SCN0691

Written evidence from Parental Submission 168

 

 

  1. I have followed with interest the Committee’s focus on special educational needs (SEND) and Education Health and Care Plans (EHCP), in particular. I am concerned that the committee might not hear the individual voices of children with complex needs, mental health difficulties or autism because children with these disabilities might be less able to travel to London or speak in front of a committee. It’s easy for some of these children to feel isolated or invisible and for their needs to be misunderstood.

 

  1. I have an eleven year old daughter with complex SEND, including: a visual impairment, autism spectrum disorder and severe generalised anxiety disorder. I also have a six year old son with ASD. I am a qualified teacher. I have a great relationship with the Local Authority SEND department, with the school my two sons attend and with the school my daughter is currently too ill to attend.

 

  1. Educational professionals are, of course, dedicated and everyone wants what is best for a child. Sadly, we have had a long struggle to understand my daughter, [name’s], needs and to try to obtain the support she needs to be well, to access education and to enjoy her childhood. I struggled to get [name] an EHCP, which was awarded two years ago. It quickly became apparent that whilst fantastic for her physical visual impairment needs the EHCP was wholly inappropriate for her ASD and mental health needs and for her life, future and aspirations in general. I mention our case because I don’t think it is unique. SEND professionals describe the SEND journey as ‘a marathon not a sprint’ and I wonder how we can improve that experience for our children. I am not asking for any personal intervention. I simply wondered if our experience might add to the body of SEND information the committee is currently gathering.

 

  1. I am concerned that a generation of children with complex neurodevelopment and mental health conditions are being traumatised by their experience of mainstream school and are slipping out of education. My own daughter was diagnosed with ASD late. Instead, school diagnosed ‘school anxiety’ and felt that she needed to experience ‘flooding’, where we had to force her into school day after day. This caused a mental health crisis and [name] has spent a year out of education, signed off by her psychiatrist (who we had pay for) and effectively without support. There are some points that I would like to share from our experience of our SEND journey, as I think that perhaps they could help inform the committee and help other children.

 

4.1.                      Early intervention seems to be key in avoiding chronic mental health and behavioural difficulties. However, identifying SEND often relies on teachers recognising not just educational needs but also complex or subtle neurodevelopmental conditions such as autism, ADHD and anxiety. Teachers are overworked with large class sizes and simply do not have the training or resources to recognise medical conditions or SEND in every child. I believe all children should see a paediatrician during regular milestones in their educational journey.

 

4.2.                      There are a great deal of ‘urban  myths’ surrounding the EHC process. School’s can be afraid to support an EHC application on the basis that they will be required by law to fund the first £6000 of any provision listed in the plan. Schools worry that they will no longer be ‘in control’ of their budgets and will have greater local authority involvement. EHC support or even access to an educational psychologist is rationed to the children teachers feel are most in need. Schools can also believe that unless £6000 of support is obviously required, an EHCP is not necessary or that an EHCP is for children who require one to one support only etc.

 

4.3.                      EHCPs are written with the short term in mind. In our experience the plan was good at listing provision for physical disabilities but not good for neurodevelopmental or mental health conditions.

 

4.4.                      There can be a disjointed link between the education, health and care needs on an EHCP with the focus being on short term education goals.

 

4.5.                      Waiting lists for neurodevelopmental or mental health diagnoses are far too long. There is approximately a twenty two month wait here in [local authority] for ASD assessment. [Name] has been on various mental health waiting lists. She has been on a CAMHS list since July 2018 and she is currently at place 27 out of 37 children on the complex caseload, this is for a child out of education for a year, who is not functional in day to day activities.

 

4.6.                      There can be a general reluctance to amend an EHCP if needs worsen or new conditions are diagnosed.

 

4.7.                      An increase in SEND funding would, of course, be welcome but also an understanding that focussed support at an early stage prevents devastating health and educational outcomes and an ongoing cost to society in the future.

 

  1. My daughter has suffered during her education journey and has been incredibly brave. As a parent, I can’t describe the pain involved in watching my daughter’s mental health deteriorate to the point where she is no longer functional in day to day activities, or the frustration in trying to secure appropriate support in a system which constantly tells you there is no money and has waiting lists in years not weeks. My daughters EHCP addressed her visual needs but left her other needs completely unsupported.

 

  1. I respect all the teachers in her schools and the Local Authority. I appreciate how hard they all work in their vocation. I was a teacher and a [redacted]. Even I, with my skills, feel that the SEND journey has been too difficult to navigate. I feel as if I have failed my daughter. I have tried my best to seek appropriate support for [name] and yet my wonderful, clever but vulnerable daughter has currently slipped out of education and has developed a severe anxiety disorder.

 

  1. I understand that complex special needs raises particular challenges and that each individual journey is unique and can’t be compared. However, I hope that our experience might somehow help inform policy to improve understanding and provision for the most vulnerable members of our society. In my view, early intervention is essential but can be extremely difficult to access, particularly for developmental or mental health disabilities.

 

  1. Thank you so much for your time. I do appreciate that you are all extremely busy people and I am grateful that you have listened to my views.
     

 

 

March 2019