SCN0575

Written evidence from Parental Submission 114

1. I am writing as a parent of a child with a severe physical disability who is currently in year 4 at a mainstream primary school with a resource for physical disability / complex needs.  My daughter has [condition], a rare genetic condition; this is particularly unusual in children and my daughter’s symptoms are much more severe than the symptoms usually seen in children.  She is a full time wheelchair user, unable to stand independently, can weight bear for brief periods but needs regular physiotherapy to stop her symptoms worsening.  This is a type of motor neurone condition and is progressive although not usually life limiting.  My daughter does not have a learning disability but is struggling to keep up academically at school because of the severity of her physical needs and because her condition affects her speed of information processing: she speaks and moves slowly and it takes longer for her to process information so she needs information repeated or broken down in order to take it in.  We do not know at present what her academic potential is.  She is a happy, social child with lots of friends but struggles with confidence because she has been so disabled by her environment and the lack of specialist support she has had.

Assessment of and support for children and young people with SEND is too fragmented with not enough co-ordination between health and education for those with complex needs

2. We have struggled with the assessment system because it is so fragmented.  Health professionals and education professionals give their views separately and someone tries to put together a plan which can resemble a huge list of tasks to complete – a physiotherapy plan, an OT plan, a speech plan – all to be incorporated into the school day as well as the curriculum for a child who tires easily. What we need is health AND education professionals to work together to suggest realistic and measurable outcomes.  What we get is vague outcomes such as “to participate in education”, “to achieve academically as well as she can”, “to maximise function as far as is possible” and so on.  While it is difficult to suggest long term outcomes for a child with a progressive condition, we need professionals to understand better how our daughter’s health and education needs affect each other.  We have yet to find an educational psychologist who has any understanding of the impact of a significant physical disability on a child’s learning.  For example, a child who has to be helped to move around, to get the materials they need to work, who cannot write more than 2-3 words in a minute, etc, cannot become an independent learner without a lot of help.  But then they come to rely on this help unless it is very skilled.  We lack any specialist advice on how to address this and what support is needed.  We did not get a powered wheelchair until my daughter was 7 years old – she was unable to move around independently prior to this. Lack of specialist occupational therapy advice meant that my daughter has only just been assessed in year 4 for specialist IT equipment to help her record her work independently.  In general, because our daughter’s needs are so unusual and complex, the professionals commissioned locally do not always have the experience they need to fully assess her needs.  Thus her EHCP does not reflect her needs.  The local authority does not have the expertise to understand this, and health professionals say they are unable to involve themselves in educational issues.  We are just stuck in the middle and will probably have to go to the tribunal to sort things out.

The level and distribution of funding for SEND provision is inadequate and is being wasted by Local Authorities because it is not ring fenced and they have not planned well enough

3. Local authorities are facing unprecedented cuts to funding.  However, we seem to have been forgotten in our local authority, where children’s services are in special measures.  There seems to be no money for the improvements needed which are right across the service.  The LA has failed to meet children’s needs for many years and the infrastructure is not in place to sustain improvements.  Yet the council has just decided to cut the funding for children’s services by 25%.  In general, there is an increasing number of children with SEND in our area and in most areas, but funding has not increased proportionately.  There need to be sustained increases in funding which is ringfenced for SEND.  The free school system is not always helpful to SEND children as Local Authorities have less influence on these schools if they choose not to collaborate to help SEND children in their area.  Eg reducing exclusions, accessibility planning.  Schools which are not LA funded must make their own provision for accessibility and many are unwilling to do this when there is a heavy cost.  It seems to be down to parents to make this case under the Equality Act and that does not make it easy.  I do not think any of our local secondary schools will be able to meet my daughter’s needs because buildings are not accessible, and I do not have the energy for a legal fight to achieve this.

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

4. This is where our problems are most intense.  When money is short, no one wants to pay for expensive equipment and physically disabled children are expensive.  They need adaptations to buildings, equipment such as specialist seating and hoists which cost thousands of pounds, ongoing therapy, wheelchairs, accessible classrooms and accessible vehicles and destinations on school trips, and many other costly things.  My daughter has had to wait

4.1.                      9 months for a height adjustable changing table

4.2.                      4 months for a specialist class chair

4.3.                      Over 3 years for specialist IT equipment (see above)

5. These were due to arguments between health and education over whose responsibility it was to pay for items, or whether the equipment recommended by the health professional was really needed.  I know I can use the legal framework to challenge these delays but I have to do this CONSTANTLY.  I had to give up my career as a university lecturer because I needed to be on the phone and writing letters and going to meetings every week to try to sort out this kind of delay.  Health commissioning is complex and our local CCG uses this fact to try to wriggle out of their responsibilities, whereas education just say they have no money and try to avoid paying for anything.  I keep being told that the Equality Act means that all schools have to be accessible but the amount of money needed for all the equipment my daughter needs is huge and we are pushed from pillar to post trying to ensure things are provided in a timely fashion.  In the end we have now moved my daughter from an ordinary mainstream school to a resourced school in a neighbouring local authority where more equipment is available.  But this LA is trying to streamline the resource as they think physically disabled children can all be provided for in mainstream these days.  This isn’t true. 

6. The fact is that the SEND reforms in 2014 promised so much but there isn’t enough money or energy to change things locally.  It would be fabulous if health and social care and education were more joined up but this is INCREDIBLY difficult to achieve.  Someone needs to stand over them with a big stick and make them do it, and the legislation on its own has not been enough.  NHS England is taking no responsibility, and the LGO is pretty toothless as LAs are constantly allowed to get away with things.  Our experience hasn’t changed and if anything things have got worse as there is less money around so everything is harder.

7. I’m not even going to bother to comment on social care because it is one disaster from start to finish.  No needs assessments, no linkage into the EHCP, inappropriate provision, I despair.

June 2018