Memorandum submitted by National Autistic Society (NAS)
Summary The National Autistic Society regularly hears from parents about the challenges they face in accessing the special educational needs (SEN) system and getting the appropriate support for their children with an autistic spectrum disorder (ASD). Parents want to see a speedier process, more training in ASD and improved transparency. The separation of assessment of need from funding of provision would remove any conflict of interest in the current system and may help to improve accountability. It will not address issues over how local authorities then allocate limited funds. Accountability and transparency needs to be improved throughout the system, and particularly prior to the statementing process, to ensure all children with an ASD receive appropriate support to help them achieve their potential. Introduction 1. Autistic
spectrum disorders are a lifelong developmental disability that affects the way
a person communicates and relates to people around them. People with an
ASD experience difficulties with social interaction, social communication and
imagination known as the 'triad of impairments'[1]. The
scientific consensus is that around one in 100 children have an autistic
spectrum disorder[2]. Currently
10% of all children with statements of special educational needs (SEN) in
maintained secondary schools, and 18% of children in maintained primary schools
have an ASD as their primary special educational need[3].
The National Autistic Society welcomes the opportunity to submit evidence to
the Education and Skills Committee's enquiry into the separation of assessment
of need and funding of provision within the special educational needs
system. 2. The
National Autistic Society (NAS) is the leading charity for people with an
autistic spectrum disorder (ASD) in the UK. It has a membership of 17,000, a
network of around 70 branches, and 90 partner organisations in the autism field. The NAS exists
to champion the rights and interests of all people with autism and to ensure
that they and their families receive quality services, appropriate to their
needs. 3. The
NAS Advocacy for Education service provides advice and information on special
educational needs provision and entitlement for parents and carers. Since its
launch in 2000 it has provided advice and assistance to over 10,000 families.
The service provides advice on entitlements and helps parents to understand the
process of obtaining additional support for their child. It also provides advice
and casework support for parents appealing to the Special Educational Needs and
Disability Tribunal. In addition to this specific advice and advocacy
service, we run a UK-wide Autism Helpline where 5.5% of the 39,000 calls last
year related to education. We also run regular parent support programmes
around the country for parents of children who have recently received a
diagnosis of ASD. 4. We
work regularly with parents who face significant battles to get appropriate
education for their children who have special educational needs. Too often, children's needs are inadequately
acknowledged, and inadequately funded, and the system is perceived as complex
and confrontational by parents and professionals. Many parents feel that they have to resort to the SEN and
Disability Tribunal (SENDIST) to try to obtain appropriate support for their children. An autistic spectrum disorder was cited as
the SEN in around a quarter of tribunal cases in 2004-5, more than any other
disability[4]. In a recent survey 79% of parents of
children with ASD who had gone to tribunal had their appeal upheld either
entirely or in part[5]. The need to
appeal to Tribunal will necessarily involve a delay to the support or placement
that a young person needs and this in turn can have significant impact on their
educational progress, self esteem and mental health, and the process can also
be very costly to families, both emotionally and financially. 5. 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. At its best, the
statementing system provides a comprehensive system for identifying a child's
needs and the provision needed to meet those needs. It provides a legal
entitlement of provision for the child and as such parents value it highly. The NAS believes that many of the
difficulties families face in accessing the SEN system are operational issues,
rather than systemic problems. We
believe that the current SEN and statementing system should be retained, that
it should be made more transparent and accountable, and that those issues
within the system should be addressed. 6. There is
currently a lack of accountability and transparency in the SEN system which
needs to be addressed urgently. Around
one in five of children in schools have a special educational need, but only 3%
of all children have a statement[6]. Parents do not start out wanting a statement
for their child, but many find that statutory assessments and statements are
necessary to secure an entitlement to provision for their child's needs, and to
gain access to the necessary resources to fund that provision. Some families find that they have to appeal
to tribunal in order to get a statutory assessment, then to appeal against the
findings of the assessment in order to get a statement, and then they have to
appeal the contents of the statement. Later
these same parents find themselves appealing again as their child goes through
transistion from one school to another. As a result the parents that we work
with have very strong feelings about the lack of accountability and
transparency within the system. 7. The NAS is currently carrying out a survey on our website to elicit the families' views on how the SEN system might be improved in order to inform our response to the Select Committee's enquiry. It has received a lot of interest with over 160 responses, and responses clearly demonstrate parents' frustration with the operation of the current system. The changes that parents identified as most important in improving the system were: making the process quicker; more training and expertise in ASD; better support and information for parents; and a simplified, more transparent system.
"While there have been improvements in the system over the last few years, it remains incomprehensible to many parents. The system needs to be open and transparent, but in a way that can be easily and simply communicated to parents." [7]
"The LA missed every single statutory deadline for the completion of his statement."
"Children with A.S. [Asperger syndrome] are often overlooked by schools and assumed to be behaving badly or badly parented. A diagnosis of AS is rarely understood by teachers... This leads to misunderstandings by stafd and is extremely damaging to the child."
8. Parents commented that the system often becomes very adversarial and felt that sometimes children need to 'fail' in order to receive any support through a statement. There is a strong desire among parents to see assessment of need being carried out separately from the funding of provision, reflecting the high levels of frustration at the lack of accountability in the system. However, this needs to be balanced by parents' priorities of making the system quicker, simplifying the system and reducing bureaucracy. Other key themes which have come up in the preliminary results include the need for greater consistency of practice across the country and increased range of provision, including specialist provision.
9. The NAS was very pleased that the Committee took up the recommendation of our make school make sense campaign that every child with autism and other SEN or disabilities should have local access to a diverse range of mainstream and specialist educational provision. In response to the Committee's recommendation the Government state that "local authorities should develop a flexible continuum of provision to meet the wide range of children's SEN" [8]. However, we were very disappointed that the Government's recent draft guidance for local authorities on planning local SEN provision, which is due to come into force very shortly, was not clear about this expectation. The draft guidance places a duty on local authorities to demonstrate that each local reorganisation of SEN provision improves local educational provision in terms of "the standard, quality and/or range". The NAS believes that authorities should seek to improve the quality of provision at every opportunity, and that in addition there should be a separate duty on local authorities to improve the range of provision available locally.
"I think what is frustrating is the inflexibility of the type of school provision and indeed of school administration. Different children need different solutions, and the inflexibility at school and LEA management level means that the system will be particularly difficult for autistic children and their families."
Separation of assessment and funding 10. Currently
a local authority makes a decision as to whether a statutory assessment is
required, based on assessments by the school and other professionals, and other
evidence. If appropriate, it will then
carry out a statutory assessment of special educational needs, following which
either a statement of SEN or a "note in lieu" will be issued, setting out the
child's needs. If a statement is
required the child then has a legal entitlement to the educational support set
out in the statement. Otherwise the
child will continue to receive support through the general SEN budget delegated
to the school. 11. The process of statutory assessment fulfils a
number of functions: it should create a detailed picture of the educational
needs of an individual child and the provision needed to meet those needs, and
it assesses eligibility for access to the entitlements and resources available
through a statement to meet those assessed needs. Currently these functions are carried out in one assessment by
the local authority, who then also resources the provision. 12. The NAS is aware that many parents pay for
independent assessments and reports from educational psychologists and
occupational therapists because they want a thorough 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 and detailed 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 or where they have
inadequate knowledge of ASD. In addition, some parents feel there is a conflict
of interest because these expert reports are local-authority funded and used to
determine the level of support the local authority needs to resource for that
child. 13. It is imperative that any assessment body has
professionals who have a good understanding of ASD available to carry out
assesssments and spend enough time with the child to fully understand and
assessment their needs. Lack of
training in ASD and lack of understanding of a child's needs are considerable barriers
to accurate assessment of need, and may present greater barriers than any
conflict of interest. It was
highlighted as one of parents' top two concerns in our web survey. 14. The Select Committee
has highlighted that "There is an inbuilt conflict of interest in that it is
the duty of the local authority both to assess the needs of the child and to
arrange provision to meet those needs, and all within a limited resource". This
conflict arises largely as the result of a lack of resources to meet identified
needs. There is a perception that a
local authority may make an incomplete assessment of needs in order to avoid
having to resource the support to meet those needs. Separating assessment of need from the funding would address any conflict of interest on the
part of the local authority which may prevent an accurate assessment of the
child's needs, and the support required to meet those needs, being made and
recorded. It would underline the high levels of support required, but the resources
must also be available to ensure families can get the support they are assessed
for and entitled to. 15. Unless the rest of the system is made more
transparent and accountable, it is possible that a local authority might raise
the eligibility criteria for access to a statement as an alternative way of
limiting the budget for statements, particularly in the context of a reducing
reliance on statements across the country.
Any body which assesses or funds, whether a local authority or
independent body, must have clear accountability structures and be transparent,
for instance publishing criteria for assessment and eligibility for support
through a statement. The fundamental
reason for an assessment should be to determine the needs of the child and the
provision required to meet those needs. 16. This proposal will not
in itself address the fair and appropriate allocation of limited funds to
resource the levels of support required.
If these issues are
not addressed then families may be left with a more complete picture of their
child's needs, but without any support or funding to address those needs. Within the community care system, families
are entitled to an assessment of need from social services, but many are then
told they do not meet the eligibility criteria and do not receive any services
or support. A similar situation could
arise within the SEN system. Families
who have the funds may be able to pay for the support to meet those needs
themselves, but many will not be able to afford to do so, and their children
will not be any better off. 17. Parents want a simpler and faster system. Any separation of assessment and funding
must ensure that it does not increase the length of the process or its
complexity. 18. There are three points
within the statementing process where there needs to be greater accountability
and/or transparency:
assessment of need; assessment of eligibility for support through a statement;
and funding of that support. This
proposal will achieve greater transparency only in one of these areas. 19. At present the main way that parents can challenge the statementing system when they feel that their child's needs have not been effectively addressed is to take the case to Tribunal, which can be a costly process in terms of time, emotional stress and in some cases finance. There needs to be other means for families to be able to challenge the system and hold local authorities and schools to account in addition to making an appeal to SENDIST. Inspection frameworks and the recently-annonced national disabled children's indicator, to be part of the public service agreements[9], could provide opportunities to make the system more accountable. "If there are disagreements at LEA level there is no system for resolving them same some sort of legal action." Improving accountability and transparency prior to statementing "There is a lot of 'red tape' involved in the process leading up to the statementing process. The time it takes is ridiculous... If support was put in place earlier, a lot of problems would be minimised or avoided, helping the child experience a more settled, productive time in school before support through a statement is given." 20. The vast majority of children with special
educational needs do not have a statement, and the entire SEN system needs to
be improved in order to benefit all children with SEN, especially as many local
authorities reduce their reliance on the use of statements. There are two stages prior to the
statementing process beginning where there needs to be greater accountability
and transparency: schools' use of their SEN budgets; and the process of
deciding whether a statutory assessment is required. 21. The first point was addressed by the Committee
in their report on special educational needs, but remains an issue for many
families, who are unable to access appropriate support through the school and believe
they have no recourse other than to resort to the statementing process. Local authorities have a requirement to
publish information on SEN provision, including what support will be provided
by the authority and what schools are expected to provide from their delegated
budgets. This information must be
easily available and accessible to parents, and sufficiently clear to enable
them to identify what resources their child should be entitled to through
delegated budgets, and hold the school to acount. Local authorities are not fulfilling their legal duties on
publishing information about SEN on the internet. A survey in 2004 by the
Advisory Centre for Education 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. The core offer for disabled children recently announced by the
Government[10] provides a
new opportunity to reinforce these duties. 22. Refusal to assess is the most common category of Tribunal appeal, making up 38.5% of cases in the last year[11]. One way to ensure greater consistency of decision making on whether to make a statutory assessment is to establish local moderating groups which consider all referrals for statutory assessment and ensure consistency of decision making. These are recommended in the SEN Code of Practice and could be a valuable tool in increasing local accountability. This model could also be extended beyond decisions about statutory assessment to improve accountability on decisions about statements: In the interest of establishing agreed local interpretation, LEAs may operate moderating groups to support them in making consistent decisions [as to whether to make a statutory assessment]. Such groups can include head teachers, SENCOs, governors, educational psychologists and colleagues from health and social services. LEAs may use similar groups of professionals to consider the evidence for all referrals for statutory assessment, so that the LEA have the advice and support of a multi-professional team in making decisions as to whether to carry out assessments. In the latter case, the group cannot take decisions on individuals without being fully informed about the particular child and having access to all the evidence. Locally agreed processes of these kinds are good practice, but the role of these groups must be clear, public and open to scrutiny. They can help to support consistent and transparent decision-making by schools and LEAs. SEN
Code of Practice paragraph 7:37 23. Finally, once a parent has appealed to SEN and Disability Tribunal and their appeal has been upheld, there are currently no mechanisms to enforce the implementation of orders made by SENDIST. A survey of clients to the NAS Advocacy for Education Service found that in only six of every ten cases were tribunal orders fully implemented. Of the remainder, a third were partially implemented, and one in ten decisions were not implemented at all[12].
24. SENDIST must have more powers to ensure that orders are implemented
more effectively and that local authorities fulfil their legal duties in
relation to children with special educational needs. We welcome opportunities for the Tribunal to trial ways of
improving the system, such as the recent pilot case management trial. The NAS would like to see more resources
available to the Tribunal to facilitate this. 25. In order to make the system work better to achieve the best outcomes for children with SEN and their families, schools and local authorities need to be accountable and transparent at each of these different stages. This will increase parental confidence throughout the system and relieve the pressure to obtain statements in order for children to receive the support they need.
July 2007 [1] 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 [2] Baird G. et al (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) The Lancet, 368 (9531), pp.210-215 [3] DfES (2006). Special educational needs in England, January 2006 [4] Special Educational Needs and Disability Tribunal (2005) Annual Report 2004/05 [5] Batten et al (2006) make school make sense: autism and education - the reality for families today , London: NAS [6] Education and Skills Select Committee (2006) Special educational needs [7] Quotes are from our web survey unless otherwise stated. [8] Government response to the Education and Skills Committee report on Special Educational Needs, October 2006, p26 [9] HM Treasury/DfES (2007) Aiming higher for disabled children: better support for families [10] HM Treasury/DfES (2007) [11] SENDIST (2006) Annual report 2005-6 [12] NAS (2003) Autism and education: the ongoing battle - experiences and outcomes of the Special Educational Needs and Disability Tribunal, London: NAS |