SCN0348

Written evidence from Parental Submission 136

 

 

Introduction

 

  1. I write as a parent of a frighteningly perceptive and intelligent child on the Autism Spectrum.  To get a better instinctive picture, I would suggest using the label 'Aspergers' even though this has been subsumed by High-functioning Autistic Spectrum. There are episodes in our battle to get an education for them that may have a universal aspect and are therefore relevant even thought this is based on an individual.  I wish to remind those that may be able to make a difference that ignoring bright but non-standard children risks losing loyal, honest, diligent contributors to the economy and ending up with more people who are reliant on handouts.

 

  1. Some of this submission has been incorporated into a joint submission by a paernt's group in my local authority.

 

  1. Sections

 

3.1.                      Joined up social care

 

3.2.                      Effect of ingrained prejudices in those who are implementing the system

 

3.3.                      Effect of seemingly endless reforms

 

3.4.                      Atmosphere of cuts

 

3.5.                      The lack of accountability

 

3.6.                      Practicalities

 

 

Joining up educational needs with health and mental health care.

 

  1. A report came out about the lack of overview for those at the end of life with dementia, diabetes and heart problems.  It s at least as disjointed for children with ‘complex needs’.  As you can imagine, an intelligent child is aware of doors closing and has become anxious and depressed.  This understandable reaction to prejudice, bullying and lack of support is labelled complex needs and the problems must to be addressed separately.  As a parent, I have to work out what it is that I am asking for and find the right place to get it.  Otherwise, I waste a lot of time in getting nowhere.   My problem is that I am not an expert.

 

  1. Recently, my child had their first migraine.  We went to A&E because pain was severe and it was thought to  have been caused by an incident of self-harm.  On hearing of the self-harm, one of the A&E doctors assumed that reported photo-sensitivity was psychosomatic and it was 5 hours of shut eyes (some relief came from sunglasses being brought in) in the very bright lights of A*E before another medic took the symptoms seriously, got some pain relief and spoke about migraine.  A report was sent to CAMHS about the self-harm that did not mention the migraine and one to the GP about the migraine that did not mention the self-harm.  A formal diagnosis of migraine has since been given.  I filled in a comment form to PALS about the doctor who assumed it was all psychosomatic and have heard nothing.

 

  1. Our GP when I was asking about how to navigate the maze of mental health, general health, development  and educational support, asked in all innocence what an EHCP was.  The H is presumably there for a reason.

 

  1. When, because of being on a waiting list for the correct mental health support, our child could not be kept from self-harm at home, they had a short, voluntary stay in a residential psychiatric ward.  This was not respite for us as we had to travel each night to visit, but it was at least a place of safety and better than constant visits to A&E. at weekends.  This clinic did not administer the asthma medication because it had to be asked for (by someone on the spectrum who finds initiation of conversation difficult).  Again, when I wrote to point this out as a failing, I had no response.

 

  1. We note that although an EHCP is until 24 inclusive, adult mental health services start at 18.  We are apprehensive.

 

 

The inertia and prejudice among those expected to implement the systems.

 

  1. Prejudices against people with mental health problems are rife.  The migraine incident shows that at least on medic jumped to a false conclusion.  Similarly, there are many prejudices against and false assumptions about those with disabilities .

 

  1. My child was at a selective school, having reportedly passed the entrance exam with full marks.  Since SEN and ESN are too easily conflated in the minds of the unthinking, a selective school assumes it has no need to consider Special Educational Needs.  The provision was for dyslexia and that was all that was available. 

 

  1. The governor with responsibility for SEN spent most of an interview telling me how she knew all about children with Aspergers because her child had that diagnosis.  The attitude seemed to be that the school was therefore capable of dealing with an Aspergers child and any inability to cope was therefore my child's fault.

 

  1. However much the Children  and Families Act  has been progressive beyond the condescension to the 'unfortunates who will never amount to much', too many of the staff administering or avoiding the legislation have this prejudice.

 

  1. Verbatim from an email from the head of keystage:

 

13.1.                 [We} are a mainstream school and so do not receive additional funding for any student with complex needs unless they are in receipt of an EHCP.

 

  1. The implication in the context being that they therefore had no obligation to 'solve' the problem my child posed.  There appeared to be no knowledge of obligations.

 

  1. It seems that this school needed a difficult case to jog them out of complacency.  The toll on the child being the subject of a battle is great.  How many other children suffer before the pioneer gets through?  How many schools are resistant because of prejudice?  I am not sure that they have actually learned anything.  This would be the only reason to to take them to tribunal but the cost to us in effort we felt to be too much.

 

  1. Ignorance of the legislation is not confined to schools.  When I wrote (in January 2017) to the minister responsible, Mr Timpson, giving the protracted EHCP process timetable (59 weeks since application 5 months since letter promising EHCP) and asking why the system was broken, the response from his office said:

 

16.1.                 I note your child is now in education and so I assume that an EHCP has been successfully produced.

 

  1. A child in education is not necessarily receiving the right support.

 

  1. This EHCP is well out of date and we need to cover the transition to 18 but no update is offered.  We expect another battle as there should have been an update for transition at 16 but none happened.

 

 

The effects of Cuts and Austerity

 

  1. While the school was refusing to consider any additional resource until an EHCP gave them some, the Local authority was equally unwilling to hand over their money.  The first attempt to get an EHCP was driven by us as parents but the submission that was taken note of was that made by the school   It failed.  We then opted for arbitration and succeeded.  The whole process took well over a year. 

 

  1. Maybe one of the problems was that, living in [city], we had chosen a relatively local school that was outside the Local Authority area.  Many of the sources of advice available were only in-borough.  The borough where the school was had one ASD specialist for secondary school age who retired and was not replaced. 

 

  1. We notice that the committed specialists are mostly those with children who would need special considerations themselves.  This is an ephemeral area to work and is not valued enough.  Otherwise, a job in SEND is easy to see as a paper-pushing role with processing of cases the target not the amelioration of lives.  There is a huge difference in the real world.

 

  1. Parents agree that to get an EHCP is always a fight not a guided process.  You are battling against the Local Authority and have to find allies to explain the process and understand the tricks such as non-issuing of relevant letters or stopping at draft plan issues.

 

  1. Once we had our EHCP, the school, with no expertise to draw on, did not know how to implement it.  It was not written in clear language as the legislation led us to believe it should be written.  We wondered whether the effort in getting it would have been better spent taking the school to the SEND tribunal.  Realistically with a child to keep away from serious self-harm caused by the lack of understanding and accommodation, there is not time to do both.

 

  1. At the next stage of education, we found that the EHCP was a collection of reasons to exclude.  It listed needs and the establishment seemed very happy to say why they could not supply the support for them.  Our child was rejected by one sixth form college and the FE college where they now study delayed 6 weeks while a protracted, unedifying and incredibly inefficient negotiation was made between the Local Authority and the college.  Eventually, the Local Authority directed the college, which could have happened at the start.  This delay has taken all year to catch up.  Essentially, the existence of an EHCP puts the child on the barrel end of a risk assessment.  Since there is no universally accepted level of tolerable risk (the equivalent of ALARP) the institution can use a very low risk benchmark and refuse the child. 

 

  1. I have since spoken to a director of learning support at a college of Higher and further education (not considering submitting), who has admitted that they discover students' needs as they try to manage without disclosing an EHCP.  The parents then report that presenting an EHCP feels too risky in case it gives a reason to refuse.

 

 

The effect of this being one of many reforms in the education system

 

  1. The start of the new legislation has been accompanied by many reforms.  I do not believe that the bright atypical child has been in the minds of any of the ministers considering reform and accompanying upheaval.  Even a small, apparently unconnected change such as requiring English for university has shut doors for our child.  Perhaps it is the anxiety caused by the change but they have a distinction in the live speaking aspect and a U for the overall exam.  No teacher can understand why someone who is able to interpret and deliver Shakespeare from private study is unable to pass English 1-9 GCSE.  The country has lost an engineer or perhaps a neuroscientist.  As a parent, you might assume my opinion is ridiculously biased but it is a common perception of those who engage with my child in any topic to a reasonable depth that there is a communicative, enquiring intelligence there.  You might also assume that the lack of teaching was the sole cause but retakes are proving difficult with the current teacher giving up on teaching the analysis paper.

 

  1. When exam stress is the major barrier to managing an exam, a tactic is to say: try your best and we will manage without if necessary.  That placebo has been taken away and our child cannot even concentrate to finish the words in the one sentence of a question because of the stress-induced brainfreeze.

 

 

The lack of accountability

 

  1. When we looked at using the SEND tribunal, we could not see how the judgements could be imposed.

 

  1. When we see how there is a lack of expertise in some areas to advise schools, we wondered why any Local Authority would employ them when the benefit is to a child, whose outcome is probably not measured in their targets.  What is the incentive for a Local Authority to employ SEND specialists (other than those versed in the production process or rejection process for ECHPs) now that most schools are freed from the ties of the LA?  Why not just let them find their own advice?

 

  1. The school used informal exclusions and the excuse still that they could not keep our child safe.  Eventually my child had to take GCSEs not having been in school between February and the exams.  However wrong this is, it is not reflected in the school's performance except that the exam results were not as good as they should have been by a tiny margin.  The SEND performance should figure more prominently in OFSTED assessments.

 

  1. This should be seen in the context of the schools who drop children from exams, teach the marginal and let the others manage.  Getting good league table results is not the same as getting good results for the individual children.

 

 

The practicalities of being a parent

 

  1. I have been offered counselling to keep going but have rejected it as I do not want a method of coping; I want the system to work as promised in the legislation.   As one parent put it: you are your child's only advocate.  Other family members suffer.

 

  1. In general, A&E is not a place where it is reasonable to take a child with Apsergers.  Anyone with mental health problems has to wait most of the day and the place is fill of strangers with nowhere to wait out of the way.  There is nowhere else, which means that there is no effective emergency support for parents out of hours even when the child is self-harming until the self-harm is life-threatening. 

 

 

Summary

 

  1. The system set up by the legislation has been turned into a sordid financial negotiation.  I don't expect to see anyone to support me or my child unless I make a nuisance of myself. 

 

  1. The system can fail because of general ignorance and prejudice;.  It does not require evil to reduce a child to being worth less than 'normal' ones, it merely takes laziness and a preference for ticking boxes rather than valuing a life.

 

  1. Looking specifically at the questions set by the remit::

 

  1. The way negotiations are carried out would imply that the funding is not over-generous.

 

  1. The roles of and co-operation between education, health and social care sectors are unclear to parents and co-operation feels non-existent.

 

  1. I feel that the provision is still based on a basically therapeutic provision of education and not in keeping an able student in meaningful education.  Even the demand for retakes of English has been detrimental. 

 

 

June 2018