SCN0073

Written evidence from Parental Submission 179

 

Context

 

  1. Our daughter was born in 1999 and diagnosed the same year with [syndrome name], [redacted]. This is a very condition with probably only around [number] children in the UK having a similar condition.

 

  1. Physically she is now doing fairly well and can walk but has poor spatial awareness, and a problem with balance. Over the years she has had multiple surgeries on her back for [redacted]; debulking of excessive tissue on one of her feet, squint correction and dental work (which can only be carried out under general anaestheic).

 

  1. Our daughter has very little speech but does understand some sign language (Makaton) and some symbols. She is ono the Autistic spectrum and has great difficulty forming relationships with her peer group. She does, however, like computers and computer tablets and is able to use such devices quite easily.

 

  1. At home she is able to carry out some housework tasks and shows signs of being able to maintain concentration in school to carry out tasks there. She has just begun to use an App on her tablet to translate her needs into spoken language and this in time will be very useful for her but perseverance and additional tuition by specialist is needed.

 

  1. The comments below relate to our experiences in [local authority] and unless otherwise indicated the Local Authority (LA) referred to is [local authority].

 

Assessment of and support for children and young people with SEND

 

  1. Assessments are carried out by social workers who vary in terms of experience, commitment and level of support. Their time availability is naturally limited by their case load but latterly we have had sufficient access to our social worker. This has not always been the case and in previous years we have had very little contact with social workers; mainly limited to yearly visits.

 

  1. Core Assessments appear to be the tool whereby the LA can understand the needs of the young person and indeed their carers although the tendency is for these core assessments to become “tick-box” exercises; the previous year’s assessment being used as a template. Parents and carers naturally focus on the needs of the individual; the LA it would appear have a pre-determined approach which takes into account their budgetary position first, the numbers in the cohort, other pressures on the department and then the needs of the individual. Of course, parents/carers have very limited (if any) knowledge of the LA’s financial position although armed with this detail would probably not affect our positioning but some transparency may make matters easier for dispute resolution.

 

  1. In all cases matters which require or impact on funding in any way are referred to “Panel” for decision. The workings of the Panel are not transparent in any way and parents are not allowed to attend and make representations. The decisions produced by “Panel” are not easily challengeable although with a lot of perseverance it may be possible in some circumstances for them to re-visit previous decisions.

 

  1. In rural counties like [local authority], support for young persons with disabilities is largely centred on the main population hubs like the County Town ([town]) and other relatively large towns. Some farms in outlying districts do offer the opportunity for young people to “get their hands dirty” and help with some jobs on the farm or just enjoy the surroundings which are usually coordinated by school or charitable organisations.

 

  1. When the young person reaches the age of 18 everything changes and everything that was in place previously has to be re-applied for (if suitable) and matched funding also has to be agreed with the LA. Overnight, any stability that did exist is turned upside down.

 

 

The transition from statements of special educational needs and Learning Disability Assessments to Education, Health and Care Plans

 

  1. In our particular case this was dealt with reasonably efficiently although the timeframe in which this happened was far too elongated and rather cumbersome. The school our daughter attended initiated the transition and several iterations of the new EHCP went back and forth between us the school and the LA before the final version was agreed. Maybe because our daughter was diagnosed very early on in infancy and the Statement of Special Educational Needs was in place for many years before the transition to EHCPs this helped the process as there was very little dispute surrounding her needs in school.

 

  1. The LA’s stance on maintaining the EHCP now that our daughter achieved adulthood and finishes school this July (2018) has changed completely and following a review in February 2018 we have been given notice by the LA that they are ceasing to maintain her EHCP effective from the end of August 2018.

 

 

The level and distribution of funding for SEND provision

 

  1. As alluded to above, as parents we have very little knowledge of the levels of funding, it’s distribution and what priorities face the LA.

 

  1. Some information including the amount per pupil for place and top-up funding is included on the LA’s website (The Local Offer) and EHCP funding therein is reported to be in increments of £1000 based again on a panel decision which determines need and outcome.

 

  1. Other than that we have no information on total funding, any ring-fenced monies or how the funding is distributed.

 

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

 

  1. There seems to us to be very little difference in the way the EHCP is put together and operates as opposed to the old Statement of Special Educational Needs. Throughout her school life our daughter has been seen on a bi-annual or annual basis by a Paediatric Consultant who has facilitated some action to some health issues although this only really reinforces that which her own GP can and often does deal with simultaneously.

 

  1. Only very recently (in the last month – May 2018) have we had input from any other health professional to assess any ongoing health care funding which our daughter may need. We were unsurprised to learn that their decision was to not provide any ongoing funding.

 

 

Provision for 19-25-year olds including support for independent living; transition to adult services; and access to education, apprenticeships and work

 

  1. Our daughter, like every other student that attends [special school] in [town] is able to continue her education there until age 19; leaving in July 2018.

 

  1. Despite our wishes which we have clearly expressed on numerous occasions as provided for under Sect 19 of the Childrens & Families Act 2014,  the LA have completely disregarded our desire for our daughter to attend a specialist college (out of county) which best meets her needs. Instead they have advised us that the EHCP will cease in August 2018.

 

  1. Their offer to us in doing so is to provide supported living with day care placements, many in places we have never heard of nor seen. They have not indicated how this will be in our daughter’s best interests or what outcomes they expect from this provision.

 

  1. Our daughter has severe learning difficulties from a rare genetic disorder and has autism. The college we had planned for her to go to is Autism Accredited and has a long history of providing exceptional results for disabled students with autism and other disabilities.

 

  1. Whilst we note the LA’s position we feel the ”package” which they have loosely proposed is too late (we have researched colleges and their potential for the last 3 years); will not meet her needs (there are no learning outcomes mentioned at all) and will not under any circumstances be in her best interests.

 

  1. This inevitably has forced us down the path of a SENDIST appeal which we are pursuing through our legal representatives. Mediation was offered to us which we were advised to decline so as not to protract proceedings any further.

 

 

 

May 2018