House of Commons - Education and Skills

Select Committee on Education and Skills Minutes of Evidence

Memorandum submitted by the National Autistic Society

EXECUTIVE SUMMARY

The National Autistic Society (NAS) is the leading charity for people with autistic spectrum disorders in the UK. We run a specialist advice and casework service on special educational needs for parents. We also run six autism specific schools.

The NAS prevalence estimate for autistic spectrum disorders (ASD) in the total population is one in 110.[15] As such, all schools should expect to teach children with autism[16], and have the understanding, resources, training and specialist support to meet their needs.

The autistic spectrum includes children with severe learning disabilities with little or no verbal communication, through to those with an average or high IQ, including those with Asperger syndrome. This wide spectrum of needs requires a wide spectrum of educational provision including mainstream schools, special schools, specialist units attached to mainstream schools and residential provision. All NAS recommendations in this document are listed in full in Appendix 1.

CURRENT EDUCATIONAL OUTCOMES FOR CHILDREN WITH AUTISM

"The admission and retention of pupils with social and behavioural difficulties continue to test the inclusion policy"[17] (Ofsted, 2004)

"There have also been significant increases in the number of children identified with autistic spectrum disorders . . . Our provision needs to improve to meet that need. We need a spectrum of provision to meet a spectrum of need."[18] (Lord Adonis, Parliamentary Under-Secretary of State)

THE NATIONAL AUTISTIC SOCIETY

1. The National Autistic Society is the leading charity for people with autistic spectrum disorders in the UK. The NAS has a membership of over 12,000, a network of 60 branches, and works with more than 90 partner organisations in the autism field.

2. The NAS exists to champion the rights and interests of all people with autism, including Asperger syndrome[22], and to ensure that they and their families receive quality services, appropriate to their needs. There are approximately 535,000 people with autistic spectrum disorders in the UK.

3. The NAS Advocacy for Education service provides advice on special educational needs provision and entitlement for parents and carers. Since its launch in 2000 it has provided advice and assistance to over 7,000 families. The service provides advice on entitlements and helps parents to understand the process for obtaining additional support for their child. It also provides casework support for parents appealing to the SEN and Disability Tribunal. Where possible we aim to help parents represent themselves at Tribunal, but where necessary we provide pro bono representation through our alliance with law firms Clifford Chance and Addleshaw Goddard.

4. In addition to this specific advice and advocacy service on special educational needs we also run a UK wide Autism Helpline where 5.5% of the 35,000 calls last year related to problems with education.

5. The NAS also runs six autism-specific schools across the UK for students of all ages. NAS schools cater for widely varying needs, including more able students and those with high support needs arising out of challenging behaviours. All schools aim to be centres of local expertise and support inclusion.

6. The NAS welcomes this opportunity to submit written evidence. The NAS is a member of the Special Educational Consortium (SEC) and we fully support the evidence submitted by the consortium. This paper aims to supplement this, by highlighting the particular experiences of children with autism. As a membership organisation we seek to represent the experiences of over 12,000 members whose lives are touched by autism. As the NAS both provides autism specific education and supports families of children with autism in mainstream schools through advocacy, casework and support services, we are uniquely placed to comment on the experience of children with autistic spectrum disorders in the education system today. The NAS would welcome the opportunity to supplement this written evidence by giving oral evidence to the committee.

AUTISTIC SPECTRUM DISORDER

7. Autistic spectrum disorder is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with an autistic spectrum disorder experience difficulties with social interaction, social communication and imagination—known as the "triad of impairments".[23]

8. The scientific consensus is that autistic spectrum disorders can be identified in one in 166 children under eight years old.[24] The NAS prevalence estimate for autistic spectrum disorders in the total population is one in 11[25] and this is supported by recent research from the Office for National Statistics which indicates 0.9% of children aged five to 16 years have an ASD[26]. As such, all schools should expect to teach children with autism, and have the understanding, resources, training and specialist support to meet their needs. Some children with an ASD will have accompanying learning disabilities, and almost all will have some level of special educational need (97% according to the Office of National Statistics).

9. The only economic analysis of autism in the UK to date highlighted that, from an annual total cost of autism of at least £1 billion, only 7% was spent on education. The authors concluded that "evidence suggests that even moderate increases in educational provision could potentially result in major savings in later living costs."[27]

AUTISM AND INCLUSION

Recommendation: Autism is a spectrum disorder. This wide spectrum of needs requires a wide spectrum of educational provision including mainstream schools, special schools, specialist units attached to mainstream schools and residential provision.

Recommendation: The child's needs should be the starting point for identifying what type of school they should attend and the support they need in that setting.

Recommendation: Whatever the setting, educational provision for children with autism needs to be appropriately resourced and teachers need relevant expertise.

10. Autism is a spectrum disorder. The autistic spectrum includes children with severe learning disabilities with little or no verbal communication, through to those with an average or high IQ, including those with Asperger syndrome[28]. This wide spectrum of needs requires a wide spectrum of educational provision including mainstream schools, special schools, specialist units attached to mainstream schools and residential provision.

11. Inclusion is about the quality of a child's experience; how a child develops his or her skills, participates in the life of the school and learns and plays with children from a range of backgrounds. Many children with autism can be supported to play a full role in mainstream schools, however some children will be able to have a more inclusive experience in a specialist setting.

12. The principle of inclusion should not be confused with the terms "integration" or "mainstreaming" which describe a situation where the child is placed in mainstream education and expected to adapt to the curriculum and classroom environment. For inclusion to take place, educational provision must be adapted according to the pupil's individual needs. The child's needs should be the starting point for identifying what type of school they should attend and the support they need in that setting.

13. Whatever the setting, educational provision for children with autism needs to be appropriately resourced. All mainstream schools should expect to teach children on the autistic spectrum, and have the understanding, resources, training and specialist support to meet their needs. Where training and resource needs are not met, the principle of inclusion is undermined.

SPECIALIST SUPPORT FOR CHILDREN WITH AUTISM

Recommendation: Development of partnership working between mainstream and special schools

Recommendation: Assess and plan to reduce the barriers to partnership working experienced by independent special schools, so that they can share valuable skills and expertise.

Recommendation: School placements should be based on the individual child's strengths and need, and these may change over time. The principle of inclusion should not take precedence over a child's best interests.

Recommendation: The presumption for mainstream should not be used to reduce access to special school placements for younger children which may aid inclusion in the long term.

Recommendation: Funding needs to be retained centrally by LEAs to provide autism specialist support and advisory services to schools.

14. The NAS believes that special schools have an important role to play in an inclusive education system, both educating children with complex needs, and sharing their skills and expertise with mainstream schools. We welcome that the government recognises the valuable role of special schools in its SEN Strategy, Removing barriers to achievement. [29]We also support the government's focus on breaking down the barriers between mainstream and special schools, although partnership working is currently limited. NAS schools are independent schools where all pupil placements are local authority funded. This status creates many barriers to partnership working, for example teachers working in our schools cannot gain qualified teacher status. This inhibits staff movement between our schools and mainstream schools, and opportunities for trainee teachers to gain experience of teaching children with autism are lost.

Good practice example: Specialist provision equipping a young person to return to mainstream education

The NAS Helen Allison School in Kent provides specialist provision for children with autism aged three to 19 years. Edward, a pupil at the school had been excluded from his mainstream school and had not received any education for 18 months before arriving at Helen Allison with very low self esteem. He has now been at the school for two years and is 17 years old.

Edward has been supported by the school to take evening classes in IT at a mainstream college nearby whilst staying on in the school's residential service. This means that Edward still has access to a team of professionals and support staff including a speech and language therapist and psychiatrist. The continuation of holistic support and the opportunity to stay on in a familiar environment meant that Edward was able to manage the stresses and changes to routine involved in starting a new course and he is progressing well. He now hopes to attend a further education college to study IT, returning to the mainstream full time.

15. The principle of inclusion should never be used as a rationale for cutting specialist provision, as long as that provision continues to be necessary for any child with autism. Children should not be placed in special schools as a last resort when mainstream placements fail. Early access to specialist placements or support can facilitate greater inclusion in the long term. NAS schools are experiencing a changing population of pupils, with a higher percentage of older, more able children with very challenging behaviour and mental health problems who have had negative experiences in mainstream schools. In many cases these individuals may well have been able to move from our schools into mainstream, if they had access to specialist support in the first place, rather than as a last resort.

16. There are an estimated 90,000 children with autism in the UK and approximately 7,500 specialist educational placements exist for this population.[30] This indicates an under provision of specialist placements for children with autism. A lack of specialist support is evident across all settings, from early intervention programmes, specialist outreach and advisory services through to autism-specific units in mainstream schools and autism-specific schools.

17. In light of the current deficit in teacher and whole school training in ASD, specialist advisory and support services are an invaluable resource. The Ofsted report Inclusion: the impact of LEA support and outreach services, found that support and outreach services promoted inclusion and improved the life chances of many vulnerable pupils. However, specialist autism support services are limited and patchy across the country, and the NAS is concerned that existing outreach services are currently being eroded as a result of the delegation of SEN funds from LEAs to schools. The Ofsted report found that where funds were redirected to schools they did not necessarily use them to buy back central support services. In some cases this was because schools did not have enough money to buy back the services they needed. In other cases teachers were not aware of the support that could be made available or understand the difference it might make. The report concludes:

PROVISION FOR PUPILS WITH AUTISM IN MAINSTREAM SCHOOLS

Recommendation: As approximately 90% of children are currently educated in mainstream schools it is vital that schools have the necessary resources and expertise to support them.

Recommendation: The NAS is calling for renewed government commitment to delivering its SEN Strategy, Removing barriers to achievement.

Recommendation: DfES to review implementation and promote the use of the Autistic Spectrum Disorders: Good Practice Guidance.[32]

18. In light of the limited number of autism-specific places for children with autistic spectrum disorders, the majority will be educated in mainstream schools with varying levels of support.

19. The NAS recognises the genuine challenges in developing appropriate mainstream provision for children with autism. The NAS has welcomed the significant government commitments to developing the capacity of mainstream schools to provide for pupils with SEN as set out in the ten-year strategy, Removing barriers to achievement. However, progress has been disappointingly slow, and the NAS is calling for renewed government commitment to delivering the strategy.

20. DfES established an autism working group in 2001 which led to the publication of Autistic Spectrum Disorders: Good Practice Guidance. The NAS welcomed this excellent and practical guidance, and feel that it is an under utilised resource. We recommend that the autism working group is re-convened to review progress made since publication, identify priority areas for future work and to promote awareness amongst schools and LEAs.

The following sections identify the key barriers to appropriate education for children with autism. Each section includes NAS recommendations, which are listed in Appendix 1

TRAINING

SENCO: "I don't believe in Asperger syndrome"

(to parent of child diagnosed with Asperger syndrome)

Recommendation: Initial teacher training to include training in autistic spectrum disorders to enable teachers to recognise the alerting signals of a possible developmental disorder, support children with ASD and know when to seek specialist advice.

Recommendation: Continued professional development in autism to enable teachers to address skills gaps and gain develop more specialist skills and knowledge.

Recommendation: DfES to identify core competencies in autism training for all professionals working with children.

Recommendation: Schools to be supported to adopt a school-wide approach to autism awareness training.

21. Schools need training, resources and specialist support to enable them to support pupils with ASD. At present the scale of the need for training cannot be overstated. NAS research indicates that 72% of schools are dissatisfied with the extent of their teachers' training in autism. In schools identified as having pupils with ASD, only 22% of teachers had received any autism training, the majority for between one to four hours.[33]

22. Removing barriers to achievement states that every teacher should expect to teach children with SEN, and must be equipped with the skills to do so. The Strategy proposes a tiered approach to training, where all teachers have core skills, some teachers in all schools have specialist skills and some teachers in some local schools have advanced skills. We feel that this is a sensible approach and necessarily ambitious. The Strategy also outlines well overdue proposals for a strategic emphasis on SEN within initial teacher training and professional development.

23. Whilst the NAS welcomes that fact that the Training and Development Agency for Schools (TDA) has now commissioned the development of a programme to support teacher training on SEN and disability, the delay since the Strategy was launched in February 2004 is unfortunate. The NAS notes that there is still no guarantee that teachers will receive any SEN training in initial teacher training or continued professional development. Furthermore specific autism training is notably absent from the initial programme outline.

24. The National Autism Plan for Children states that all professionals working with children need to be able to recognise the alerting signals of a possible developmental disorder, support children with ASD and know when to seek specialist advice.[34] The NAS believes that it is vital that this principle is applied to teacher training.

25. Without an understanding of autism, teachers are not equipped to adapt their classes and the environment to enable children with autism to access learning. The following good practice examples demonstrate that where there is an understanding of the individual's impairments, making adjustments in order to include children with autism can be both straightforward and effective.

Good practice example: a reasonable adjustment

A five year old boy with ASD would refuse to say his name when the teacher took the class register.

Staff regarded autism as something that led to children not making eye contact, sitting in corners on their own and rocking, whereas he was quite verbal and able. So they simply saw him as being non-compliant and became increasingly frustrated. The school gave the parents the impression that it was their fault and the parent-school relationship deteriorated.

A trainer on an NAS parenting support programme came in to explain that the communication problems were down to the boy's autism. He wasn't answering the register because he didn't understand why he needed to communicate.

The school was receptive and introduced a new way of registration. Each child has a card with their name on it. After calling out their name for the teacher, they drop it into a post-box. Because this was a more physical rule, the boy could make sense of it. Gradually he started to say his name out loud as well, as he was able to make sense of the situation.[35]

Good practice example: a school's response to behavioural difficulties

An eight-year-old boy with ASD in a Staffordshire primary school kept kissing his teacher throughout the day. The social impairments associated with autism manifest differently in each individual. While many people with ASD find physical contact difficult, others are overly friendly and will seek to hug and touch virtual strangers. Teachers who are not aware of the group of children with ASD are prone to view this physicality as a form of sexual harassment. In this case the school identified that the child's behaviour was related to his condition, and provided suitable support. The sign for "no kissing" (words on a card) was used by the teacher at all times apart from at the beginning and end of sessions when she would enthusiastically let him give her a kiss. This card was gradually phased out over time and the kiss replaced by a high five hand clap.[36]

26. In both of the practice examples above, it is evident that if teachers were not equipped with an understanding of autism the situations could have developed very differently and could have resulted in an escalation of behavioural difficulties and possibly to exclusion.

27. All school staff, not just teachers, need training in autistic spectrum disorders. In 2003 the NAS held Inclusion Awards to celebrate good practice. The awards highlighted that all school staff have an important role to play and this demonstrates the need for whole school awareness of autism. For example, pupils with autism find it hard to cope with unstructured time and are also vulnerable to bullying, this means that break times can be particularly difficult:

Lunchtime supervision has been an issue for our son. He has a statement for 25 hours/week, which covers time in class but he is vulnerable at playtime and lunchtime. All midday assistants in school require training and information about each child with an SEN."

RESEARCH

Recommendation: Funding for research into educational and behavioural interventions for children with autism.

Recommendation: Establish networks for the monitoring and distribution of autism research activity, to identify needs for future research and to promote evidence based policy and practice at national, local and school level.

Recommendation: Better dissemination of information and research activity to parents to enable them to make more informed decisions, possibly through the proposed National Early Intervention Centre of Excellence.

28. The evidence base for the relative efficacy of autism-specific interventions is weak. Few intervention methodologies have been subject to rigorous objective assessment against scientifically-credible criteria. This leaves parents vulnerable to "fad" interventions, and creates tensions between parents and LEAs over whether specific interventions should be funded.

29. The NAS has worked with the Institute of Child Health on Mapping autism research: Identifying UK priorities for the future.[37] The report identifies research into interventions as an area of significant weakness in the UK. The proportion of researchers evaluating interventions in the UK was a third of that in the rest of the world. Comparison between autism research in the UK and the USA, found that more research is funded, and that research funding for autism is coordinated across government agencies in the USA. Following the publication of the report, the government has established a cross-departmental committee in order to share information and co-ordinate autism research.

ADMISSIONS

Recommendation: Expanding school control over admissions policy must be supported by a strong monitoring and accountability framework to ensure that children with autism are not disadvantaged.

Recommendation: Forthcoming Education Bill to protect access to appropriate school transport services for children with SEN and/or disabilities.

30. The NAS has been contacted by a small number of parents experiencing difficulties in relation to admissions and exclusions from City Academies. The NAS is monitoring evidence from our helpline as we wish to explore the issue of the provision of conciliation services by DfES to resolve difficulties between Academies and LEAs, in respect of the admission of children with a statement of SEN. There is concern that these children have a lesser right of access than their peers, and that parents are not involved in the admissions process. It is expected that the forthcoming Education Bill will give schools greater control over admissions procedures. In this context, it is vital that school admissions policies are closely monitored to ensure that pupils with autism who may be perceived to be challenging or difficult are not turned away.

31. School transport services can limit access to an appropriate education for children with autism. Many children have to travel long distances to access school which can mean that they are not in a fit state to learn when they arrive. Where LEAs do not provide adequate specialist provision, children with autism may need to access an out of county placement. However, school transport costs can limit access to a school that can meet the child's needs. The case below demonstrates how school transport can be a barrier to a child accessing appropriate educational provision. It is important to note that the dispute below was not a matter of parental preference.

Real life example: School transport and admissions

The parents of a 10-year-old child with autism agree with their LEA that the most appropriate educational provision for their child is a named school that is out of borough. This school is named in the child's statement of SEN, but with the proviso that if the parents are unable to provide transport to the school, the place will not be provided. The parent cannot drive and there are other school age children in the family making it difficult for the parent to take the child to school. The journey (between 30 and 40 miles) would involve trains, buses and walking so it is clearly inappropriate for primary school age child to make the journey on his own.

If the parents were unable to provide transport to the agreed school, a place would be denied, and an alternative place provided at a second school. This school is agreed to be less appropriate and it is also out of borough, but it is more convenient for the LEA to provide transport to it. Unlike the first choice this school only takes pupils until age 11 years so the child would have to change schools again in a year's time (September 2005).

The SEN and Disability Tribunal cannot rule solely on transport cases, as there is no legal basis on which they can make a decision. Therefore the parents need to find an alternative basis, or legal loophole, in order to appeal. The parent's appeal under the Disability Discrimination Act was rejected as although the SEN and Disability Act (2001) covers school trips it does not apply to school transport.

Therefore unless parents in this situation are prepared to undertake the expensive and long-winded route to judicial review, they will have to accept less appropriate provision for their child, although "less favourable treatment" on the basis of disability is illegal under the Disability Discrimination Act.

(Parent advised by the NAS Advocacy for Education Service)

EXCLUSIONS

"My son was permanently excluded from nursery and from two schools by time he was seven years old. He has now been out of school for 15 months."

Recommendation: Promote understanding of Disability Discrimination Act (2005) (1995) to seek to reduce high level of informal exclusions of pupils with autism.

Recommendation: Training in autism and behaviour management for all school staff.

Recommendation: Development of LEA support services and partnership working with autism-specific schools and units, to enable schools to access specialist advice and training in managing challenging behaviour.

Recommendation: Schools should be guided to review child's support needs before taking disciplinary action, and where appropriate initiate statutory assessment.

32. Over a quarter (27%) of children with autism have been excluded form school at some point, and most of these (23%) have been excluded on more than one occasion.[38]

33. An NAS survey found that the most common reason given to parents when their child was excluded was that the school could not cope with the child.[39] This indicates that exclusion is often linked to inadequate support and failure to make reasonable adjustments to enable children with autism to access school life.

34. The mainstream school environment throws up a range of challenges for pupils with autism, including Asperger syndrome, especially at secondary level. Environmental triggers or disruption to routines can lead to high anxiety. In terms of peer relationships, difficulty with social interaction and communication can lead to frustration, bullying and low self-esteem. A classic pattern for children with ASD who exhibit challenging behaviour is that low-level bullying and teasing from other children, or stress built up in the classroom, triggers a sudden and violent response. In other instances, apparent aggression may become the only means of expression for a child frustrated by their impairments.

35. The Code of Practice for Schools on the Disability Discrimination Act (1995) includes the following scenario:

A pupil with autism goes to the front of the dinner queue. A teacher standing nearby tells him not to "barge in". The pupil becomes anxious but does not move. The teacher insists that the pupil must not "jump the queue". The pupil becomes more and more agitated and hits the teacher. The pupil is excluded temporarily from the school.

36. The Code of Practice notes that this child has difficulty in managing social situations as a consequence of his autism. He has difficulty in understanding the purpose of a queue, he has difficulty understanding figurative language such as "jump the queue" and "barge in" and he has difficulty in managing escalating levels of anxiety. In determining whether the exclusion is justified the school should consider if they have taken reasonable steps to prevent the incident happening. These could include:

— Staff training about autism and how the disability manifests itself.

— Staff training on strategies to avoid difficulties, for example, avoiding negative instructions and symbolic language such as "jumping the queue".

— Staff training on strategies to overcome difficulties if they do arise.

— Training for the pupil in coping with social situations, such as queuing.

— The development of strategies for communicating that he is upset or confused.

37. The Code of Practice concludes that if the school could have taken steps of this type, but did not, it may not be possible for them to justify the exclusion. The NAS does not condone violence against teachers. However, this scenario demonstrates that it is inappropriate to take punitive action against a pupil where the appropriate reasonable adjustments, training and support have not been made.

38. Many of the exclusions experienced by children with ASD will be "temporary" or "informal" fixed-term exclusions which are frequently omitted from exclusions data. If most permanent exclusions for children with autism result from a failure to understand and manage their challenging behaviour, these informal exclusions occur when a school simply cannot cope with the child at all. This situation most commonly occurs at lunchtime, when schools do not have the necessary resources to ensure the safety of the child and his or her peers in the playground. Parents might be asked to come into school to look after their children during break times, or they may have to collect them when their child's peers are going on a school trip or preparing for a school play.

39. The large number of these fixed-term exclusions demonstrates the need for whole-school autism awareness training to give all members of staff an understanding of how to cope with children with ASD. Informal exclusion is contrary to the Disability Discrimination Act (1995), and the level of informal exclusions highlights the need for greater awareness of disability discrimination law.

"We were frequently asked to take our son home at lunchtime. When we queried whether the school was saying they could not support our son, they told us that either we continued or Charlie would be actually excluded and it would go on his `record'."

"Jenny was not allowed on school trip even though she wanted to go. The school said they didn't have enough staff to cope with her."

"Can you sign this holiday form for the rest of the term—we're all stressed and cannot cope with him" (School to parent near to Christmas).

40. The level of informal exclusions of pupils with autism, needs to be considered in light of government policy for extended schools and the development of breakfast and after school clubs as part of "wraparound childcare".

"I have two children with ASD. I have asked about inclusion policy/practice about after school clubs and trips away and there has been no policy or thought about including children with additional support needs."

Good practice example: NAS Robert Ogden School, South Yorkshire

30% of pupils at the NAS Robert Ogden School were permanently excluded from both mainstream and special schools before they came to the school.

A proportion of these pupils with challenging behaviours were spending a significant amount of time out of classes because they were inhibiting the learning of other pupils. In order to meet these pupil's needs, the school has established at Key Stages 3 and 4 an "Inclusion Resource". Each pupil is given a personalised "inclusion" timetable which enables them to negotiate their access to learning groups, or particular teachers with whom they feel comfortable. There is not an expectation that these pupils will attend all classes with their peers. Each pupil has an individual inclusion target each week, for example to attend an after school club. Pupils have been able to build up their tolerance of group learning, and have a personalised learning programme and their own space when they choose to use it.

RAISING STANDARDS OF ACHIEVEMENT FOR SEN PUPILS

"I can't imagine anyone anywhere having anything good to say about your son"

(Head teacher to parent of child with autism)

"It doesn't matter if she doesn't do her GCSEs. She can do them later."

(Teacher to parent)

Recommendation: Review and strengthen accountability for children's progress, provision and outcomes, particularly as the school improvement process moves towards the use of school improvement partners.

41. Educational outcomes for children with autism are poor, and only 6% of all people with an ASD proceed to full time paid employment.[40] The Office of National Statistics found that 72% of children with autism are behind in their overall scholastic ability, and that two fifths are more than two years behind.[41] The Ofsted report Towards Inclusive Schools concludes that:

"Expectations of achievement are often neither well enough defined, not pitched high enough. Progress in learning remains slower than it should be for a significant number of pupils."

THE SYSTEM OF STATEMENTS OF NEED FOR SEN PUPILS

Recommendation: Implementation of DfES guidance on the Management of SEN expenditure to be rolled out and monitored.

Recommendation: Avoid using the level of statementing as an indicator of good practice, to ensure LEAs identify reduced statement as an outcome of good practice and parental confidence rather than as an input.

Recommendation: Maintain access to an equitable statutory assessment process, so that children with complex needs can access resources in a delegated system.

Recommendation: Develop clear accountability framework at LEA level, so parents are not passed from school to LEA.

Recommendation: Develop clear accountability framework at school level for provision, progress and outcomes.

Recommendation: Government to review cases where implementation of Tribunal orders exceed statutory timescales and identify patterns of non-implementation; investigate instances of last-minute settlements by LEAs.

Recommendation: The forthcoming Courts and Tribunals Bill needs to address the experiences of parents at the SEN and Disability Tribunal, particularly around non-implementation of Tribunal decisions, and ensure fair and equal access to systems of redress.

42. In our experience parents value the SEN statutory framework and the role of the SEN and Disability Tribunal as they provide a clear baseline of rights and entitlement. However, parents are often frustrated by the complexity of the system and the way in which it is administered locally.

43. The statementing system provides a comprehensive system for identifying a child's needs and the provision needed to meet those needs. It guarantees provision for the child and as such parents highly value it. However, the NAS appreciates that the statementing process is sometimes perceived as bureaucratic, confrontational and complicated by both local education authorities and parents. Too often parents feel that they are in conflict with their LEA, and the process can cost families both financially and in terms of stress. Delay to the support or placement that a young person needs can have significant impact on their educational progress, self esteem and mental health.

44. Parents do not start out wanting a statement for their child, but many find that statutory assessments and statements are necessary to secure the appropriate provision their child needs. As statements provide access to the additional resources there will always be a need to use some form of assessment in order to determine entitlement to those resources.

45. Many parents have to challenge their local education authority's decision at the SEN & Disability Tribunal. One in five cases appearing before Tribunal now concern a child with autism. This figures suggests that there is a problem in agreeing and providing appropriate provision for children with autism.

46. An NAS survey exploring experiences of the SEN and Disability Tribunal highlighted significant parental concerns with Tribunal processes and the outcomes. Key concerns include the emotional and financial cost to parents; the lack of sufficient support and advice for parents; LEA failure to implement Tribunal orders; "eleventh hour" settlements before Tribunal hearings take place and the accessibility and equality of the process. However, overall parents very much valued the role of the SEN and Disability Tribunal as an impartial body resolving disputes between themselves and Local Education Authorities (LEAs).

DELEGATED FUNDING

47. The government has identified the delegation of SEN funding from LEAs to schools as good practice since 2001.[43] By delegating resources for children with statements, it is intended that schools will be able to meet pupil's special educational needs promptly and with greater flexibility. Removing barriers to achievement states that in turn this approach reduces demand for statements as parents become more confident that their child's needs can be met without the need for a statement.[44] The government has produced some clear and welcome guidance on how funding for children with special educational needs should be delegated, entitled Management of SEN expenditure. This guidance should be driven forward and monitored as we are concerned about the way in which this policy has been implemented.

48. The Ofsted report Towards Inclusive Schools highlights a systematic lack of monitoring of progress, provision and outcomes for children with SEN in schools. The report found that few schools evaluate their provision for pupils with SEN systematically so that they can establish how effective the provision is and whether it represents value for money. The availability and use of data on outcomes for pupils with SEN continue to be limited.

49. In this context the NAS is concerned about the monitoring and accountability for SEN resources. We appreciate the need to reduce bureaucracy and paperwork burdens on schools, but where SEN budgets are delegated, schools must be accountable for the funding.

"The LEA pays my school £9,260 per year to provide her with resources to meet her needs. The Governors use the budget to make classes smaller. My LEA have been wonderful and support me but it seems their hands are tied."

"When we suggested to the LEA that they employ a couple of internal auditors to go round, checking on what schools do with their SEN budgets, they look astonished at the very idea. They also say what can they do about even if they find the school is misusing the money—withdraw the school's SEN budget? The SEN children will suffer."

50. Removing barriers to achievement rightly identifies building parental trust and confidence in mainstream provision as a pre requisite for successfully reducing reliance on statements. However, the NAS is concerned that in some areas reducing statements has been perceived to be an explicit strategic aim in itself rather than an outcome of good practice and improved provision.

51. Calls to our Advocacy service indicate that some parents feel that the policy of reducing reliance on statements is leading to reduced access to statements in practice. We are therefore concerned that the delegation of funding is making it more difficult for children with complex need to access support. This is reflected by the fact that more parents of children with autism are appealing against LEA refusal to make a statutory assessment, and the majority of appeals are upheld. The number of appeals on refusal to assess has nearly doubled percentage terms over the 10 years of SENDIST. Refusal to assess is also the type of appeal most likely to be withdrawn or conceded before a hearing, of 320 appeals last year 61% were upheld.[45]

52. The following quotes are all from parents of children with autism who are members of the NAS.

Experience: Access to Early Intervention and Support

"It took five months of battling with the LEA to get them agree to undertake an assessment, by which time we had lodged an appeal with SENDIST and the LEA had been asked to prepare a case statement. I am very concerned about the amount of valuable time Daniel is losing in the early years of his education, which is a critical period. The limited amount of help which the school has been able to provide with delegated funds is not enough."

"The statementing process is necessary in that complex children need a multi-disciplinary assessment to find out the nature and severity of their SEN. Schools do not have the expertise to assess these children."

Experience: Conflict of Interest Between School and LEA

"In my local authority, if a statement is issued, LSA time is funded as follows:

— under 15 hours must be funded by the school;

— 15 to 25 hours, first 15 hours funded by the school, remainder funded by LEA; and

— over 25 hours, fully funded by LEA.

This system clearly creates a conflict of financial interests between the LEA : it is in the school's interest for a child to have more than 25 hours, and in the LEA's for a child to have no more than 15 hours."

Experience: Impact on Relationships Between Parents, Schools and LEAs

"We felt that statementing was the only legal vehicle we as parents had in acquiring help for our child and now even that is being taken away from us. I think the present system of funding is deliberately divisive-setting government against local authorities-local authorities against schools-schools against parents-and parents against each other—as we are all fighting for limited funds."

Experience: Confusion Between Role of LEA and Schools

"All Schools will have the same problem of a cash limited budget as the LEA—it is just pushing the LEAs' problems onto schools."

ACCESS TO SPEECH AND LANGUAGE THERAPY AND OTHER PROFESSIONAL SUPPORT

Recommendation: Government to resource and inspect implementation of the standards on speech and language therapy in the National service framework for children, young people and maternity services standard 8.

Recommendation: Restructuring of the assessment process so that professional reports are independent of local authorities.

53. A shortage of health and education specialists cause delays and limit access to early intervention and support services. Large waiting lists for speech and language therapy mean that opportunities for early intervention are lost and children are at risk of developing behavioural difficulties, deteriorating social relationships, and failure to access the curriculum and their learning potential.

54. Access to speech and language therapy services is very much valued by parents of children with autistic spectrum disorders. A NAS survey asked "If one single change was to be made to teaching and support of your son/daughter to improve their learning or experience what would it be?" Out of all the responses, "more speech therapy" was the third most popular change called for after "more one-to-one support" and "more autism awareness training".[46]

55. A 2003 report by the Welsh Assembly Government found that in some NHS Trusts in Wales, children can wait up to, and sometimes over, 72 weeks for an initial appointment to see a therapist.[47] It is estimated that 40% of the children in need of therapy services in Wales are currently on waiting lists.

56. Workforce and recruitment challenges are illustrated by the fact that 90% of the 2001 graduate cohort from University of Wales Institute Cardiff demonstrated a preference to work with adult patients. The NAS is concerned that the vital zero to four year old age group is not attracting more newly qualified therapists, as it tends to have the largest caseloads.

57. The NAS is aware that many parents pay for independent assessments and reports from educational psychologists and occupational therapist because they want a thorough, quick and impartial assessment of their child's needs. Some parents contacting our advocacy service express concern that professional reports commissioned by their local authority do not provide an accurate description of the child's needs and provision required. This includes reports by educational psychologists, occupational therapists and speech and language therapists. Concerns arise where the professional spends very little time with the child. Parents feel there is a conflict of interest because the independent report is LEA funded and used to determine the level of support the LEA needs to resource for that child.

58. This professional shortage is a key issue across government departments and progress towards meeting the relevant standards in the National service framework for children, young people and maternity services needs to be resourced and monitored.

THE ROLE OF PARENTS IN DECISIONS ABOUT THEIR CHILDREN'S EDUCATION

"When my son was seven years he was diagnosed with ASD. I had to fight the school to get him a statement. At Tribunal it came up that the school had tested him and he had a reading age of four and a half years yet I had never been told. School should have to tell parents about any tests they do."

Recommendation: Improved access to impartial advice and advocacy services, to enable parents to participate in decisions about their children's education.

Recommendation: Re-assess the Education Act 2005 regulations to ensure that information legally required by the SEN and Disability Act 2001 continues to be provided to parents.

59. The Government's drive to increase choice in education is welcome, but parents can only be genuinely involved in decision-making about their children's education as part of a two-way relationship. The school and LEA must keep parents sufficiently informed about their children's progress; and parents must have genuine opportunities to participate in decisions about their children's education.

60. Parents need assistance to be properly enabled to participate in the decision-making process. Yet there is insufficient provision of independent advice and advocacy for parents. The National Autistic Society runs a service for parents of children with autistic spectrum disorders, providing advice on entitlements and helping parents to understand the process for obtaining additional support for their child. We also provides casework support for parents appealing to the SEN and Disability Tribunal. Since its launch in 2000 the NAS Advocacy for education service has provided advice and assistance to over 7,000 families, but we always have a backlog of calls and cannot meet demand.

"I had to fight for every piece of information above from school, LEA and in the end I had to go to independent bodies or charities to receive information. I never did receive school policies; our last resort was taking the school to tribunal for disability discrimination. Our son is at a different school now!"

61. Expected provisions in the forthcoming Education Bill will allow Ofsted and Local Authorities to act upon complaints from parents. In addition, though, it should be remembered that parents' complaints are not always with the school, but often with the Local Authority. The Bill could be extended to allow Ofsted to act upon parents' complaints about Local Authorities.

62. The NAS, both individually and as part of SEC, have expressed concern that the Education Act 2005 removed the duty to produce a Governors' Annual Report (GAR) and hold a parents' meeting as part of the school inspection. The GAR is valued by parents of disabled children as a way of obtaining find vital information about schools, including their SEN policy, a financial summary and arrangements for accessibility and admissions.

63. The Education Act 2005 introduced a school profile to include some of the information that was previously made available in the GAR; information about SEN was to be made available in a school's prospectus. However, parents do not automatically receive a school prospectus—it must be requested—thus placing parents of children with special needs at a disadvantage. The NAS has been dissatisfied with proposals for the school profile which excludes valuable information on SEN.

64. The Education (School Information) (England) (Amendment) Regulations 2005 set out the requirements for the school prospectus, but it does not contain the information required by the SEN and Disability Act 2001. This must be acted upon immediately to ensure that parents are provided with necessary information.

65. In addition, Local Authorities are not fulfilling their legal duties on publishing information about SEN on the internet. A recent survey by the Advisory Centre for Education (ACE) found that two thirds of 12 recently inspected Local Educational Authorities in England, were not publishing on their websites vital information regarding SEN, that they were legally required to publish.[48]

APPENDIX 1

Summary of National Autistic Society recommendations

AUTISM AND INCLUSION

Recommendation: The child's needs should be the starting point for identifying what type of school they should attend and the support they need in that setting.

Recommendation: Whatever the setting, educational provision for children with autism needs to be appropriately resourced and teachers need relevant expertise.

SPECIALIST SUPPORT FOR CHILDREN WITH AUTISM

Recommendation: Development of partnership working between mainstream and special schools.

Recommendation: Assess and plan to reduce the barriers to partnership working experienced by independent special schools, so that they can share valuable skills and expertise.

Recommendation: The presumption for mainstream should not be used to reduce access to special school placements for younger children which may aid inclusion in the long term.

Recommendation: Funding needs to be retained centrally by LEAs to provide autism specialist support and advisory services to schools.

PROVISION FOR PUPILS WITH AUTISM IN MAINSTREAM SCHOOLS

Recommendation: As approximately 90% of children are currently educated in mainstream schools it is vital that schools have the necessary resources and expertise to support them.

Recommendation: The NAS is calling for renewed government commitment to delivering its SEN Strategy, Removing barriers to achievement.

Recommendation: DfES to review implementation and promote the use of the Autistic Spectrum Disorders: Good Practice Guidance (DfES: 2002).

TRAINING

Recommendation: Continued professional development in autism to enable teachers to address skills gaps and gain develop more specialist skills and knowledge.

Recommendation: DfES to identify core competencies in autism training for all professionals working with children.

Recommendation: Schools to be supported to adopt a school-wide approach to autism awareness training.

RESEARCH

Recommendation: Funding for research into educational and behavioural interventions for children with autism.

ADMISSIONS

Recommendation: Forthcoming Education Bill to protect access to appropriate school transport services for children with SEN and/or disabilities.

Recommendation: Expanding school control over admissions policy must be supported by strong monitoring and accountability framework to ensure that children with autism are not disadvantaged.

EXCLUSIONS

Recommendation: Promote understanding of Disability Discrimination Act (2005) (1995) to seek to reduce high level of informal exclusions of pupils with autism.

Recommendation: Training in autism and behaviour management for all school staff.

Recommendation: Schools should be guided to review child's support needs before taking disciplinary action, and where appropriate initiate statutory assessment.

RAISING STANDARDS OF ACHIEVEMENT FOR SEN PUPILS

THE SYSTEM OF STATEMENTS OF NEED FOR SEN PUPILS

Recommendation: Implementation of DfES guidance on the Management of SEN expenditure to be rolled out and monitored.

Recommendation: Maintain access to an equitable statutory assessment process, so that children with complex needs can access resources in a delegated system.

Recommendation: Develop clear accountability framework at LEA level, so parents are not passed from school to LEA.

Recommendation: Develop clear accountability framework at school level for provision, progress and outcomes.

Recommendation: The forthcoming Courts and Tribunals Bill needs to address the experiences of parents at the SEN and Disability Tribunal, particularly around non-implementation of Tribunal decisions.

ACCESS TO SPEECH AND LANGUAGE THERAPY AND OTHER PROFESSIONAL SUPPORT

Recommendation: Restructuring of the assessment process so that professional reports are independent of local authorities.

THE ROLE OF PARENTS IN DECISIONS ABOUT THEIR CHILDREN'S EDUCATION

Recommendation: Improved access to impartial advice and advocacy services, to enable parents to participate in decisions about their children's education.

Recommendation: Re-assess the Education Act 2005 regulations to ensure that information legally required by the SEN and Disability Act 2001 continues to be provided to parents.

October 2005

15 How many people have autism spectrum disorders? (2003) NAS: London. Back

16 Throughout this document the terms "autism" or "ASD" are used to apply to all people with autistic spectrum disorders including those with "high functioning autism" or Asperger syndrome. Back

17 Ofsted (2004) Towards Inclusive Schools, p 5. Back

18 Hansard Offical Report 14 July 2005. Back

19 Office for National Statistics (2005) Mental health of children and young people in Great Britain, 2004. Back

20 Barnard et al (2000) Inclusion and autism: is it working? NAS: London. Back

21 Hughes, Rosemary (2005) The SENDisT-10 years on, Education, Public Law & the Individual, vol 9. Back

22 Asperger syndrome is a form of autism. People with Asperger syndrome have the same traists as those with autism-difficulties in communication, social understanding and social interaction-but will not usually have accompanying learning disabilities. Back

23 Wing, L and Gould, J (1979) Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism and Developmental Disorders, Vol 9(1), pp 11-29. Back

24 Medical Research Council (2001) Review of Autism Research: Causes and Epidemiology. Back

25 How many people have autism spectrum disorders? (2003) NAS: London. Back