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Written evidence from SEND Family Voices

Summary

1. This report is submitted by SEND Family Voices, a Parent Carer Forum  (PCF) based in 2 London Boroughs. We are run by a steering group of 20 parent carers. Many of our Steering Group members also represent local disability charities. We have around 730 parents who we directly reach through email newsletters, and we are in touch with  approx. 500 more through the linked disability charities.

The Key Issues Raised with us by local Parents and Carers

2. The assessment of and support for children and young people with SEND

2.1.                      Poor administration of the EHCP process, leading to very long delays, poor quality plans and inappropriate provision for children. Breaches of statutory duty.

2.2.                      Evidence of Local Authority refusing to conduct needs assessments or setting unlawful hurdles (such as requiring EP reports)

2.3.                      Evidence of watering down of provision or overriding advice from key professionals (or commissioning additional “statutory” reports) to override recommendations from professionals in many cases, leading to poor quality plans and inadequate provision

2.4.                      Compelling evidence that schools are struggling to provide support to SEN pupils because of lack of resources (and sometimes training) – leading to a greater number of children being excluded, placements breaking down or failing to find an appropriate school.

3. The transition from statements of special educational needs and learning disability assessments to education, health and care plans

3.1.                      The LA committed to transferring 900 Statements to EHCPs in 5 months (between November 2017 and end of March 2018) to meet the DfE deadline. In the previous 38 months, since the start of new system approx. 800 statements had been transferred. We are concerned that the pressure on numbers has had a severe impact on quality. Particular concerns are:

3.2.                      lack of specificity even when this was clear in the statement

3.3.                      very poor quality reports, when the LA should be carrying out a reassessment (multiple cases of professional reports being submitted without the professional having met the child.)

3.4.                      provision that was clearly defined in the statement being removed,

3.5.                      any provision (except SaLT) that is provided by health being either missed, or put in section G

3.6.                      The process has been opaque, rushed and not at all child-centric

3.7.                      Many EHC plans , that were not properly complete have been finalised to meet the deadline, with vague promises to issue a “final amended plan” later.

4. The level and distribution of funding for SEND provision

4.1.                      Our local authority areas are significantly overspent in their SEN budget, and have had to accept a loan from the DfE to carry them through this year. We expect significant cost savings to be made this year but have yet to hear any detail on what this will look like. However, schools, therapies and LA are already finding meeting demand difficult, as evidenced by this report.

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

5.1.                      There is an almost total absence of social care plans included in EHCPs – even for children with significant social care needs

5.2.                      In one borough cooperation with health is very difficult. Health is also a very large entity who don’t seem to have EHCPs high on their agenda. Most Plans that have useful health input are based on the parent coordinating this.

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

6.1.                      Provision post 16 is incredibly disjointed. The small transition team that used to support only parents known to Children’s Social Services, was disbanded in 2016 with a promise that it would be rolled out more widely into the SEN/PfA team, but this hasn't happened and consequently this service doesn’t exist any more. 

6.2.                      The transition between children’s and adult social care and paediatric and adult medicine is alarming as they are so different without any clear pathways for transitioning from the children to adult services.  

6.3.                      Parents have to find their own options post 16 and post 19 and fight hard for them. There is very little in the way of proper pathways to employment, a handful of supported internships and apprenticeships), with any focus primarily on NEETs and the more able, with only limited, if any, support and opportunities for those with Higher or Complex needs.

6.4.                      Post 16 (and Post 19) education is usually only part time, meaning that vulnerable young people who are not able to be independent when not in a lesson, need supervision or support at these times. This is leading to parents having to stop work to look after them. Or push for far away residential placements, which are often very expensive.

6.5.                      No clear local supported living options available.  

Recommendations

7. We believe that to secure positive outcomes for our children an honest debate about the funding for SEN needs to happen. At the moment the LA and schools have duties, but apparently too little funding, or too little ring-fenced funding to fulfill these obligations in a way that properly supports our children and young people. In particular the extension of the EHCP to 25, without additional funding makes no sense, given the acute lack of resources and funding in adult services. This leads to young people “falling off the cliff” .
8. We would also suggest that the sections in the EHCP are overly long and complex, and we suspect that many plans will never be properly read and will be very difficult to keep up to date. We would recommend the adoption of a national EHCP template, based on good practice and what has been proven to work
9. We recommend better oversight of Local Authority and school implementation of SEN policy. Tribunal is a prohibitively expensive and complex remedy for parents who feel that their child is not getting what they need. Further, children who need SEN support but do not have the protection of a statutory plan have nowhere to go for help other than the school. Schools sometimes lack the training or funds to properly assess or support children, leading to a situation where families feel that they have nowhere to turn.

A Note on the Evidence

10. This section contains the evidence that we have relied upon for this report. It is based on case studies submitted to the Parent Carer Forum by parents for a meeting with local MPs. It also contains some data extracted from the SEND Family Voices issues tracking log, which is compiled from contacts that the PCF has with parents, carers and sometimes SENCOs and other professionals. The data is a by-product of supporting parents but the PCF logs each individual case so that they maintain an overview of what the community is contacting them about as feedback to decision makers and service providers.
11. Each issue / question / comment / request is logged only once (even though there may be multiple contacts through email or phone with the family.
12. All names in the case studies have been changed.

Summary of Issue Log Data:

13. The issues are categorized into topics and logged as either an issue (when there is a problem), or a comment, question or request.

EVIDENCE

14.                                                                                                                                            The assessment of and support for children and young people with SEND

14.1.                 Poor administration of the EHCP process

A KNOCK DOWN, DRAG OUT FIGHT

14.1.1.                      We wish that politicians would understand that the fight that parents have to go through to get their children’s needs understood and provided for is far, far worse than the realities of raising our disabled children 

14.1.2.                      A KNOCK DOWN, DRAG OUT FIGHT - The costs in terms of time spent trying to get responses, disdain and unpleasantness experienced from those who are specifically tasked to support our children’s needs and us, ignorance, dishonesty, unkindness, lack of empathy, being fobbed off, and all the emotions raised in the process, just to get our children’s needs understood and adequately provided for - is far, far worse than the realities of raising our disabled children.

14.2.                 Evidence of Local Authority refusing to conduct needs assessments or setting unlawful hurdles (such as requiring EP reports)

14.2.1.                      The LA sacrificed any chance of early intervention to save money 

14.2.2.                      … they instigate procedures that are illegal, without fear of come back from Ofsted, the LGO or the Government. And it’s me, Sam’s only parent & carer, who bears the personal, professional and financial brunt of it all. But it is Sam who potentially loses all chance of a socially and economically productive life.

14.2.3.                      Sam was 2.5 when I realised his speech wasn’t developing like other kids his age. By the age of 3 he’d had Speech and Language assessments and begun group therapy. It wasn’t until he was 4 that he was referred to Occupational Therapy and within 6 months ‘Autism’ was first mentioned.

14.2.4.                      But due to limited capacity it would take a year for a full diagnostic assessment. An EHCP was suggested, but both LA and school said no, through false pretences and ignorance respectively as I later discovered. Sam by this time was 5 and a half.

14.2.5.                      Then his therapies were stopped because he didn’t have an EHCP. His behaviour deteriorated dramatically. He regressed alarmingly. The school applied for an EHCP. It was refused. After many requests for clarification the LA said their refusal was on procedural grounds. The wrong forms had been used. Not a single mention of my boy’s needs.

14.3.                   Evidence of watering down of provision or overriding advice from key professionals

14.3.1.          Documentation is extremely poor and sections are incomplete or missing…

14.3.1.1.              We had no OT or SLT commissioned for Oliver despite the school, ourselves, and EP saying it was necessary

14.3.1.2.              The documents used vague and unspecific language "Oliver will receive advice and support from language professionals as deemed appropriate"

14.3.1.3.              They used responsibility passing phrases "Oliver will have use of strategies and support from Occupational Therapy for sensory and motor issues if deemed appropriate by the service" 

14.3.1.4.              And finally they did not reflect the original submission or statements from a subsequent review meeting and minutes

14.3.2.          An inadequate report will be crucial in determining the support my child receives

14.3.2.1.              A week or so ago I was out shopping and got a call out of the blue from an Educational Psychologist from The LA. The EP said that she needed to submit a report by tomorrow so it was important that we talk. During the call I did discuss my concerns and then at the end we summarised together what she'd put in the report. I was still not happy and asked that we speak the next day. I have just received a copy of the report – and it makes no mention of the key issues that I was at pains to communicate to the EP. The EP has never met my child. 

14.4.     Compelling evidence that schools are struggling to provide support to SEN pupils because of lack of resources

14.4.1.          They are failing to provide education for our children, either in a school or home schooling

14.4.1.1.              We moved to the Borough on 1st July 2017. At the beginning of September we had a meeting with the caseworker of our twin boys, 9 years old both diagnosed with ASD. We had 4 preferred schools. On a second meeting in October we found none of the 4 schools would offer our boys a space. The caseworker named 6 other schools she would forward our boys papers to. At this point (end November) we still don’t have a school for our children

EVIDENCE

15.                                                                                                                                            The transition from statements of special educational needs and learning disability assessments to education, health and care plans

15.1.     It is so emotionally draining knowing I am going to have to go into battle with the LA in order to secure a place that meets the needs that I know she has but that the LA refuse to identify on her EHCP

15.1.1.          …. Firstly, timing issues. It has taken in excess of 2 years to transfer from statement to plan. I initially requested that the plan be transferred in April 2015. During this time I have dealt with 8 different co-ordinators. I have had at least 6 drafts issued. On reflection, knowing what I do now I should have appealed a long time ago but naively held faith that we could get a workable plan.

15.1.2.          Section B in my daughters plan is crucial as in order to inform provision in F it is vital that needs are clearly identified. Obviously this is not in the LA’s interests so it has been a battle

15.1.3.          Preparing for Adulthood has been a joke.

15.1.4.          Sections C, D, G and H state ‘none identified’ Why not? Reports should have been requested surely. My daughter has a social worker and a psychotherapist working with her.

15.1.5.          A couple of weeks ago I was told by my current caseworker that his supervisors had stated that there would be no further placements at this school from the borough due to costs – how can this possibly be the case when the needs assessment has yet to be done???

15.1.6.          I now believe that my daughter’s primary need is SLT. The borough currently gives her 6, yes 6 sessions a year. This is totally budget not needs driven.

15.1.7.          It is so emotionally draining knowing I am going to have to go into battle with the LA in order to secure a place that meets the needs that I know she has but that the LA refuse to identify on her EHCP.

EVIDENCE

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

16.1.     Almost total absence of social care plans included in EHCPs – even for children with significant social care needs.

16.1.1.          Care part still blank despite the fact my son goes to a specialist residential school and will need care all his life

16.1.2.          I’ve been through about 10 people. The care part still blank despite the fact my son goes to a specialist residential school and will need care all his life.

16.1.3.          Social care team has used their part of the EHCP form to link to the local offer. No words and no interest (even though they pay 1/3rd of the fees)

16.1.4.          I have advised already I will never sign it off with such a woeful contribution to a document that will need to be valid for 12 years.

EVIDENCE

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

17.1.     Even with an EHCP at 16+ it is very difficult

17.1.1.          This is a young person who has an illness and consequently missed a lot of schooling – and also has severe anxiety. The EHCP has made no difference to the support she’s been given at college. Last year she attended x college but was asked to leave for poor attendance. I attended various meetings and requested extra help – but none was forthcoming. There were no funds available via the college and LA said nothing available as she was already at college. A no-win.

17.1.2.          No 6th form would give her a place as she didn’t have the requisite 5 GCSEs even though “reasonable adjustments “ should be made – she has 4 including Maths and English.

June 2018