SCN0380

Written evidence from Parental Submission 99

 

Special educational needs and disabilities inquiry

 

  1. Our son, [name] is 8 years old. At 3yrs 6months he was diagnosed with high functioning autism. At 4yrs 2 months he was diagnosed with epilepsy and at nearly 7yrs old he was diagnosed with a Language Disorder associated with Autistic Spectrum Disorder.

 

“The Committee’s new inquiry is intended to review the success of these reforms, how they have been implemented, and what impact they are having in meeting the challenges faced by children and young people with special educational needs and disabilities.”

 

  1. The EHCP process has caused nothing but stress and uncertainty as to whether my son with autism, epilepsy and a speech and language development disorder will actually get any meaningful help. The system as it stands does not meet his needs or challenges that he faces both now and in the future.

 

  1. The following is our evidence and experience under your defined terms of reference:

 

Assessment of and support for children and young people with SEND

 

  1. We applied for an EHCP assessment ourselves in December 2016. Whilst [name’s] school at the time were supportive of his SEN, they seemed reluctant to apply and were very unsure of the EHCP application process. We were initially turned down for the assessment.

 

  1. In January 2017 we appealed this decision and went to mediation. After mediation it was agreed to provide [name] with an EHCP assessment. In April 2017 we visited a private speech and language therapist for the first time. On our initial appointment she carried out an assessment of [name] and put his language and communication age at between 3-4 years old. At the time [name] was nearly 7. At the same time there had been no support or therapy from the local authority speech and language services since February 2016. In June 2017 the local authority carried out an assessment for the EHCP and reported the same language level.

 

  1. We were not seen by an Education Psychologist (EP). After speaking with the EP on the phone she explained she did not have time to assess him but had read his notes and was willing to put him forward for an EHCP. In September 2017 he was approved for an EHC Plan. In February 2018 we received our final plan which we are now in the process of appealing.

 

  1. The level and distribution of funding for SEND provision

 

 

  1. The level and distribution of provision is extremely poor and for us at the heart of all our problems. [Name] has had two speech and language sessions in over two years with the local authority service. There is no continuity of service. As soon as he received the two sessions, he was then discharged, and we were then not allowed to apply for a referral for a certain period of time, after which you then have to “join the back the queue” which is as much as 6-12 months. However, the LA service did have enough provision to offer to “carry out our private work”.

 

  1. Even though the EHCP has listed in section B that [name] has a language development disorder and suffers from “significant” communication, understanding and language skills, the provision is so poor that the LA is not willing to offer any further support in section F.

 

  1. The Lancashire Judgement ruled that speech is an educational provision and a child has equal right to learn how to talk as they do to write.

 

  1. When we started the EHCP process we read the “nice” stuff about how it was designed to offer more opportunities and put the child/family at the centre of the process. This could not be further from the truth. [Local authority] has said they will not specify detailed provision unless they are taken to court. Is this putting children and families at the centre of the process.

 

  1. If this was the case we would have to take the Local Authority to tribunal just to try and fight for our son’s right to learn to talk, communicate and understand.

 

  1. We have applied for [name] to go to the local special school, however, he has been turned down and they have suggested mainstream. However, the mainstream school don’t believe they can support him fully, the nearest SRB require that [name] has to be accessing 50% of his current curriculum to be accepted. [Name] is not accessing any of his current year curriculum. He is in year 3 and is only accessing year 1 and some year 2. Therefore, if the main stream school do not believe they can support him, the SRB don’t think he is suitable and the well over-subscribed special school don’t believe he is suitable, where is the provision my son to get a “high quality” education. And also, the SRB unit is 30-40 minutes away. Our son has epilepsy which is currently under control, but this medication is changing and epilepsy changes with age. It has already changed once in [name]. His seizures now last over 5 minutes and has to have midazolam with him at all times in case he has a seizure. We do not want to send our child 30 minutes away where if he did have a seizure he could have significant brain damage within 30 minutes. Also, he would require transport to get him there, other children locally are taken in a taxi. Can the Local Authority guarantee that the taxi driver will be trained in using midazolam? It appears that next school year our choices are only home schooling.

 

  1. We have tried looking around at other main stream schools but there is no valuable information within any Ofsted report that can tell us how well a school deals with SEND. There is no report that addresses the potential sensory issues that a child may suffer due to the physical characteristics of a building, there is no report that tells you how many of the Teaching Assistants are qualified to deal with a child with autism and speech and language disorders, there are no report or policy to tell us how staff deal with a child having a meltdown. So, to take him from one main stream school and put him into another is like jumping out of the frying pan into the fire. I have read and spoken to many parents who have done this and I for one am not prepared to. Why should we, the provision should be there.

 

  1. [Name] also suffers a lack of fine and motor skills typical with autism such as writing, running, riding bikes; everything that is a typical part of childhood. We have been offered no support from occupational health and we choose not to ask/fight for this as we have had to prioritise what we fight for and his speech and language and schooling comes first. We did apply to be referred for occupational therapy, but we were turned down as there is no local offer for this.

 

  1. So, you want to know if there is enough provision? If there is, they’re doing a good job in keeping it from us.

 

  1. In summary, no meaningful speech and language therapy available, no places available at special schools, no services for other services such Occupational Health.

 

  1. The roles of and co-operation between education, health and social care sectors

 

  1. The infant school [name] attended when we applied for the EHCP were unaware of the procedures/applications and information required. Our EHCP case worker indicated that this may have been the reason for being turned down for an EHCP Assessment.

 

  1. With regards to [name] speech and language therapy, health and said what they will provide in line with framework of service and the local authority has just accepted this. The school, whilst they say they have access to a speech and language therapist have to go through the local cluster to get funding for this which is constantly turned down.

 

  1. Our main issues lie with the fundamental lack of provision for anything which has rendered the EHCP we have completely useless, pointless and complete waste of time and money.

 

  1. We want to be parents to our child not spend time fighting the system. We have two children that live next door to us. They don’t have autism or special educational needs. They are learning to read and write, learn to count, play and build relationships. Why aren’t the government giving the additional provision my son requires to do the same?

 

June 2018