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Memorandum submitted by Supporting Together Those with Autism and Aspergers in Redbridge (STARR)

 

1 STAAR

 

1.1 STAAR is a voluntary group for parents and carers in Redbridge who have a child with autism and/or aspergers syndrome. It is run by parents who have one or more children with autism or aspergers syndrome. We have over 100 members. Our aims are: to provide information and support for parents and carers; to raise awareness and highlight the needs of those with autism, aspergers and related disorders; and to provide social opportunities for children and adults with autism, aspergers and related disorders and for their families and carers.

 

1.2 We wish to input because we have been following the debate about SEN and the response to the Committee's 2006 Report and we feel that despite all the national strategies and policies that are in place, services for our children are getting worse not better. Some of our children attend mainstream schools (even those with severe needs), some attend special schools and some are home educated (not necessarily by choice, but because they have been excluded).

 

2 Summary of our position

 

2.1 Our position is:

 

· Special Educational Needs should not be treated as a generic group. Those with autism and aspergers syndrome are a separate group within the SEN family because their needs are complex, they have a life-long profound disability, and they require multidisciplinary assessments and interventions to meet their SEN.

 

· We think the current problems in securing provision for our children are largely caused by lack of funding.

· We do not want our children to be used "as a stick to beat schools" on improving delivery of SEN provision, when in fact the resources and capacity are not there.

 

· A way needs to be found of establishing honesty and trust in the system where timely and honest assessments are made ensuring all our children have the support and resources they need to make real and measurable progress at school.

 

· There is not an easy solution to the issue of assessments being carried out outside the local authority, in part because children with autism and aspergers syndrome require multidisciplinary assessments. There is also little point in having gold plated assessments without the funding for provision.

· We believe that the Panel should be reformed, redefining its role and membership and involving parents and schools more directly. Improved understanding of their legal obligations to our children and the precise nature of our children's disability needs to be part of this.

· There needs to be much earlier diagnosis and a standard package of multidisciplinary intervention made available for children with autism and aspergers syndrome from diagnosis. And more investment in special schools, outreach services and IT resources.

· A standard package of training needs to be developed now for all in local government education, school governors, teachers and others explaining autism and aspergers syndrome, how to best educate our children and their legal responsibilities under the Education Act and Disability Discrimination Act (and what they mean in practice). At the moment this area is a big mess.

 

· The raft of strategies and policies written by the Department of Health and the Department for Education and Skills are at best making little or no noticeable difference to our children's lives and at worst harming them. The Government also needs to immediately revisit its 2004 Strategy for SEN as it is dangerously general, in parts misleading and in parts wrong in respect of obligations to our children under the Education Act and the Disability Discrimination Act. More political will is needed - we believe in the form of a Cabinet Minister nationally and a fully accountable autism coordinator at local level - to sort this out as a matter of urgency.

 

· The Tribunal System is not open to all and legal aid should be granted to disabled children. Too much reliance is placed currently on parents not enforcing their rights. We appear to be seen as a soft target.

 

· With the splits in budgets from central government, there need to be more qualitative outcome targets for our children to ensure that our children make real and measurable progress and that education just do not simply pass the buck to social services and/or health.

· SEN generally should be seen as less of a backwater and given it the prominence it deserves. Poor pay for Learning and Support Assistants (LSAs) and lack of a career path, especially in mainstream schools, also needs to be addressed.

· A compulsory action plan needs to be developed for leisure activities for all our children with funding attached.

 

· More serious outcome-focussed long term planning is needed for post-16 provision.

3 The current arrangements and the problems we face

3.1 Assessment of children with autism and aspergers syndrome needs to be multidisciplinary because of the nature of their disability. It is complex and affects core areas of functioning, namely social interaction, communication and imagination. Our children, in particular those with autism, also present with additional sensory impairments, learning difficulties, repetitive activities and in some cases feeding disorders. A summary of the nature of the disability is enclosed at Annex 1.

 

3.2 In relation to determining SEN, currently our children receive assessments from an educational psychologist, the Early Years Assessment Service (who support our children before statements are in place), a speech and language therapist (SLT), a paediatrician and, at the time of diagnosis, a clinical psychologist (or child psychiatrist). Although necessary, assessments are not currently available from Occupational Therapy (OT) and mainly those who pay for private reports get access to this service.

 

3.3 We believe statements serve important purposes. They define our children's needs and give certainty and accountability about the amount and nature of the specialist intervention our children's needs require. Without that certainty, parents will have no control and it will be a free for all with our children most likely to lose out because of the lack of general accountability and the fact that they need higher levels of provision across more professional groups than other SEN children because they have such a complex disability.

 

3.4 Under the present arrangements, difficulties arise for our members in a number of ways. These include:

· Assessments are based with an eye to funding and what can be afforded, rather than the needs of the children. We are then told to be grateful for the little we get, in terms of Specialist teaching time (from Specialist Schools' Outreach Service) Learning and Support Assistant (LSA) time, SLT time (maybe none, or very little), and no OT - when in fact it does not meet our children's needs.

· The whole provision for children with severe needs in mainstream schools is woefully inadequate.

· In all cases the number of LSA hours are recommended or proposed with a view to what the Panel might approve and so what can be afforded, and, bearing in mind that, as we are so often reminded, schools have to make a financial contribution too. In practice, schools appear to have no funding for this and other (older) children end up covering our children at critical times like breaks and lunch. Placements can break down because of this and our children are put at risk.

 

· There is no OT input despite the fact that autistic children suffer from sensory impairments. This is slowly changing due to increasing recognition of its significance among professionals and pressure from parents.

 

· Schools and other professionals sometimes block parents' requests for more LSA or other provision, or even for assessment, because it is anticipated the request will be refused by Panel. This may also be because it is mistakenly considered that verbal ability means the child is not disabled as for example in the case of those with aspergers syndrome.

 

· Professionals like SLTs write reports which are general without committing resource using words like "regular" support, which may mean a review once a term, if lucky. Or parents are told to get private reports or get them in order to get an acceptable level of provision.

 

· Panels sometimes refuse requests for provision or extra provision even where all professionals involved with a child agree that it is needed. Parents who threaten to go to or go to Tribunals may then get it.

 

· No provision is made for training or resources in mainstream schools especially for those with very differentiated curriculums.

 

· More hidden parts of the disability such as anxieties which can have a very profound effect on behaviours are ignored. This is one of the areas we need more regular on-going clinical psychology input which is currently not available.

 

· Some of our members have been told that perhaps children with aspergers syndrome do not need statements. This belies the fact that aspergers children have a life-long disability which gives rise to special educational needs which manifests itself in different ways, as with children with autism.

 

· There is little or no understanding of the rights our children have under the Disability Discrimination Act and reasonable adjustments are either not understood or made or both. And children are being excluded, refused permission to go on trips or required to do things like sit in assemblies that can cause extreme anxieties to our children and so on as a result.

 

3.5 There are huge funding gaps in provision for our children. And numbers of children with SEN are growing. We want to address these issues seriously because they feed into a culture of under-defining needs and making provision which is less that it should be. As we understand it Corporate Performance Assessments require money to be directed to where targets are and additionally the monies that come from central government are not enough to meet the needs of SEN children.

3.6 Our children need one-to-one multidisciplinary interventions. Those of us with the wherewithal can challenge lack of provision under the relevant legislation, others not. This also has a huge effect on parents' trust of the professional advice given by professionals which is also a major issue.

3.7 Moreover it is a false economy because the long term cost will be greater since interventions given when children are young (before and at primary level) have the best long term benefits for overall development and achievement.

 

4 How might assessment of SEN needs be undertaken other than by the relevant local authority without the establishment of a new separate agency for the purpose?

 

4.1 As we have said assessments of children with autism and aspergers syndrome need to be multidisciplinary.

4.2 We know that there are a range of professionals (educational psychologists, SLTs, OTs) who work privately, not for the public sector, who could undertake assessments, but we know there is a cost attached to this and we do not have data to be able to compare this cost with that of its being undertaken by the local authority. We doubt however if there would be sufficient private professionals available to undertake this service nationally. Without more radical reform of the current funding arrangements where the funding matched the needs of individual children rather than as now coming in a limited pot which is not enough, we are not convinced that it is the solution to the problem which we believe is more about inadequate funding.

 

4.3 Those who define the needs currently have an eye on the resource implications rather than the needs. That is why we believe the needs tend to be underdefined or not defined at all. And certainly there has been chronic under-funding of services with very few speech and language therapists, occupational therapists and clinical psychologists being in post and not enough to meet the needs. This is in addition to problems with the SEN budget which is getting worse as numbers of SEN children rise. You cannot scrimp on SEN provision and expect successful placements, especially for children like ours.

 

4.4 It is also the Panel which ultimately decides on the level of provision in statements. Those who assess currently do so with an eye on what the Panel might accept or not as the case may be. This group of people is not usually known, the process is very secretive and parents' views seem to account for little.

 

5 How might local accountability for assessment be maintained if the local authority does not directly undertake the assessment?

5.1 We do not know the answer to this question, nor are we sure what would be the position were the funding issues not to be addressed alongside any change in the arrangements for assessment. We are not going to get anywhere with gold plated assessments if there is not the funding to meet the identified needs.

5.2 There also seem to us to be risks that the same culture of underdefining needs could well feed into any independent assessment process if the funding issues are not addressed.

5.3 We understand that this funding comes from central government and that a combination of lack of PCT targets for children and pressure from central government to keep SEN budgetary increases to below inflation levels means that our services (e.g. SLT and OT) get cut or are under resourced so as to cover budgetary pressures elsewhere in the NHS and numbers of SEN children are growing and budgets not.

 

6 What other issues need to be addressed in order to make the separation of assessment and provision effective?

 

6.1 We have identified above funding and constitution and membership of the Panel as two important issues that need to be addressed. Others are set out below.

Earlier diagnosis and multidisciplinary intervention

6.2 To give our children (and others with SEN) the best long term development potential, it is essential to have early intervention. Without this, by the time they get to school poor learning behaviours can already be quite entrenched. Despite all of the standards and policies that confirm the importance of early invention - for example the National Services Framework (NSF) for Children, Young People and Maternity Services, its Disabled Children's standard and its ASD protocol of best practice (Gateway ref: 3820) dated 1.9.2004; Valuing People: A New Strategy for Learning Disability for the 21st century; Autistic Spectrum Disorders: Good Practice Guidance - it is not happening in practice. The main reason seems to be lack of money and accountability. We need more urgency about and funding for earlier diagnosis which does not now happen until aged 3 or later. And multidisciplinary invention does not generally happen for our children until they get a statement which is far too late.

6.3 In our recent paper (attached at Annex 2) given to the Prime Minister by Ivan Corea of the Autism Awareness Campaign and Lee Scott MP for Ilford North, we also argue inter alia that a standard package of multidisciplinary intervention should be agreed for our children from a very young age which should continue automatically through school (with provision reducing only as needs reduced or changed). This is in line with the NSF Disabled Children's standard and its ASD protocol of best practice and should include:

· One to one Clinical psychology to deal with child's behavioural problems and anxieties and to help parents;

· (where appropriate) one to one child psychiatry services for children and parents;

· One to one speech and language therapy to help develop language and communication skills and to help parents support their children in this area at home;

· One to one occupational therapy to identify and address gross and fine motor difficulties and sensory impairments;

· Specialist teaching (as soon as diagnosed) using Applied Behaviour Analysis/ Verbal Behaviour and other proven methods to help develop concentration, cognitive ability and good learning behaviours and to help prepare for school;

· Psychotherapy for parents to ensure they have come to terms with the diagnosis, they interact positively with the child and it does not have an averse affect on siblings;

· (before school) Educational Psychologist (to assist and advise on preparation for school);

· Social worker to devise a respite package

 

6.4 The standard packages of multidisciplinary help called for also needs to be made available now to the huge numbers of autistic and aspergers children in schools who do not have it. It is never too late for this help to be given, although the chances for long term development for much greater the earlier it is given.

IT equipment and resources

6.5 This package also needs to include access to and on-going training for IT equipment and services for autistic children (teachers and LSAs). At present some get a computer, but no one is trained and this is very inefficient and a wholly under-used resource. There are also lots of free IT resources which could help our children at home and at school that are woefully untapped.

 

Government strategies and policies

6.6 The Government also needs to revisit its 2004 Strategy for SEN - "Removing Barriers to Achievement - The Government's Strategy for SEN"[1] - as it is dangerously general, in parts misleading and in parts wrong in respect of obligations to our children under the Education Act and the Disability Discrimination Act. This is harming our children. It is also linked to funding.

6.7 For example, it suggests that children with severe and complex needs be sent to special school (paragraph 2.14 and the second page of chapter 2). This is unlawful because of the obligation not to discriminate against the admission of disabled children in section 28A Disability Discrimination Act 1995. It also states that children may be excluded for challenging or bad behaviours (paragraph 2.24 and 2.26), but the fact is that under Section 28A(4) of the Disability Discrimination Act (DDA) 1995 it is unlawful to discriminate against a disabled pupil for reasons relating to the pupil's behaviour which is occasioned by his/her disability by excluding him/her from school. Rather schools should be responding to instances of bad behaviour, not by immediately excluding which is discriminatory because a non-disabled child with good behaviour would not be excluded. That is the test of discrimination established in the DDA. They should instead be making all reasonable adjustments for our children to manage their behaviour occasioned by his disability. Schools are not doing this and are not trained or equipped to do it.

 

6.8 Additionally Local Authorities and now Children's Trusts are following the recommendations in "Removing Barriers to Achievement - The Government's Strategy for SEN"[1] and seeking to find ways of saving money by further reducing provision in or removing statements for our children. They say that Central Government has told them to do this. The main motivation is about keeping SEN budgets down to below inflation increases as set out in the Strategy document: "there has been pressure for above-inflation increases in local authority spending in SEN...local authorities that have worked with schools to increase the delegation of SEN resources for individual pupils have been the most successful in containing increases in centrally managed budgets for pupils with statements." (box after paragraph 1.19). But the fact is that there are no effective outcome measures for SEN pupils or means of ring fencing this money outside of Statements. It is also clear in the SEN Strategy Document that reducing statements should be a long term strategy which has at its heart capacity building in schools. We are gravely concerned about this.

6.9 With numbers of our children and other SEN children rising sharply, we are now facing an even greater crisis for our children if these funding problems are not admitted by local authorities and addressed by Central Government. If Corporate Performance Assessment is keeping local authorities from being honest about the funding issues and their not being able to meet its legal obligations to our children, then that would be perverse. There needs to be honesty at all levels for our children's sake.

 

Training

6.10 A standard package of training needs to be developed now for all in local government education schools, governors, teachers and LSAs covering explaining autism, how to best help to educate our children and their legal responsibilities under the Education Act and Disability Discrimination Act. They and everyone else involved, including schools, also need to understand the nature of our children's disability and how it affects their capacity to learn and participate in a school environment. At the moment this whole area is a big mess at national and local level. And no one is prepared to stand up and do something about it.

Qualitative outcome targets

6.11 With the splits in budgets from central government, there need to be more qualitative outcome targets for our children now to ensure that education just do not simply pass the buck to social services and maybe health. We do not want babysitting for our children at school, but for them to have the same rights to challenging educational provision as non-disabled children. This applies in particular to those with greater learning difficulties and more challenging behaviours. In many cases these behaviours can be linked to boredom and lack of understanding of the disability in schools.

More investment in special schools and outreach teaching and improved design of mainstream schools

6.12 We believe that inclusion is a good thing for our children and for wider society. But in some cases, children cannot cope with mainstream schools and special schools are needed. More investment is needed in existing special schools (extra places are needed), more special schools, specialist units attached to mainstream schools and funding more specialist outreach teachers to work with our and other SEN children in mainstream schools.

6.13 Consideration also needs to be given to more suitable building design and quieter teaching areas to enable more young children with autism to go to mainstream

 

Tribunals are not accessible for many parents

6.14 Many parents do not understand their children's rights under the Education Act or under the Disability Discrimination Act, but even if they did many might not be able to enforce it because it requires confrontation and money when parents are usually struggling to cope.

6.15 It has to be recognised therefore that Tribunals are not an acceptable way of enforcing children's rights to educational provision under SEN. Those of us who have been forced to go down this route have found it to be stressful, expensive and confrontational. You have to get private reports and private experts to challenge the opposing views of local authorities and maybe also legal opinion if you cannot represent yourself. It is a route that is only available to the better off, articulate and those who are not afraid to confront and challenge. It is also more than most can bear because of the huge stress of living with our very disabled children every day. This applies both the SEN provision and to disability discrimination.

6.16 If Tribunals are to continue as now, legal aid should be granted to disabled children. Too much reliance is placed currently on parents not enforcing their rights. We appear to be seen as a soft target.

6.17 Information packs should also be provided for parents about their child's legal entitlements and access to services, but the standard multidisciplinary package of provision should be automatic so that everyone does not have to fight for it, as the cost to all is greater in terms of inefficiency and the longer term cost of a lesser developed child/adult.

 

Improve the image and significance of SEN and LSA pay

6.18 SEN seems historically to have been something of a backwater and given less prominence than it deserves. Although there are some excellent people at all levels, not enough of the right calibre of people appear to be attracted to it. And poor LSA pay also needs to be addressed. LSAs pay an essential role in successful school placements for our children (especially in mainstream) and their pay is not reflective of this. Nor does there seem to be any career structure for LSAs. We greatly value good LSAs as worth their weight in gold because they believe in our children and try to do their best for them in schools with support from multidisciplinary teams.

 

Leisure

6.19 "Removing Barriers to Achievement - The Government's Strategy for SEN" talks a lot about improving access to leisure opportunities. There is virtually none for our children, as they often cannot access mainstream leisure activities without one-to-one support (which they do not have), are not welcome or cannot because of their sensory issues. Specialist provision is limited and very oversubscribed. And our children are often overweight because of poor diet (part of the autism). A compulsory action plan needs to be developed for leisure activities for all our children with funding attached.

 

Lack of long term planning and limited post-16 provision

6.20 There is no long term planning for our children and what they might do post-16 (unless they have a place in a special school or college) or what contributions they might be able to make to society through the workplace. If our children have the right mix of multidisciplinary interventions from a very early age, their developmental potential is greater. As it stands they will be sitting at home with elderly parents.

6.21 Education provision should be extended up to the age of 25 for autistic children to give the maximum chance of achieving some degree of long term independent living.

 

7 What models from other countries could usefully be drawn on to demonstrate how separation of assessment and funding for special educational needs might be achieved?

 

7.1 We know there is a lot of good practice in other countries for the diagnosis and education of children with autism and aspergers syndrome. We believe that the UK should look to best practice overseas and seek to learn from it, in particular Sweden where the funding matches the assessment of needs of each individual child, rather than having an inadequate pot as in the UK and also Israel where their early diagnosis and early interventions are very impressive among other things. We understand that Lee Scott MP has been investigating best practice in these countries and we encourage you to ask him about it. We also understand that there may be relevant good practice examples in Australia, South Africa and USA.

 

July 2007


ANNEX 1

NATURE OF THE DISABILITY OF CHILDREN WITH AUTISM AND ASPERGERS SYNDROME[2]

 

Autism is a complex life-long incurable developmental disorder due to physical dysfunction of the brain. The brain functions affected are those concerned with the drive to interact with other human beings that is inborn in people who do not have autistic disorders. This results in what is often referred to as the 'triad of impairments' (Wing, 1992) affecting social interaction, communication and imagination. All people with ASDs have difficulties in these three areas, as well as others set out below, each child being affected differently.

 

In the case of communication, children with autism:

· may not have the ability to communicate or appreciate the social uses and the pleasure of communication. This is true even of those who have a lot of speech which they use to talk at others rather than with them;

 

· may not understand that language is a tool for conveying information to others. They may be able to ask for their own needs but find it hard to talk about feelings or thoughts and will not understand the emotions, ideas and beliefs of other people;

 

· may have little or no speech, or echolalia and repetitive speech;

 

· may not really understand the meaning of gestures, facial expressions or tone of voice. Others who do may use gestures that are odd or inappropriate;

 

· understand and use language very literally, but with peculiar choices of words and limited content of speech.

 

Additionally children with Aspergers Syndrome:

· may speak fluently but not take much notice of the reaction of others listening to them and may appear insensitive to the feelings of others;

· despite having good language, may sound over-precise or over-literal and may become frightened or confused by jokes or literal statements (e.g. 'she bit my head off').

 

In the case of social interaction, children with autism:

· may often appear aloof and indifferent to other people, especially other children;

 

· may passively accept social contact and even show pleasure, but will rarely make spontaneous approaches;

 

· may approach others but in an odd, inappropriate or repetitive way, paying little or no attention to the responses of those they approach.

 

Additionally, children with Aspergers Syndrome:

· may try hard to be sociable but still find it hard to understand non-verbal signals, including facial expressions.

 

In the case of imagination, children with autism:

· may be unable to play imaginatively with toys or with children or adults;

 

· may tend to focus on minor or trivial things around them, e.g. an earring rather than the person or a wheel rather than the train;

 

· may have a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively;

 

· may miss the whole point of pursuits that involve words such as social conversation, literature and verbal humour.

 

Additionally, children with Aspergers Syndrome:

· will find it hard to imagine what other people are thinking and feeling, so can appear socially less skilled, naive and sometimes rude;

 

· may have difficulty choosing between different options and imagining future events unless they can actually see them or experience them first hand;

 

· while often excelling at learning facts and figures, find it hard to think in abstract ways. This may cause problems at school where children will have difficulties with certain subjects such as literature.

 

Over and above all of this, the disability also involves repetitive activities. In the case of children with autism:

· at a simple level this might involve flicking fingers or an object. More complex signs might include an insistence on following an identical route to certain places, rituals or the repetition of odd bodily movements. This behaviour may be associated with anxiety;

· it may also form an intense attachment to particular objects for no apparent purpose, arrange objects in lines or patterns, or collect things like pebbles. They may be fascinated by certain topics.

 

In the case of children with Aspergers Syndrome:

· they may be very upset by any unexpected changes in routines or insist on routines especially when young;

 

· at school may get upset by sudden changes such as alteration to the timetable;

 

· often prefer to order their day according to a set pattern with deviations causing anxiety and upset.

 

Children with autism and Aspergers Syndrome may also demonstrate what is sometimes referred to as challenging behaviours, such as running away, kicking, biting and so on. This is often as the result of fear, stress or misunderstanding of social situations. They may also suffer from learning difficulties, which can be severe.

 

All autistic and Aspergers children are also likely to suffer to a greater or lesser degree from a whole range of sensory impairments, because the sensory filter in their brains does not work in the same way as non-disabled children. This requires additional specialist understanding and intervention (usually from specialist occupational therapists). Each of the seven sensory systems can be affected in some way, for example:

 

Tactile (touch): children may find unexpected touch uncomfortable; show an unusual response to pain; fidget; find certain textures of clothing irritating/uncomfortable; enjoy certain textures;

 

Vestibular (balance): children may avoid physical activity; be oblivious to heights; need to jump up and down a lot; have difficulties with balance;

 

Proprioception (body awareness): children may be clumsy; have difficulty judging body position in relation to others; chew on clothes, pencils or other objects; enjoy rough play.

 

Visual (sight): children may be more comfortable looking out of the corner of their eye (using peripheral vision); not be able to screen out unnecessary information; notice fine detail; be a visual learner.

Auditory (hearing): children may be very uncomfortable with certain noises (e.g. school bell, hair dryer); hear far away sounds; hold hands over their ears where there is a lot of noise; not respond to his/her name.

 

Gustatory (taste): children may be sensitive to certain textures and tastes of food; eat food only when cooled; hate the taste of toothpaste.

 

Olfactory (smell): children may be sensitive and therefore distracted by certain smells; limit diet to neutral smelling food; sniff people because they recognise them by their smell; not wish to change clothes.

 

They may also suffer from poor motor co-ordination; problems with posture and movement; and problems with sleeping, eating and drinking. All of these will also require specialist interventions.


ANNEX 2

Problems for ASD children in health, education, social services and leisure[3]

 

As numbers of autistic children rising significantly, we are facing a pandemic. The Americans and others are waking up to this, but we have not in the UK. Autism is an invisible disability. If every child with autism had a visible disability there would be uproar about lack of provision set out below. And despite all the rhetoric parents are not being consulted or involved in policy development.

 

Health

· No money to fund early diagnosis or early (multidisciplinary) interventions or to support parents after diagnosis

· Children not likely to be considered before 3, despite symptoms from about 18 months (e.g. not waving, limited eye contact)

· Diagnoses delayed further to avoid committing resources - parents told children OK or a bit slow in developing, when they are actually autistic

 

· Split between PCTs (for speech and language, occupational therapy etc) and mental health bodies (for clinical psychologists) means that no one is really responsible (The Childrens' Trusts will not change that)

 

· Virtually no health visitors

· No PCT targets for children's services (a disgrace!) so monies taken from their budgets to fund shortfalls leading to chronic under funding

 

· Lack of biomedical interventions available on NHS

 

Education

· Lack of early intervention and no support for parents means poor learning behaviours (e.g. lack of concentration, inability to sit) and sensory difficulties (e.g. jumping, making noises, holding ears) are quite pronounced by the time our children get to school

 

· Lack of money means that authorities as definers of needs do so with an eye to funding constraints. So needs are under defined and provision is always less than needs (e.g. a few hours LSA time a week with no provision for resources or expert interventions)

 

· Virtually no available training about autism, how to deal with our children, how to teach them (or about legal obligations) for anyone in schools including Learning Support Assistants and no money to fund it

· Limited or no help for parents at home when expert help is needed (e.g. for sensory, behavioural or language and communication problems). This means that parents cannot often support school work in the home

 

· Schools and LEAs are not putting into practice their responsibilities to our children under the Disability Discrimination Act

 

· The Guidance from Central Government which Councils are following in seeking to reduce statements is also not clear enough and is even misleading on the legal obligations for our children[4]

· Many parents do not understand their children's rights under the Education Act or under the Disability Discrimination Act, but even if they did many might not be able to enforce it because it requires confrontation and money when parents are usually struggling to cope

 

· Mainstream schools not suitable for all autistic children because of sensory impairments (too noisy, too many people, too much distraction)

 

· Places limited in ASD special schools (or none at all)

· Children excluded from schools (officially and unofficially) and placements break down. Schools are increasingly using "unofficial" exclusions to get round the reporting rules (there is no paperwork)

 

· Parents' need close relationship (or partnership) with schools to make placements work (especially in mainstream) - but schools often object

· Parents take children out of school in frustration and home educate or try ABA programmes (often remortgaging or borrowing heavily to do this)

 

· Local Authorities and now Children's Trusts are following the recommendations in "Removing Barriers to Achievement - The Government's Strategy for SEN"[5] and seeking to find ways of saving money by further reducing provision in or removing statements for our children. They say that Central Government has told them to do this. The main motivation is about keeping SEN budgets down to below inflation increases as set out in the Strategy document: "there has been pressure for above-inflation increases in local authority spending in SEN...local authorities that have worked with schools to increase the delegation of SEN resources for individual pupils have been the most successful in containing increases in centrally managed budgets for pupils with statements." (box after paragraph 1.19). But the fact is that there are no effective outcome measures for SEN pupils or means of ring fencing this money outside of Statements. And with numbers of our children and other SEN children are rising sharply, we are now facing an even greater crisis for our children if these funding problems are not admitted by local authorities and addressed by Central Government. If Corporate Performance Assessment is keeping local authorities from being honest about the funding issues and their not being able to meet its legal obligations to our children, then that would be perverse. There needs to be honesty at all levels for our children's sake.

· There is no long term planning for our children and what they might do post-16 (unless they have a place in a special school or college) or what contributions they might be able to make to society through the workplace. If our children have the right mix of multidisciplinary interventions from a very early age, their developmental potential is greater. As it stands they will be sitting at home with elderly parents.

· SEN have also been largely treated as a homogeneous group when in fact they are not. Autistic children are at the more severe end because of the nature of their SEN and the complexity of their additional disability. The guidance available from central government is far too generalised which is seriously affecting provision for our children at the local level.

 

Social services

· Services not available until there is a diagnosis, which because this is delayed means that families struggle for a long time on their own

 

· Numbers are growing and budgets are not

 

Leisure

· "Removing Barriers to Achievement - The Government's Strategy for SEN" talks a lot about improving access to leisure opportunities. There is virtually none for our children, as they often cannot access mainstream leisure activities without one-to-one support (which they do not have), are not welcome or cannot because of their sensory issues. Specialist provision is limited and very oversubscribed. And our children are often overweight because of poor diet (part of the autism).

Solutions to Problems Raised

 

To address these problems, we need real political will, better joined-up government and more money for health and education NOW.

 

Given the numbers of children involved, the extent and seriousness of the problem and the cost to society of not getting this right we want a Cabinet Office Minister appointed immediately with specific responsibility for autism to sort out the mess. They would also bring much needed strategic management and oversee capacity planning which appears to be non-existent. And they could direct greater efforts to develop real qualitative outcome measures for our children and increased investment in evidence based research for biomedical, behavioural and educational interventions.

 

A fully accountable Autism Co-ordinator needs to be appointed immediately at local government level. At the moment, no one is accountable, provision from different services is piecemeal and our children are far down the list of priorities despite all of the legal obligations on local authorities. An Autism Co-ordinator should coordinate a multi-disciplinary, multi-agency  senior team of officials, chaired by the Directors of Childrens' Trusts or equivalent, with a statutory annual reporting cycle and national as well as locally set targets, performance managed by a relevant government department and responsible to a Cabinet Member for Autism. Funding also needs to be ring fenced and service level agreements introduced.

 

Health

 

· More money is needed immediately to fund earlier diagnosis, clear backlogs (2/3 years in many authorities), provide support for parents and early interventions. Investment in expertise to deliver diagnosis.

· A standard package of multidisciplinary help should be agreed for our children for early intervention which should continue automatically through school (with provision reducing only as needs reduced or changed). This should include:

o One to one Clinical psychology to deal with child's behavioural problems and anxieties and to help parents;

o (where appropriate) one to one child psychiatry services for children and parents

o One to one speech and language therapy to help develop language and communication skills and to help parents support their children in this area at home

o One to one occupational therapy to identify and address gross and fine motor difficulties and sensory impairments

o Specialist teaching (as soon as diagnosed) using Applied Behaviour Analysis/ Verbal Behaviour and other proven methods to help develop concentration, cognitive ability and good learning behaviours and to help prepare for school

o Psychotherapy for parents to ensure they have come to terms with the diagnosis, they interact positively with the child and it does not have an averse affect on siblings

o (before school) Educational Psychologist (to assist and advise on preparation for school)

o Social worker to devise a respite package

 

· This package could be delivered in the home, in clinics or later in dedicated units designed to address the child's level of functioning, quality of life and to prepare for school placement.

 

· Standard packages to be put in place as soon as parents' concerns are confirmed (very easily done) and diagnosis carried out as early as possible without waiting until 3, 4 or older. That is too late.

· Targets are needed for childrens' services generally (to ensure that the PCTs cannot keep raiding those budgets to fund shortfalls elsewhere) and for timely diagnosis of and putting in place these multidisciplinary help packages for autistic children

· More money and targets specifically for health visitors

· Bring mental health services within the PCT or children's trust where they are required for autism diagnosis and support and to ensure accountability[6]

· There needs to be investment now in biomedical interventions[7]

· More expertise to be developed and made available on feeding because autistic children are often very faddy and picky eaters which causes longer term health problems. At the moment, it tends to be swept under the carpet unless parents kick up a real fuss.

 

Education

 

· More money is needed NOW from central government to ensure local authorities can meet their legal obligations to autistic and Aspergers children under the Education Act and the Disability Discrimination Act. As provision is already inadequate; pressures to keep increases in SEN budgets to below inflation are leading to cuts in provision; and numbers are rising sharply there is a real crisis for our children.

· Special Educational Needs should not be treated as a generic group. Those with autism and Aspergers Syndrome should be seen as an entirely separate group within the SEN family because their needs are complex and they have a life-long profound disability.

· The Government also needs to immediately revisit its 2004 Strategy for SEN as it is dangerously general, in parts misleading and in parts wrong in respect of obligations to our children under the Education Act and the Disability Discrimination Act. This is harming our children. It is also linked to funding.

 

· The standard packages of multidisciplinary help called for under health need to be made available now to the huge numbers of autistic and Aspergers children in schools who do not have it. It is never too late for this help to be given, although the chances for long term development for much greater the earlier it is given. It also needs to include provision for training for all staff in schools and for training for Learning Support Assistants (LSAs).

 

· This package also needs to include access to and on-going training for IT equipment and services for autistic children. At present some get a computer, but no one is trained and this is very inefficient and a wholly under-used resource.

 

· A standard package of training needs to be developed now for all in local government education schools, governors, teachers and LSAs covering explaining autism, how to best help to educate our children and their legal responsibilities under the Education Act and Disability Discrimination Act. At the moment this whole area is a big mess.

 

· With the splits in budgets from central government, there need to be more qualitative outcome targets for our children now to ensure that education just do not simply pass the buck to social services and maybe health. They also need to be required to provide the standard package of provision for all our children to avoid parents having to fight for it.

· The Government should look abroad for examples of good practice given there are so few in the UK (Australia, South Africa, Israel, USA).

· Education provision should be extended up to the age of 25 for autistic children to give the maximum chance of achieving some degree of long term independent living.[8]

· Remove the post code lottery by investing in existing special schools (extra places are needed), more special schools, specialist units attached to mainstream schools and automatically funding multidisciplinary teams for children in regular mainstream schools.

· Legal aid for disabled children

· Make sure there is suitable building design and quieter teaching areas to enable more young children with autism to go to mainstream

· Provide an information pack for parents about their child's legal entitlement and access to services, but also make the standard multidisciplinary provision automatic so that everyone does not have to fight for it, as the cost to all is greater in terms of inefficiency and the longer term cost of a lesser developed child/adult.

· Make SEN generally less of a backwater and give it the prominence it deserves. Not enough of the right calibre of people are attracted because of this. And poor LSA pay also needs to be addressed.

 

Social Services

 

· Due to the backlog in diagnosis there are carers and families being denied access to key services such as carers assessments, respite, support for siblings. Access should be automatic and the outcome should not be based on diagnosis and a post code lottery.

 

Leisure

 

· A compulsory action plan needs to be developed for leisure activities for all our children with funding attached. This is not a local priority despite all the hype about the London Olympics 2012.

 


[1] DfES/0117/2004

[2] Sourced from The National Numeracy Strategy Guidance to Support pupils with Autistic Spectrum Disorders Ref DFES 0511/2001 and the NAS Help! Programme 2007

[3] Identified by STAAR - Supporting Together Those with Autism and Aspergers Syndrome in Redbridge

[4] For example, in "Removing Barriers to Achievement - The Government's Strategy for SEN"[4], it suggests that children with severe and complex needs be sent to special school (paragraph 2.14 and the second page of chapter 2). This is unlawful because of the obligation not to discriminate against the admission of disabled children in section 28A Disability Discrimination Act 1995. It also states that children may be excluded for challenging or bad behaviours (paragraph 2.24 and 2.26), but the fact is that under Section 28A(4) of the Disability Discrimination Act (DDA) 1995 it is unlawful to discriminate against a disabled pupil by excluding him/her from school. Rather schools should be responding to instances of bad behaviour, not by immediately excluding which is discriminatory because a non-disabled child with good behaviour would not be excluded. That is the test of discrimination established in the DDA. They should instead be making all reasonable adjustments for our children to manage their behaviour occasioned by his disability. Schools are not doing this and are not trained or equipped to do it.

[5] DfES/0117/2004

[6] The PCT commissions NELMHT to provide mental health services locally. But it is not part of The Children's Trust

[7] as set out in the literature of the American Autism Awareness Campaign and the National Autism Association

[8] This needs to be grounded in law because once our children reach 16, there is no where for them to go because they are likely to need support and their attendance at  a College of Further Education or training course is not covered by any legal commitment, and therefore no-one is responsible.