SCN0473
Written evidence from the National Autistic Society
Summary
Introduction
1. Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while there are certain difficulties that everyone on the autism spectrum shares, the condition affects them in different ways. Some autistic people are able to live relatively independent lives, while others will need a lifetime of specialist support. It affects more than one in 100 people in the UK.[3]
2. The National Autistic Society (NAS) is the UK’s leading autism charity. Since we began more than 50 years ago, we have been pioneering new ways to support people and understand autism. We continue to learn every day from the children and adults we support in our schools and care services. Based on our experience, and with support from our members, donors and volunteers, we provide life-changing information and advice to millions of autistic people, their families and friends. We also support professionals, politicians and the public to understand autism better, so that more autistic people of all ages can be understood, supported and appreciated for who they are.
3. The National Autistic Society provides the secretariat to the All Party Parliamentary Group on Autism (APPGA). We supported the APPGA in carrying out an inquiry in 2017 into how well the education system currently works for children and young people on the autism spectrum. The Group’s findings and recommendations are set out in a report entitled ‘Autism and education in England 2017’, which we have submitted to the Committee alongside this submission.
4. We have noted the Committee’s terms of reference, and this submission will focus specifically on assessment and support for children and young people on the autism spectrum, and the transition to the new SEND system. We will also outline how we believe the education system could work better for autistic children and young people. We have also encouraged our charity’s members and supporters to make their own individual submissions to the Committee.
5. The National Autistic Society is happy to provide any further information that the Committee would find useful, or to provide oral evidence if required.
Assessment of needs and provision of support to children on the autism spectrum
Delays in assessing children’s needs
“I hate seeing my child so broken just at the thought of having to go to school.” [Parent]
6. While some children on the autism spectrum have support needs that can be met from schools’ existing resources, many need additional support. 40% of parents who responded to a survey we carried out in 2017 with the All Party Parliamentary Group on Autism told us that their child’s school place does not fully meet their needs, with a similar number saying that they do not believe their child is making good progress with their education.[4]
7. 78% of parents said it has not been easy to get the support their child needs. Too often, children on the autism spectrum have to fail repeatedly before they get a school place that meets their needs. This can be devastating for their school experience and their later lives, as well as being a poor use of local resources. Nearly 70% of children waited more than six months for support, and 50% waited more than a year.
8. The process of getting support begins with a statutory assessment of a child’s needs by their local authority. And the difficulty begins with delays by local authorities in carrying out assessments of children’s needs – or even agreeing that an assessment is required.
Refusals by local authorities to carry out assessments
9. 42% of the parents who responded to our survey said their child was refused an assessment of their special educational needs the first time it was requested. This is similar to the Department for Education’s own figures, which state that there was a 35% increase in the number of requests for education, health and care assessments that were refused by local authorities between 2014/15 and 2015/16.[5]
10. We believe that this situation is unacceptable, and is contrary to the SEND Code of Practice. Once a child has a diagnosis of autism, their local authority should expect to carry out an assessment of their education, health and care needs, if and when this is requested. This is on the basis that a child who is on the autism spectrum ‘may need special educational provision’ – which is the threshold for EHC assessment set out in the SEND Code of Practice.[6]
11. While not every child on the autism spectrum will need special educational provision, there should be a presumption by local authorities that a child with this diagnosis may need an education, health and care needs assessment, and this should be carried out when it is requested.
Lack of specialist input in assessments
“Parents have to fill in the gaps. For parents of children who have severe needs, everything is a struggle – so they may have no time or energy to fight.” [Parent]
12. Children on the autism spectrum often need to be assessed by a number of professionals, including occupational therapists, speech and language therapists and mental health professionals, to build up a full picture of their needs, which may be quite complex. This is in addition to assessment by educational psychologists, who are the linchpin of the education, health and care assessment process.
13. However, we have heard from families and professionals that this specialist input is often not available. This situation is compounded by the diminishing role of local authorities in mainstream schools, and the increasing fragmentation of the school system has had the effect of reducing the availability of specialist autism support teams in some areas.
14. Many parents have told us that, because their local authority did not request assessments by key professionals that would enable their child to access the provision they need, they have paid for their own independent reports. We believe that a child getting the right support should not be dependent on their family having the means to gather the evidence that local authorities should be sourcing.
Transition to new SEND system
“We are stuck in a system that wants the child to fail before help is offered.” [Parent]
15. Along with many other organisations, we welcomed the Children and Families Act 2014 as an opportunity to address many of the problems that had developed in the previous SEN system. We support the principles that underpin both the Act and the SEND Code of Practice – in particular, the importance of involving parents and young people in decision-making, making education, health and social care services work together, and ensuring that local authorities identify need and put support in place in a timely way.
16. A key aim of the Children and Families Act 2014 was to make the SEND system ‘less confrontational and more efficient’, according to the ministerial foreword to the SEND Code of Practice.[7] The reformed system was intended to identify children’s needs early and put support in place quickly, involve young people and their parents and carers in decision-making, and focus more explicitly on what children are able to achieve.
17. However, the experience of the last four years has shown that, while the system and processes may be new, the problems that children and families face remain in many ways unchanged. There have been significant challenges in many areas with implementing the new system. Families have to fight for support to be put in place, children often have to wait a long time for their needs to be assessed and met, and the system appears to lack accountability for decisions that are made about individual children.
18. We have heard from parents that they are given misleading information about things such as the process of applying for an EHC plan for their child. Some of the false ‘facts’ that parents say they were told include: ‘a child’s school has to support an application for EHC assessment’, ‘EHC plans are not available to children below a certain age in this area’, ‘a child will not receive any different support with an EHC plan than they would get without one’.
19. Many parents believe that local authorities make decisions about their child primarily on financial grounds, rather than on the basis of the child’s particular needs. Parents have told us that they do not have confidence that local authorities are committed to following the SEND Code of Practice and making decisions about their child based on what is best for the child.
20. Local authorities have responsibility by law for writing EHC plans, but we know that many of them delegate this task to schools. While this makes sense in some ways, given the knowledge that schools have of an individual child and their needs, it can be a complex and time-consuming task, particularly for schools that have a large number of children with special educational needs, and for special schools.
21. We believe that local authority staff and school staff should receive training in the requirements of the Children and Families Act 2014 and the SEND Code of Practice. At present, it is often the case that parents have a better understanding than local authorities of what the law requires.
22. Parents who are knowledgeable and determined can make the system work for their child, but often at great cost to their family. The onus currently appears to be on parents to know what to ask for, and who, when, and how to ask. For many families, the only way to get the educational provision their child needs is to appeal to the SEND Tribunal.
23. Government figures show that the number of appeals to the First-tier SEND Tribunal has gone up by 27% since 2012/13. In the last year, there was a 54% increase in the number of appeals against the contents of a final EHC plan, and a 26% increase in the number of appeals against a local authority’s refusal to carry out a statutory assessment. Parents win 89% of appeals that go to a full hearing. Autism is the most common type of need identified inn appeals, accounting for 43% of appeals (2,025 cases) in 2016/17.
24. These figures demonstrate that the system is not functioning as it should to provide support for autistic children and means local authorities are spending resources on fighting parents rather than supporting children. With the right levels of support in each area, this wouldn’t be necessary.
The need for a national autism and education strategy
25. We strongly believe that a national autism and education strategy is required, to meet the needs of all autistic children and young people. We urge the Committee to recommend that this is introduced.
26. Two broad groups of autistic children are particularly poorly served by the current education system. One is young people of secondary school age who are academically able but who struggle to cope in a mainstream secondary school environment. The other is children on the autism spectrum who also have a learning disability and complex needs, and whose behaviour may be perceived as challenging.
27. This latter group of children may end up in residential special schools, sometimes a long way from their homes, not because a positive decision has been made that this is the best educational opportunity for them but because everything else has been tried and failed. Good quality residential schools where the full range of a child’s needs can be met around the clock may be the best option for some children on the autism spectrum, but this needs to be the result of proactive decision-making and not a last resort.[8]
28. A national strategy would address the need for a better understanding of autism in schools across the country, and for more strategic commissioning by local authorities of the school places and support that children and young people need. These things will not be achieved simply by more effective implementation of the Children and Families Act 2014.
Better understanding of autism
“Schools are too big, busy and noisy. I became really ill because staff kept putting me in the same situation over and over again and didn’t sort out the problem.” [Young person on autism spectrum]
“The school shattered my confidence – they had no understanding…they were unable to provide ‘reasonable adjustments’.” [Young person on autism spectrum]
29. The National Autistic Society’s Young Ambassadors Group told us that they and other young autistic people face challenges at school including bullying and social isolation, being misunderstood by staff and other pupils, and coping with changes to the daily routine.
30. Poor understanding of autism means that children are often punished by schools for what is seen as bad or disruptive behaviour, when what is often going on is an expression of how anxious a child is in the school environment.
31. An important indication that children’s needs are not being understood and met is the current high level of school exclusions of autistic children. The Government’s own figures show that autistic children are three times more likely to be excluded from school for a fixed period than children who do not have any special educational needs.[9] The ongoing Government review of exclusions is a welcome opportunity to shine a spotlight on why this is the case and how it can be addressed.
32. We welcome the Government’s decision to make training in SEND in general, and autism in particular, a mandatory part of initial teacher training from September 2018.[10] We also welcome the Department for Education’s ongoing support for the Autism Education Trust, which provides training for qualified teachers and other school staff.
33. It is essential that the new framework for initial teacher training is fully implemented, so that all new teachers have a good understanding from the start of their careers of how to teach and support children and young people on the autism spectrum.
Better commissioning practice
34. Understanding the impact of autism and how it can affect the way that children learn and interact at school is a necessary starting point. But for children to thrive and succeed, the right services and support must be available in their area. Children on the autism spectrum have a wide range of needs. There is no single type of education provision that will work equally well for all of these children.
35. While local authorities have less power to place children in specific schools than in previous years, they still have a vital strategic commissioning role to play in shaping the local landscape of educational provision. They should work with schools and other organisations to ensure that provision exists in their area to meet the full spectrum of children’s needs. There are a few areas where there is a range of provision to meet the needs of children on the autism spectrum. Other areas have very little specialist provision, and children have to travel quite far to access it.
36. This requires careful collection of data about who lives in the area the authority covers, and a good understanding of what the data shows: how many children on the autism spectrum live in a particular area, what their specific needs are, where these children go to school, and where they go after they leave school. Local authorities should use this data to plan the ‘pipeline’, identifying children with particular needs who will need specific provision both immediately and in the future. Knowing where children go after they leave school is particularly important for making sure that schools are equipping children for adult life.
37. Local authorities should map what their existing provision looks like, and work out where they will get any necessary additional support from. This may come from neighbouring boroughs or counties, or local authorities may need to develop provision of their own. It should not be necessary for councils to place children far away from their homes.
38. The Local Offer and children’s individual EHC plans should be used as commissioning tools to help local authorities identify where the gaps in services are in their area. This should be a starting point for working with partner organisations to develop and deliver the services children need.
39. A national autism and education strategy would provide the necessary context for local authorities to plan the best possible education provision for autistic children and young people in their area.
Conclusion
40. For many children on the autism spectrum and their families, it is a struggle to get the right school place, an assessment of their needs, additional support from health services, and access to other types of support, such as out-of-school provision. For some children, their educational experience becomes a pathway of failure, and they end up out of educational provision entirely.
41. School can be a difficult and isolating experience for autistic children and young people. But this does not have to be the case: it is not an inevitable fact of being autistic. With the right support, school can be a positive environment and a place where children are able to succeed. However, as things currently stand, too many children are not supported well enough, and are held back from achieving their potential.
42. There is a gap between what the law says should happen, and what families experience. There is also a gap between the needs of autistic children and what is available to support them, which the SEND reforms alone will not tackle. We believe that a national autism and education strategy is needed to deliver improvements in the school experiences and overall wellbeing of autistic children.
43. While many parents are outstanding advocates for their children, good outcomes should not depend on parents being prepared to fight, or having the personal resources to do so. The Government needs to ensure that local authorities have the funding required to meet their obligations under the Children and Families Act 2014. We believe that a lack of resources is not a sufficient reason for local authorities to fail children.
June 2018
[1] Department for Education (July 2017), Special educational needs in England: January 2017 (Table 8).
[2] All Party Parliamentary Group on Autism (2017), ‘Autism and education in England 2017’.
[3] The NHS Information Centre, Community and Mental Health Team, Brugha, T. et al (2012), Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey, Leeds: NHS Information Centre for Health and Social Care.
[4] All Party Parliamentary Group on Autism (2017), ‘Autism and education in England 2017’.
[5] Department for Education (May 2017), Statements of SEN and EHC plans: England, 2017.
[6] Department for Education/Department of Health (January 2015), Special Educational Needs and Disability Code of Practice: 0 to 25 years.
[7] Department for Education/Department of Health (January 2015), Special Educational Needs and Disability Code of Practice: 0 to 25 years.
[8] Lenehan, C and Geraghty, M (2017), ‘Good intentions, good enough?’ – Independent review for the Department for Education.
[9] Department for Education (July 2017), Permanent and fixed-period exclusions in England: 2015 to 2016.
[10] Department for Education (July 2016), A framework of core content for initial teacher training.