lady suggests: agencies that speak to each other and that make their families' lives easier. They want straightforward, readily available information and access to local community facilities and activities.
The Government are responding to that context and those concerns by ensuring that our policies and programmes reflect those issues. Where needed, the Government have brought in new legislation. The Health Act 1999 introduced a "duty of partnership" making it clear that co-operation between health and social services is no longer an optional extra. The Special Educational Needs and Disability Act 2001 strengthened the support given to parents of children with special educational needs. The Carers and Disabled Children Act 2000 introduced direct payments for carers. The Children (Leaving Care) Act 2000 supports disabled young people leaving the care system. I acknowledge that we started from a poor baseline, and it will take time for those Acts to bed in and to address a patchy picture across the country. More needs to be done within the Department, and I hope that I can address that in moving forward. One of the most important aspects of that is the children's national service framework, which I hope will bring together coherently much of that to which the hon. Lady referred for children with this condition.
294 As the hon. Lady mentioned, one of the key issues for children with autism is to provide early intervention and early support. The evidence is that the earlier support is given, the better the long-term outcome is for the children and their families We are therefore taking a close interest in the work of the national initiative for autism screening and assessment, which she mentioned. We have appointed Dr. Gillian Baird, the secretary of NIASA, as a member of the disabled children's external working group, which is helping us develop the children's national service framework. That will build on the "duty of partnership" in the Health Act 1999 and set national standards for the health service and social services to work in partnership with education and other agencies.
The national service framework will include exemplars setting out how the NSF should be implemented for particular groups of children. It will show how families should receive multi-agency early intervention and support based on their needs. We have already announced that one of those will be on services for children with autism. Dr. Baird is leading on this area of work and is actively involved with the interested voluntary sector groups, such as the National Autistic Society and the Parents Autism Campaign for Education. The NIASA guidance will inform that work. The bottom line is that we hope that the NSF will raise the game in this area for children and families with autism.
The children's NSF will build on the work of the Government's "Quality Protects" programme, which focuses on improving children's social services. Under "Quality Protects", £60 million over three years has been allocated since April 2001. That has been earmarked for spending on services for disabled children and their families, which has provided more family support services, particularly home-based short-term breaks and sitting services. Nearly every single "Quality Protects" management action plan gave details of how local authorities were improving services specifically for children with autism and their families, including providing services such as the Early Bird service and Portage services that the hon. Lady mentioned. For example, Surrey, the Wirral, Reading and Windsor and Maidenhead have all introduced new Early Bird schemes to support children with autism. Sutton, Tameside and Thurrock have introduced new Portage schemes, and Somerset and Southampton are planning and developing new key worker support services.
The "Quality Protects" money will double next year from £15 million to £30 million. However, I recognise that much more needs to be done to ensure that all autistic children and their families receive high-quality support from social services, from education and from the health service wherever they live. That is why, as I said, we will publish the children's national service framework later this year, and I hope that it will drive up standards throughout the country.
I turn now to special educational needs. Children with autism are also benefiting from the improvements and resources that we are promoting to meet special educational needs. The hon. Lady rightly points out that, as a result of the Special Educational Needs and Disability Act 2001, local education authorities and 295 schools must now plan to increase accessibility to school premises and to the curriculum. The revised SEN code of practice also strengthens the guidance on identifying and meeting children's special educational needs.
We are backing our drive to improve provision for those children with significant resources. For example, this year's SEN standards fund is supporting expenditure of £91 million. The hon. Lady mentioned in particular the training of teachers and others in autism awareness. She will be pleased to hear that in-service training is one of the main activities financed by that fund. Guidance from the Department for Education and Skills recommends autism training as an area that LEAs may want to support. We are also making available smaller grants to encourage innovative developments in special educational needs. The SEN training and development fund for 2002–03 aims to 296 increase in-service training and development opportunities offered by higher education institutions for teachers and others, and that includes three projects focusing on autistic spectrum disorders.
Last July, my Department and the DFES published good practice guidance for schools and LEAs on supporting pupils with autism. The guidance is based on the key principles that underpin good provision, including early identification and intervention, family support, and partnership and co-operation with other agencies. The autism working group, which developed the guidance, included not only officials from the Department of Health and the DFES but experts and practitioners in the field, including the—
§ The motion having been made after Seven o 'clock, and the debate having continued for half an hour, Mr. Speaker adjourned the House without Question put, pursuant to the Standing Order.
§ Adjourned at two minutes to Eight o 'clock.