SCN0586

Written evidence from Signal family support

 

 

  1. This is a submission of behalf of Signal Family Support. We are a parent support group for autistic children and their families in the borough of Lewisham, South East London. We are a charity established in 1993 by parents, and run by parents for parents. We support over 300 families with autistic members.

 

  1. We welcome the Committee’s enquiry into SEND provision.

 

  1. To provide evidence for this submission we sought testimony from our members. While we are a Lewisham based support group, we cannot confirm whether all the experiences described here arose because of engagement with London Borough of Lewisham services, if not otherwise specified.

 

  1. We consider that the voice of the parents and carers given here, provide an accurate reflection of current SEND provision.

 

 

Assessment and support of young people with SEND

 

  1. [Parent 1] “We named two schools for my child's secondary transfer on the deadline and were assured that they would be consulted. We were assured a further two times that they had indeed been consulted. Two weeks before the deadline to name a school for secondary I rang up our preferred school and they had heard nothing of my son. Our caseworker had not bothered to consult and had lied about it repeatedly. The lack of care taken with my child's future was breathtaking.”

 

  1. [parent 2] “My son’s journey to diagnosis has been epic with Lewisham trying at every hurdle to stop any diagnosis. After a couple of A&E trips whereby my son’s condition had worsened to the point where he was hearing voices and was suicidal and a danger to himself and others, a duty CAHMS worker agreed to support my request for a second assessment for ASD and ADHD. He was eventually diagnosed by SCAAND over seven years after first being referred by health visitors, despite many professionals along the way reporting his difficulties. Although he was diagnosed  in March no support has been put in place other than to offer the same parenting group we have done twice already.”

 

  1. [parent 6] “I am not sure if this is relevant but when [my daughter] was at primary and secondary school they told me she would never get a statement of special educational needs. She started Bromley College and we realised that she was not coping and would fail. In the last term they put in 1 to 1 support to help her manage a pass. They agreed with me that she needed an EHCP. So this second year I applied to Lewisham for Assessment for EHCP. That was in November. They did agree to assess. Then on 2nd February they wrote to me to say they felt she did not need a plan.  We met up at the college and the SEN officer from Lewisham listened to [my daughter] break her heart explaining how she cannot cope and he still said no. Long story short I took it to tribunal and the lady that came from Lewisham SEN was a joke. She arrived 30 minutes late and knew nothing about [my daughter]. The judge didn't understand why it went this far. Anyway the judge has agreed she must have an EHCP.  What annoys me is that has wasted 7 months and will be long time before it is sorted out.”

 

  1. [parent 6] “My daughter gets good support within education because her school is good and some social care support via specialist short breaks. There’s no linkage between the two.”

 

  1. [Parent 7] “We are at the start of our journey into the world of SEN provision. Our son has had to wait two years from referral to assessment and diagnosis. The waiting times are appalling and have meant that our son has now gone through primary school totally unsupported. His school work has suffered terribly and his anxiety has become far more severe, and at times barely manageable, in the meantime. 

 

  1. [Parent 7] This massive delay in diagnosis also meant we were unable to apply for secondary schools through the SEN route and our son has been offered a school we feel is unsuitable for him as a result. We will be appealing and have applied for an EHC Needs Assessment, but we understand that this may well be a prolonged battle in itself.

 

  1. [Parent 7] One of the hardest things is not knowing what we don't know. The primary school volunteered no information or support. We were unaware of the SEN Register, or that our son had been added to it eighteen months ago, and were left believing that no support could be made available in school while he was still awaiting assessment. Whether this is through lack of training, or a fierce guarding of scant resources, the lack of information or cooperation has been deeply frustrating. Various voluntary organisations and websites have been invaluable in finding out what should or could be offered, and how, but it can be almost impossible to find this out, or who is responsible for what, from those who should actually be delivering it.

 

  1. [Parent 7]So, in our experience, there is a need for a major reduction in waiting times, greater transparency, clearer information on pathways, entitlements and options, better trained SENCOs, and greater understanding and awareness among teaching staff to recognise needs and provide a more inclusive environment. It feels like you have to find your own way through this labyrinth and you have to fight for absolutely everything. It is the child at the centre of it who really suffers and pays for this.”  

 

  1. [Parent 9] “I have a daughter in year six with diagnoses of epilepsy, cerebral palsy and ASD. Assessment for support: our experience was that it was a battle to even get a needs assessment for an EHCP, we were refused a needs assessment despite having support from OT, Paediatrician and school staff. There was very little support for appealing the decision (School didn’t know how to go about appealing). We were eventually granted a needs assessment and my daughter received her EHCP 11 months after our first request. In my opinion there is a real need for training of school staff and much much greater transparency between local authority and parents about the process and roles and responsibilities.”

 

  1. [Parent 9] “The only service that reacted quickly was transport, everything else takes ages. Paediatrician or her secretary forgot to schedule our appointment on two separate occasions: first time I was aware when the appointment was supposed to be scheduled and I chased them up "only" four months later as I thought that I must have made a mistake in the timing, second time I've waited for one year to hear from a geneticist that we were promised a referral to (being warned that the waiting times are likely to be long I wasn't too concerned), but it seems we were forgotten once again (this time I managed to get hold of a phone number to the secretary and apparently we were supposed to have a review as well, so will see soon how long we will have to wait for the geneticist). Overall I was reasonably happy with the paediatrician we met, but general feeling from our dealings with the paediatric services, SLT and OT - the waiting times are so long that by the time the appointment finally takes place you have managed to solve the original problem by yourself. Every time the appointment is scheduled you have to chase people up about it and often chase other services that you've been referred to, which takes insane amount of energy.
     
  2. [Parent 10] On a positive side I am really glad that they have drop in services for SLT and OT for minor issues, but the four initial appointments for SLT followed by the time for telling seminars really is too little. I was lucky that we had access to Greenwich's ASD outreach because my son's nursery was right at the border between the two boroughs, but officially belonged to Greenwich and because of that my son could have some version of SLT from them on weekly basis (it took a lot of effort to get the nursery agree to it, but at least they did). Lewisham's ASD outreach team helped us a lot with the EHC assessment because they've seen my son almost every Friday.”

 

  1. [Parent 11] “Historically there’s been a strong sense amongst many families, mine included, that Lewisham don’t really get to grips with the needs of our children, refuse services, or limit services, or opportunities to assess, or issuing of statements/ extra funding, (which would be fine if the needs of the child were actually being met in the schools, but often aren’t) and only when the parents battle like crazy, and bring in big guns like lawyers and private reports  or, more likely threaten tribunal, only then will Lewisham ‘give in’ and listen.” 

 

  1. [Parent 11] Far too many times, Lewisham have refused any intervention for a child until the day before a tribunal, creating all manner of stress and cost for the parents who have to contend with the problems their child is suffering/ lack of proper access to education, preparing to fight, preparing to present their case, pay lawyers, take time off work, feel anxious about the tribunal hearing, and then either.

 

  1. [Parent 11]Hear the day before that Lewisham have pulled out of the tribunal, backed down and will help (assess/ provide statement/ acquiesce to the school of choice etc…..Or even worse, don’t even bother to turn up to Tribunal.”

 

  1. [Parent 12] “The school used informal exclusions and the excuse still that they could not keep our child safe.  Eventually my child had to take GCSEs not having been in school between February and the exams.  However wrong this is, it is not reflected in the school's performance except that the exam results were not as good as they should have been by a tiny margin.  The SEND performance should figure more prominently in OFSTED assessments.”

 

  1. [parent 20] “Each person responsible for child care has an appropriate job specification; and their annual review should be based on parent feedback into staff review This would include the entire team involved with the child. Some team members do not know the law, so full training is needed.

 

  1. My son’s school prevented him from entering exams, and then excluded him for not attending exams. This exacerbated my son’s depression. The LA refused to carry our a review, which resulted in my son’s mental health deteriorating. It took 1.5 years to get an assessment. It is an unnecessary burden on the child.

 

  1. Even with a EHCP plan, its not fit for purpose. As there are no suitable suitable staff to meet the requirements. There is a lack of professionals to work with high functioning autistic children.

 

  1. Staff are ignorant of each other’s skills, and they don’t know who can help. Staff are not proactive and expect parents to push for things.

 

  1. While LA can prepare ‘nice’ paperwork, this is for show. The child’s story is missing from the report. So inspections miss the child’s feelings. This can also leads to inspectors providing misleading findings about local authorities.

 

  1. Some schools try to work with LA, but schools can be hypocritical. Parents feedback is not valued. Parents voice should be given equal weight in decision making. Decisions over children should be by parents and not by cynical staff. Children with SEN shouldn’t exclude children from schools.”

 

 

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

 

  1. [Parent 1] “In addition the final EHCP was sent to all parties other than us. The caseworker apologised and said he would send it recorded delivery - it never turned up and he was unable to provide proof of postage. When we did get it, the 'My World' section that I had spent ages on with my child was not even included. The whole premise of the Children and Family Act was to put children and families at the heart of the process. It's a complete joke”

 

  1. [Parent 5] “It took them 52 weeks for us to get a final EHCP. They refused to assess without grounds, then once they did agree to assess everything took longer than it should. They missed the deadline for naming a suitable secondary school. Our caseworker lied to us about the responses from two schools causing more time to be wasted as they pushed on down a route (mainstream with support) that is clearly unsuitable for our son. We asked to see the response letters from the two mainstream schools they consulted with - this took them two months to do, once we had them in our possession it was completely clear that neither school could meet his needs, and in fact nor could any mainstream school. It was only once a different caseworker was assigned to "help" our caseworker that they agreed with our choice of school (a resource base) but 6 weeks down the line from that we are still waiting for that school to say they have accepted him. Throughout this the SEN team have only communicated with us when we have pushed and pushed, getting councillors and our MP involved. When we do receive correspondence it is patronising to say the least, telling us not to worry and almost patting us on the head. They seem to have no idea that parents of children with SEN team want to be involved and need to know the detail!”

 

  1. Parent 6] “The process was very rushed with a high level of cutting and pasting. There has been no observable difference on either my child’s experience or the organisation of services around her since moving to an EHCP. Zilch impact and not much sense that health or social care had a part to play in the process .It’s a health and care plan in name only.”

 

  1. [Parent 9] “At the moment I am trying to get her EHCP updated ready for secondary school. We have never had an annual review and the plan has not been updated since it was issued on October 2016, despite a new educational psychology report and her recent ASD diagnosis. My daughter waited around 3 years for an assessment of ASD and again there was very little information on the process and it then took 9 weeks for the diagnostic letter to arrive. “

 

  1. [Parent 11] “My own experience more recently, was the lamentable process of transitioning from statement to EHC plan, for my 18, then 17-year-old boy. Every step of the process had to be initiated, and reinitiated, and reinitiated,  by me.  I’d chase and chase and eventually get a date for a meeting with school and Lewisham. Staff would turn up for meetings but none had ever read  up about (son) or had a clue about his needs. 6 months later another staff member would turn up. different team, no idea of prev meeting, no notes, no continuity.

 

  1. [parent 11]Hilariously, after one of these meetings I repeatedly hassled for, I got a courier delivered letter  (on the 28th of the month) advising me that if I didn’t reply / accept the contents of the minutes of the meeting/ objectives and outcomes laid down for the EHC plan, by the 30th of same month, then we would be outside legislative timeline guidelines, and [my son] might not get a statement at all. it was beyond ridiculous. I sent a complaint email to the head of the SEND department. I hear back 6 weeks  month later. The draft EHC plan came 3 months after that. 3 months later, staff had changed again, and I had to start again In the end I, and [my son's] SENCO,  wrote [my son's] EHC plan from beginning to end. I had to fight to get it to make sense.  The school ended up being very supportive, but Lewisham was, frankly, hopeless.

 

  1. [Parent 11] “Staff are sent to meetings, unbriefed, with no conception of what the EHC plan is supposed to achieve. I was involved in consulting with Lewisham when they were pathfinders for the new SEND process, and the development of the new strategy which ditched Statements in favour of the EHC plans. The idea was to make the process more consultative, make the parents and child feel more listened to/ understood in a holistic way .  None of this came across in any of the transition meetings I had. My ASD son dictated to me the answers to all the My World questions, and we took them seriously, transcribing them out for Lewisham to read. They didn’t bother. They grabbed chunks of the text without any real attention. We didn’t not feel listened to/ understood/ cooperated with. All they focussed on was ‘outcomes’ (fine’ but the fellow who attended admitted he hadn’t read any of the paperwork and was basically a ‘scribe’ for the SENCO at the school. It all felt like unnecessary box ticking.”

 

  1. [Parent 12] “Our GP when I was asking about how to navigate the maze of mental health, general health, development  and educational support, asked in all innocence what an EHCP was.  The H is presumably there for a reason.

 

  1. [Parent 12]My child was at a selective school, having reportedly passed the entrance exam with full marks.  Since SEN and ESN are too easily conflated in the minds of the unthinking, a selective school assumes it has no need to consider Special Educational Needs.  The provision was for dyslexia and that was all that was available. The governor with responsibility for SEN spent most of an interview telling me how she knew all about children with Aspergers because her child had that diagnosis.  The attitude seemed to be that the school was therefore capable of dealing with an Aspergers child and any inability to cope was therefore my child's fault.”

 

  1. [Parent 13] “Ambiguity, lack of knowledge and communication, especially re: conversion from Statement to EHCP- this never happened; we as parents applied, were told that conversion was not automatic and that student had to either apply or sign application as aged 18+ years (!); complete breakdown in communication within SEND; eventually assessed and drafted EHCP (exceeding time frame at every stage) but refusing to issue on the grounds that education provider (UAL) stated they would be able to meeting student’s needs out of their own budget (based on brief entry interview with Disabilities Advisor prior to student starting there); on appeal SEND exceeded SENDIST deadlines

 

  1. [Parent 13]Communication problems within and with SEND further deteriorated when applying for EHCP: staff did not appear to have consistent knowledge and appear to be equipped to deal with application, shifting focus from responsibility/accountability within the team from caseworkers to Operational Manager SEN – all in all a harrowing and very frustrating, time-consuming experience for all concerned”

 

  1. [Parent 12] “However much the Children and Families Act  has been progressive beyond the condescension to the 'unfortunates who will never amount to much', too many of the staff administering or avoiding the legislation have this prejudice. Verbatim from an email from the head of keystage:

 

  1. [We] are a mainstream school and so do not receive additional funding for any student with complex needs unless they are in receipt of an EHCP.

 

  1. [Parent 12] The implication in the context being that they therefore had no obligation to 'solve' the problem my child posed. There appeared to be no knowledge of obligations.

 

  1. [Parent 12] Ignorance of the legislation is not confined to schools.  When I wrote (in January 2017) to the minister responsible, Mr Timpson, giving the protracted EHCP process timetable (59 months since application 5 months since letter promising EHCP) and asking why the system was broken, the response from his office said:

 

  1. I note your child is now in education and so I assume that an EHCP has been successfully produced.

 

  1. [Parent 12]A child in education is not necessarily receiving the right support.”

 

  1. [Parent 14] “In preparing my son’s EHCP plan, the school had no supporting documents. Although my son has an assessment from an educational psychologist, a CAMHS team and a dietician amongst others, neither the school nor his dedicated social worker had any of the reports. I had to provide them as a parent, slowing down the sign off his EHCP plan. There was no communication between teams, and having three key social workers in three years meant there was no continuity. Even with detailed evidence, none of the recommendations in the EHCP have been acted on in the past 12 months.”

 

 

The level and distribution of SEND funding

 

  1. [Parent 9] “It feels like a constant battle to get the level of support required and again it seems like there is a major need for training for school staff and greater transparency of roles and responsibilities. There is undoubtedly a shortages of resources and funding. An example is that my daughter’s EHCP specifies weekly counselling but this has been reduced to once every 3 weeks and she shares her counsellor with 2 other children. Obviously I do not begrudge other children getting the support they need but this is funding which I have fought hard to receive.”

 

  1. [Parent 11] “I know they were short staffed, and overwhelmed by the weight of work, so funding is a problem but communication is a bigger one, both with schools, families, but also within the department. Currently my son is experiencing a good financial package from Lewisham and is flourishing as a result. he really is a poster ASD child , because he was, early on, quite significantly disabled, and yet now, he’s well on his way to becoming a very productive and independent member of society, which is what can happen when the funding and the EHC plan and support package is right – in this case, a split placement tailor made to suit him  - and when Lewisham are prepared to be flexible, and pragmatic about how funding is spent.”

 

  1. [Parent 12] “While the school was refusing to consider any additional resource until an EHCP gave them some, the Local authority was equally unwilling to hand over their money.  The first attempt to get an EHCP was driven by us as parents but the submission that was taken note of was that made by the school   It failed.  We then opted for arbitration and succeeded.  The whole process took well over a year. 

 

  1. [Parent 12] Maybe one of the problems was that, living in London, we had chosen a relatively local school that was outside the Local Authority area.  Many of the sources of advice available were only in-borough.  The borough where the school was had one ASD specialist for secondary school age who retired and was not replaced. 

 

  1. [Parent 12] Parents agree that to get an EHCP is always a fight not a guided process. You are battling against the Local Authority and have to find allies to explain the process and understand the tricks such as non-issuing of relevant letters or stopping at draft plan issues. 

 

  1. [Parent 12] Once we had our EHCP, the school, with no expertise to draw on, did not know how to implement it.  It was not written in clear language as the legislation led us to believe it should be written.  We wondered whether the effort in getting it would have been better spent taking the school to the SEND tribunal.  Realistically with a child to keep away from serious self-harm caused by the lack of understanding and accommodation, there is not time to do both.

 

  1. [Parent 12]At the next stage of education, we found that the EHCP was a collection of reasons to exclude.  It listed needs and the establishment seemed very happy to say why they could not supply the support for them.  Our child was rejected by one sixth form college and the FE college where they now study delayed 6 weeks while a protracted, unedifying and incredibly inefficient negotiation was made between the Local Authority and the college.  Eventually, the Local Authority directed the college, which could have happened at the start.  This delay has taken all year to catch up.  Essentially, the existence of an EHCP puts the child on the barrel end of a risk assessment.  Since there is no universally accepted level of tolerable risk (the equivalent of ALARP) the institution can use a very low risk benchmark and refuse the child. “ 

 

  1. [parent 15] “Finance is not transparent. Funding information is not provided to the parent. And  Funding is unclear. Staff do not provide information. My son was allocated 12 hours of support, but it was never provided. So where did the funding go to?”

 

 

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

 

  1. [parent 6] “Aside from the fact that the support from each agency is summarised in the plan there isn’t any meaningful collaboration and integration across services. Communication is very poor and is usually achieved by parents taking information from one to the other”.

 

  1. [parent 15] “Support is extremely slow, but children’s life does not stop. The system lacks humanity and dehumanises the child. The right way is to listen to the child and their carers.  The team has to centre on the person they care for and not the provider.  Autistic children can’t handle stress. The local authority needs to listen to their need. Local authority does not have enough resource to meet children’s feedback. LA does not not respond positively or timely to queries.

 

  1. Ultimately, LAs do not care about SEN children.”

 

 

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

 

  1. [Parent 6] “Awaiting allocation for adult services assessment for care and support plan. Judging by the experience of others this will be another race to the line for completion and there seems to be a paucity of suitable services for this age range. Carers Assessments seem to be totally absent.”

 

 

Other

 

  1. [Parent 8] “The other thing I feel quite strongly about is not necessarily a local but national issue...It's back-classing ​or delayed school entry (primary school) for children (like mine) who are clearly not ready to join school or the following year. Although the curriculum should be differentiated to their needs, I know only too well that pushing them along when not ready can be so detrimental. In most countries in Europe kids start school later (which in my opinion is preferable for any child and especially those with learning/disabilities, who can also be supported outside of school) with and back-classing is also an option.”

 

  1. [Parent 8] It goes without saying, I also feel very strongly that SEND have a duty to intervene as early as possible and reduce the appeal/tribunal cases, wasting  time and money that our kids/parents/families could benefit from...Parents' opinions need to be heard more.” [parent 8]

 

 

Recommendations

 

  1. Based on the previous testimony, we consider that

 

58.1.                All staff involved in developing the EHCP must undergo mandatory training to understand their responsibilities;

 

58.2.                To prevent parents and carers wasting their time, all schools, whether maintained or academies, to display on their website their special educational needs provision, accuracy enforced by OFSTED;

 

58.3.                SEND provision to be part of all OFSTED inspections;

 

58.4.                At the start of EHCP process, parents and carers to be provided with clear guidance with on pathways, procedures and processes and named officials for them to mark and follow the EHCP process, and to be able to hold the local authority to account;  

 

58.5.                Due to the lack of co-ordination by services, copies of all correspondence, reports and other documents are sent to a named key worker and to the parent/carer as a statutory requirement;

 

58.6.                The named key worker to attend all EHCP meetings;

 

58.7.                Local Authorities to pay a fee to the parents  if they failed to attend tribunals;

 

58.8.                A school inspection by OFSTED if any child with SEN is excluded;

 

58.9.                Named officials and milestones to take forward commitments in EHCP, for parent/carers to hold to account;

 

58.10.            The lack of inclusion of health in EHCPs needs to be addressed. Clear links between schools and health service have to be developed and placed in the EHCP;

 

58.11.            Local authorities should be reported on and ranked on their EHCP performance – timeliness, parent satisfaction, delivery of commitments;

 

58.12.            An investigation into schools excluding SEN pupils to improve their exam results needs to be carried out .

 

 

 

June 2018