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You said .... We did ....

See here the Submissions to Cllr Iles and her response

January 2021

Family Voice Surrey has received a significant number of contacts from families in response to an article posted on 22nd December:

Some of the quotes included in this article have caused confusion, anger and distress among our members, who have asked us to raise these with Councillor Iles. They have asked for clarity around some of the comments and we would be pleased to facilitate any communications that the councillor feels able to make, whether in writing or indeed in a recorded conversation.

We share these stories because they are representative of the many conversations we have had about this. Rather than summarising a general feeling, we believe that there is more power in sharing a representative sample in parents’ own words.

You will see from these four responses that the interview has raised a number of uncertainties and a lot of confusion but also a deep yearning for understanding from the families we represent. They are often portrayed as pushy, difficult, demanding - and intelligent - whereas our experience is that these are in the vast majority extraordinarily dedicated parents advocating for their children in a way that highlights exceptional parenting skills. Their experience of navigating the sense system (reflected in FVS Staff personal experiences ) is one that frequently places blame on them as parents for having in some way caused or perpetrated their Childs needs, and then for costing the council large sums of money.

Well we understand the budgetary pressures on councils, we would urge counsellors and all professionals to have care for their choice of language which impacts families profoundly.

A “pushy” parent’s journey

Councillor Iles was recently quoted as saying that …intelligent parents….believed diagnosis for ASD to be a panacea....Her words were met with some incredulity from many, and I, like others, wanted to respond to this as I hope that through sharing the experience of my family, those granted the authority to make decisions about funding, might be better informed to understand parents’ motivations and represent us more fairly, and cause less hurt in how they do so.

My son is Autistic and had a long, circuitous route to a diagnosis. He was screened three times before finally moving beyond the screening questionnaires to a full assessment, from which clinicians stated his diagnosis was actually very clear and robust.

The diagnosis, when it eventually came, was no panacea and I was never under any illusion that it would be.

This fragment of our story as a family casts us very much as ‘pushy’ parents who, at great expense to the local authority, continued to ask for a diagnosis over a number of years. If we did not believe it to be the panacea, why did we do this?

The effort involved was incredibly draining to say the least, so it was not an exercise undertaken lightly. The process is exhausting. There is a long wait. There are many, many phone calls (often highly frustrating ones, because the services involved are so stretched) and all this in the context of a busy family life (working lives already impacted by the additional needs of frequent health and education appointments, as well as sleep and relaxation being impacted by the needs of the child). Alongside this were the constant nagging questions of ‘are we doing the right thing/ should we have pushed harder earlier/ is this worth the stress involved/ do we want our unique, vulnerable son to have a label? When an assessment date eventually came up, we had to drop everything and abandon a couple of days of our family holiday to take our son to the assessment centre.

So why did we think a diagnosis was worth pursuing? It is often suggested that the ‘label’ is unimportant from an educational perspective, as the most important thing is to get the right support in place. My son had additional support in place at an early stage to help him manage at nursery and then at school. He found both environments incredibly challenging and was able to get good support in place without a diagnosis, the much-coveted EHCP with a high level of 1:1 support. In part his support was good because staff assumed he had ASD and used strategies that have been found to support autistic children, as well as other incredibly child-centred practices of just going with what he showed he needed - he can’t manage sitting on the carpet in his carpet space, so the team tried allowing him to sit at a table nearby, where he is comfortable with a quiet sensory toy - hey presto, the disruptive child unable to keep still can attend to the class activity.

There were several reasons ultimately for pursuing the diagnosis. Whilst individual staff members at school were incredible, the level of understanding of his need varied greatly and this impacted our son tremendously. As children grow older, schools have increased expectation of children which is based on the more linear development of the majority of children. Our son’s development was quite circuitous - he had a spiky profile of abilities and he also varied dramatically from day to day. As he moved through junior school the expectation was that the level of support should be reduced - the sensory toys, movement breaks and level of 1:1 support should be phased out in preparation for high school. Of course, children’s needs change over time and independence should be promoted, but at times it felt like all the support structures that held him together in school were being systematically removed. As a parent it is hard to watch your child moving towards a precipice and this is how it felt, especially as we were told at his year 5 annual review to consider specialist settings.

At this stage the evidence that sensory difference was real - not just immaturity that could be grown out of - felt important for everyday needs at school and the diagnosis would be required for him to be considered at specialist schools.

The diagnosis came too late for him to have time to consider a specialist setting in year 7, but in year 8 he is now at a school for autistic young people and his sensory needs are well understood.

The final reason for seeking diagnosis was the most important reason of all. As parents we wanted our son to understand who he is and how his brain might just work in a way that is different from but not lesser than those of his peers. When you read accounts of autistic adults diagnosed in later life it is clear that they overwhelmingly wish that they had understood their autistic identity earlier and that they feel this would have helped their self-esteem and may have prevented some periods of poor mental health. Early diagnosis can lead to better outcomes - the right educational support, the right educational setting and improved sense of self and mental health.

In terms of the local council’s planning, an earlier diagnosis would also have allowed the education authority to plan better for the provision required and reduce the need for lengthy travel to more costly provision in the non-maintained sector. So, the need for diagnosis impacts the child, the family, the education settings and those planning services and should be understood as such and not used to vilify parents.

It’s a false economy of SCC to cut spending on early assessments

‘Cllr Iles said: “There’s a number of contributing factors for why we have a large instance of EHCPs – including but not limited to inconsistent practice in the past and a high level of parent expectation in thinking a diagnosis would provide a panacea, schools believing an EHCP was needed to be able to support inclusivity and insufficient use of early interventions at early years stage.

“About one third of diagnoses in Surrey have Autistic Spectrum Disorder as the main presentation of SEN and we have a large number of intelligent parents, which may be linked – we’re doing some work with South Bank University to understand that some more.”’

  1. I suppose that Cllr Iles would class both me and my husband as ‘intelligent parents’, as we are both educated to degree level. I find Cllr Iles’ comments about SEND parents both concerning and offensive.

  2. My son went all the way to through mainstream secondary school to Year 9 being punished for his behaviour, and was frequently isolated and excluded. He was only referred for assessment when he was struggling so much that it was suspected (by the psychotherapist who’d been brought in by Adoption Support to work with him) that he had PTSD.

  3. I regret that I had never asked for an assessment for him, as I trusted that education professionals would ask me to do that if it was needed.

  4. I had never heard of an EHCP until the same psychotherapist mentioned the word in a meeting with my son’s school in Year 9.

  5. Once assessed, my son was diagnosed with ADHD along with, as a result of being undiagnosed and therefore unsupported, high levels of anxiety.

  6. At 15 he became so anxious about school that he stopped attending altogether. He then moved to a different mainstream school in another county.

  7. Once he had a diagnosis, and then an EHCP, life became a lot better for him because staff at the new school supported him rather than punished him, and he managed to sit his GCSEs, although he didn’t pass any of them. I deeply regret that this support came too late for him, as so much damage had already been done by his previous school.

  8. My son is now in Year 13 and is not in education or training, mainly because of his high levels of anxiety. I firmly believe that if he had been referred for assessment and then diagnosed when he was at primary school, he would have been supported rather than punished at secondary school, his anxiety would not be disabling, and he would still be in education now.

  9. I am very worried about my son’s future, as he has no qualifications and has never had a job, although he would like one. He has just started claiming Universal Credit, and I fear that his will be a life on benefits unless he finally receives some support which can help him.

  10. My son’s case shows that it’s a false economy of SCC to cut spending on early assessments and support for children with disabilities.

  11. I hope that Cllr Iles will make the effort to find out the reality of life for SEND parents and children, and to think about how to improve things, rather than making ill-informed and offensive comments like these.

How does spending in childhood services affect adult services? Know the data

Underfunding SEND will lead to increased spend in social services and mental health services. These services can’t cope already. I predict an increase in admission to mental health hospitals, suicide and crime (triggered by lack of education, opportunity and radicalization of the vulnerable) in the future. In short, it is bad for society as a whole to marginalize one section of society.

Is there a correlation over time between spending /services in SEND childhood and

  • Mental health issues?

  • Suicide?

  • Crime?

If they don’t know the answer then they are not collecting and managing their data properly.

# Disabled, not irrelevant

It’s unfair to lump the overspend solely on the SEN budget…

The very first thing I would say is it would be interesting to see the figures of Councillors and MPs expenses compared to the overspend of SEND provision… If they are claiming expenses for travelling in a taxi to work, then why should any SEN child be refused this right?

Secondly, I would imagine in a number of cases most of the money spent on SEN provision within mainstream schools would benefit all children not just those with SEN. It is therefore unfair to lump the overspend solely on the SEN budget.

Surrey has a relatively high number of children with Education, Health and Care Plans (EHCPs), which identify what additional support is needed - 10,644 as of November.

Why is this a problem? I understand that if EHCPs are in place where an IEP or SEN Support Plan would suffice then that’s fine. However, as a parent an EHCP provides you with the legal right to challenge where as a support plan doesn’t hold the schools to account like an EHCP does.

Cllr Iles said: “There’s a number of contributing factors for why we have a large instance of EHCPs – including but not limited to inconsistent practice in the past and a high level of parent expectation in thinking a diagnosis would provide a panacea, schools believing an EHCP was needed to be able to support inclusivity and insufficient use of early interventions at early years stage.

The system is broken!! You need a diagnosis in order to get support and intervention. Without a diagnosis you don’t get the support you need in order for your child to thrive. It also provides parents with comfort that they are not alone in seeing the issues that they have identified in their child. We don’t “believe” we need a diagnosis – it is a fact! Wouldn’t it be lovely if the absence of an EHCP didn’t affect the school’s ability to successfully achieve inclusivity within schools? But this simply isn’t the case. EHCPs are underpinned by the SEN Code of Practice so until there is something more sufficient in schools to hold them accountable for inclusivity, I think we’ll stick with our EHCPs. Getting early intervention as we know is a huge problem. They are so reluctant to diagnose early and won’t provide intervention without a diagnosis. Waiting times for Speech and Language Therapy can be up to 12 months and sometimes more. You can’t talk to a Health Visitor about your early concerns because of the lack of family centres and drop in clinics. Parents feel incredibly alone and isolated during the period of identification to diagnosis with little or no support and intervention in between. Portage is a wonderful service but the wait time is simply too long.

“About one third of diagnoses in Surrey have Autistic Spectrum Disorder as the main presentation of SEN and we have a large number of intelligent parents, which may be linked – we’re doing some work with South Bank University to understand that some more.”

This is an incredibly offensive and completely incorrect thing to say! Where on earth has the statement come from? What research was conducted to make reach this conclusion? It’s such a “Surrey” thing to say as well! Does it suggest that if you are unintelligent you are less likely to have children with ASD? Or that two intelligent parents will create an ASD child? Or that something intelligent parents are doing environmentally is contributing to an ASD diagnosis? Or is she suggesting that unless you are intelligent you are incapable of obtaining a diagnosis? We know that ASD does not discriminate and this statement is not only offensive it’s dangerous!

The council is concerned how many schools receive the additional funding despite having a budget surplus. They think the extra money available might even be an incentive to apply for EHCPs where they may not be needed.

No, no and no!! This is an abhorrent suggestion. The process is long, drawn out, impactive on children and their families. Not to mention the ridiculously high case load of case workers. And it is suggested that schools are going through the process in order to obtain extra money?

If schools can demonstrate that taking away the money would have an ‘unavoidable detrimental impact on pupils in protected groups under the Equalities Act’, the council said a transition period would be considered between April-September.

It should not be down to the school to show that it would have a detrimental impact it should be down to the government to prove that it won’t!! And when it is proven that it will have a detrimental impact (which it will) there should not be a transition period – it should simply be revised. A transition period will not stop the detrimental impact it will merely delay it.

“The extra work might discourage mainstream schools from taking children with SEN.”

100% - well said that lady!

It is hoped this will reduce day-to-day costs, firstly by being able to pay for fewer placements at more expensive independent schools, and secondly by avoiding transporting pupils outside of the county to go to school.

Absolutely. If more places were available then there would not be the need to rely on independent schools. What should also happen is to look logically at where a family lives. For example if you live on the border of another local authority and you are geographically closer to a state SEN provision over the border then that should be the logical placement and not sending children to schools within their own local authority just for the sake of it. They also need to look at the logic of transport. I know of families who have multiple taxis for 2 children within the same house going to the same school because they have different start and finish times!! What a waste of time and money and actually damage to the environment.

Response to submissions from Cllr Iles

I would firstly like to reassure parents (and carers) that neither I, nor officers who are spearheading our improvement journey in SEND practice hold the view that parents of SEN pupils are pushy, difficult or demanding.

The comments in the Get Surrey article are merely an extract of a much longer conversation with the local democracy reporter. The main thrust of the article was about the highly complex funding streams and consultation that was underway with schools’ forum. A “politically” motivated campaign had built up around this and was derailing our ambition to target top up funding to follow the child in the mainstream setting where they are currently on role so that it achieved maximum impact and best outcome. The decision on this matter has been delegated to an officer not a councillor on this occasion.

Whether I was flagging towards the end of this interview and didn’t explain fully or whether the reporter missed relevant parts I cannot be sure and I do not want to apportion blame incorrectly. However, I can see how the comments as they stand do not sit well. I offer an apology for any offence caused as it was unintended.

The first submission “a pushy parent’s journey” conflates two separate quotes but if I’m reading their journey properly it makes the point I was trying to explain. It may help to know that I had to navigate the system some years ago in order to access extensive speech and language therapy for my son so that he was able to access mainstream school. A formal diagnosis took a long time and much effort and in parallel we sought early intervention. My comments did recognise that practice has been poor in the past (and we are still working hard to improve) and one of the ways we are doing that is through the Early Intervention Fund which has provided over 250 mainstream schools and settings with funding for early support for 620 children. We have also invested in the Graduated Response to use professional expertise from SENCOs alongside Early Years Advisers and the school-age funding of the Local Learning Fund to build capacity in schools to respond earlier to children’s needs without reliance on an EHCP. I agree with parents that early support in conjunction with timely assessment/diagnosis when needed allows for better planning.

I think that picks up on the submission around spending in childhood services and I know from your comments at our most recent meeting that SCC have now been much more open with you and that we share date which has assisted in building trust.

To the other main point, in the submission on early assessments and that headed as overspend on the SEND budget, that of “intelligent parents”. I was attempting to highlight the work that we are doing in our All Age Autism strategy and drawing out some of the early analysis linking needs and the county demographics. I was not for one minute suggesting that parents were using their intelligence to game the system, or that all parents of a child with autism also have autism. For any offence caused I apologise.

I hope that your operations lead at Family Voice Surrey has been reassured by our discussion of these points and that she feels able to confirm that in the two years I have held this portfolio we have worked tirelessly to improve things, that we are working with schools to foster inclusivity and we are providing more specialist places so that our pupils are educated closer to home and in their own communities. This is against a backdrop of funding pressures which we have balanced by using our own reserves and we continue to make representation to government for increased funding. We want to continue the collaborative work, we need to continue to hear views so we can get things right and I thank you for your reflections to enable us to do that.

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