Thematic summary of evidence submitted by parents and carers (SEN 894)

 

Solving the SEND Crisis

Education Committee

 

Introduction

  1. The Committee’s inquiry Solving the SEND crisis received a large number of submissions from individual parents or carers of children and young people with SEND. The following document provides a thematic summary of this evidence.

 

Methodology

  1. 277 submissions to this inquiry were categorised as being from parents or carers. Approximately one third (87) were randomly selected for in-depth thematic analysis, involving manual review and categorisation using NVivo. This document provides a summary of the key themes and issues found in this analysis, with quotes provided for illustration. All quotes are in italics and are unedited. Anonymous and confidential submissions were analysed but have not been quoted.

 

  1. The remainder of the submissions were reviewed with the assistance of Copilot, which confirmed the themes found in the previous analysis.

 

Systematic failures

  1. One of the most common themes mentioned by parents and carers was systematic failures – that is, failures built into the design and functioning of the education system.

 

  1. Of these mentions, almost half were specifically in relation to systems of accountability and compliance, particularly in relation to schools and local authorities. Local authorities have statutory duties to provide appropriate assessment and care in a timely fashion, and schools have a duty to use funding appropriately. However, the parents and carers believed that schools and local authorities were failing to comply with their duties, and that a significant reason for these continued failures was because they are not held accountable.

 

  1. This lack of accountability was partly attributed to lack of independence within the system – assessments and decisions are not made independently of council budget constraints, meaning that the creation of an EHCP can be inappropriately influenced by budget constraints, limiting the provisions made to children in need.

 

  1. Parents and carers also linked accountability with oversight, particularly regarding school spending and local council decision-making. Some believed that SEND allocated funding was being spent on other areas, leaving SEND provision under-funded. Schools were also accused of illegally off-rolling, due to Ofsted related incentives.

 

  1. Parents and carers also raised the limitations of recourse due to the limitations of regulatory bodies (Ofsted and the Local Government Ombudsman) to affect change and penalise organisations where wrongdoing was found. In particular, parents and carers noted that where tribunals found against the local authority, the local authority made no changes to their process in response. Local authority staff involved with failures have gone on to have successful careers, including one example where staff are now senior advisors on SEND within the Department of Education.

 

  1. Academy schools are not beholden to the council and often ignore or just pay lip service to their requests. Please remember that when we complain and end up at LGO it is the council that gets named. The school gets off scot-free!

 

  1. Having spent much of my working life within the Criminal aspect of the Law, I have been absolutely stunned with regards to how fractured and fragmented the current system presents with the complete lack of accountability; failure by Public authorities to adhere to the legal principles and timescales and complete disregard of the children and young people that the system is purported to support in favour of seeking the cheapest outcome; withholding access to recommended educational provision or instigating delays in order to save money.

 

  1. Accountability within SEND is crucial to re-establish trust and confidence within the system. There is absolutely no accountability within the system and as a direct consequence, Local Authorities are making a mockery with little to no culpability. Public bodies such as the Tribunal Service and the Local Government Ombudsman, who are responsible for investigating and upholding any injustices are simply overwhelmed and their powers restricted. Within our area alone, 5 consecutive years running, the Local Government Ombudsman has had cause to write to the Local Authority with regards to the endless complaints, delays and fault findings against them, yet breaches of statutory processes continue to increase at an alarming rate with no resolve

 

  1. Ofsted inspected my child’s school last year and sadly despite direct correspondence from many of the SEND parents, concerns about inclusivity were not taken seriously because there was no statutory duty to inspect the level of inclusion.

 

  1. Despite the potential risk to my youngest daughter's health, the secondary school faced no consequences for their misrepresentations and inaction. This lack of accountability underscores the urgent need for a centralised database to track such failures and ensure schools adhere to SEND Code of Practice and safeguarding procedures. This should then be part to OFSTED as part of an inspection in the same manner as complaints to ensure incidents have been rectified.

 

  1. You will hear a lot about perverse incentives during the course of this inquiry. But there is no incentive more perverse, more noxious, more corrosive to public service than the freedom to ignore statutory duties and professional standards without consequence. None.

 

  1. The local authority team leader who attempted to gut my eldest’s son’s first EHCP – to the point where his draft plan no longer even said that he was deaf – ignored professional advice, ignored statutory duty, and refused to document the reasons for their decision. That team leader not only experienced no consequences for that behaviour; they are now one of the Department for Education’s leading SEND professional advisers. The strategic leader that this local authority employee reported to is now the Department for Education’s lead SEND commissioner for service improvement.

 

  1. Nobody enforces statutory duties and professional standards in SEND. There is nothing apart from judicial review that holds central government, local government and health bodies to account when resources are not matched to meet need.

 

  1. This breeds accountability sinks, and these accountability sinks trap insight and information. That means the centre has no idea what is going on at the periphery. Insanely, nobody – not Whitehall, not even the National Audit Office – now knows how much money is spent on SEND each year across education, health and social care.

 

  1. Schools/LAs need to be held accountable for their failings. I have plenty of evidence to how my daughter’s school failed her (including safeguarding failings), yet there was no help or support anywhere. Things were covered up and we were not listened to. This resulted in a disability discrimination case against them - our daughter did receive an apology, but despite this (and evidence even showing that they broke the law), the teachers involved got promotions, whilst I, on the other hand have no other choice but to reduce my hours as a childminder (putting yet more stress and a financial strain on us as a family) to home educate my daughter, who now has a diagnosis of school trauma and school anxiety!

 

Inter-organisational working

  1. Another systematic failure raised by parents and carers was failures in inter-organisational working, particularly with respect to the healthcare and specialist support systems.

 

  1. Children and young people with SEND rely on services provided outside of the education system, such as medical care, mental health support or specialist support services including speech therapy. Where access to the services is not adequate, parents and carers noted that this can reduce the efficacy of SEND services, as some of these children and young people are unable to access education.

 

  1. Parents and carers also raised issues due to a lack of integration: some children and young people’s needs may be siloed into different areas, such as mental and physical health, meaning that they may not access care for all their needs at the same time, or be redirected to multiple services. Parents and carers also mentioned that a lack of integration in information sharing made the process of accessing support much more burdensome, involving seemingly unnecessary duplication. Some parents and carers were also concerned about the risks of children falling through the cracks left by a lack of integration.

 

  1. Profiles of children with information of their needs and history should be in one place and be able to be shared between services, the excessive amount of paperwork that has to be completed for children is a waste of the SENCo’s and parents time, especially for children with complex profiles who need involvement from multiple services ongoing throughout their education. As a single parent, working full-time with 3 children with additional needs I cannot quantify how much time I have wasted filling out forms seeking support and understanding of my children.

 

  1. CAMHS have been more hindrance than help. Why? Chronically underfunded, poor retention of staff (why? - because the sheer amount of referrals for C&YP coming in with cases that are so acutely complex and quite often beyond help- leads to the individual professional who feels overwhelmed by the state of their patients, not wanting that level of accountability or empathy) and seeks work elsewhere - normally in private clinics that 99% of us parents cannot afford!) and finally waiting lists that are YEARS long. If you are lucky enough to get a diagnosis for your child's ND then that is it, there's no follow up support. There's no accountability for any professional to put in accommodations to best cope with that diagnosis, it all falls back to the parents.

 

  1. Both my children's reports were never passed on from their schools to their college. Why would BANES assess a child & not share the findings? No child can be helped without sharing the SEN need.

 

  1. Firstly, there needs to be a collaborative approach across the board; too often services/sectors work in siloes. This results in no-one (aside from the family/carers) having a full oversight of the person with SEND and families having to relive the detail over and over again. It is absolutely exhausting for families/carers to have to re-count their child/young person’s journey to multiple layers of professionals from multiple service streams. This in itself can also be triggering for families.

 

  1. My daughter’s school with ERB had a SaLT who worked in the MS part of the school, but who wasn’t allowed to help the students in the ERB… Currently none of the separate parts (and often many separate parts and roles are required to really help a SEND child achieve) work together.

 

  1. SEN support needs to be a multiagency system which shares resources – so that parents and children are not batted between the services and denied access based on “criteria” formulated by each of the separate agencies. The only criteria that should be required for provision is the presence of need. Let’s keep it simple.

 

Local authorities

  1. Parents and carers also discussed local authorities specifically in their evidence, although not always in the context of systematic failures. In particular, they raised issues around prioritising cost saving, including to the detriment of following the law, and the impact of the Safety Valve. Parents and carers also noted the adversarial nature of their relationships with local authorities, forcing them to resort to tribunals, and a lack of communication from the authorities. Some parents and carers also raised concerns regarding turnover of caseworkers in local authorities, meaning parents had to re-explain their children’s needs, and reducing follow-through with agreed plans.

 

  1. At pretty much every step, the local authority were incompetent and in breach of the law. If we didn’t have the money to see a private paediatrician, we would not have our child in education.

 

  1. It can be seen from the above that, in our experience, the main delays associated with EHCP process stem, not from an inability of the LA SEND teams to assess children and write EHCPs within the prescribed timelines, but from a systemic cynicism and/or negligence within the LA assessment process which produces catastrophically bad (and illegal) assessments and necessitates a protracted appeals process. This is compounded by insufficient capacity and/or an inappropriate mechanism at key points in the process (most notably in our case, independent report quality review and DMG).

 

  1. Previous experience in engaging in the Local Authority complaints process has been at best underwhelming and at worst lacklustre. The complaints procedure is fraught with maladministration, significant delays and the formal responses, if you are successful in securing a response are condescending and indifferent, endorsing the complaint and their position with re-assurances that they are implementing improvements which never come to fruition and time and time again, they continue to promote practices which are complicit in breaches of statutory processes and timescales.

 

  1. Actions agreed at previous review meetings are not carried out due to the constant change in staff at the local education authority. We had to fight for over 2 years to get a specialist Sensory Integration Occupational Therapy Assessment.

 

  1. Review the content of EHCPs - many are so poorly written with no SMART objectives and large amounts of copy and pasting—they are near useless and hard to understand or implement. One provider said she had three arrive in a week and throughout they contained the same text.

 

Mainstream education

  1. Another common topic raised in evidence from parents and carers was mainstream education.
  2. Parents and carers discussed aspects of mainstream schools which made them inaccessible for children who may otherwise be suited to a mainstream education. Examples of inaccessibility included behaviour policies, access to toilets, and social and sensory challenges. Some parents felt that policies in these areas were unnecessary and made schools inaccessible to their children. They also felt that these policies were potentially harmful to all children and that designing them to be inclusive would have benefits for all children.. These parents were often particularly concerned about children who had not received an assessment, diagnosis or EHCP, in which cases schools would not be flexible with responding to the needs of these children. Some parents noted that this pushed them towards seeking a diagnosis which otherwise may not have been necessary. Some parents and carers felt that mainstream schools need to be more flexible to enable them to be more inclusive, such as allowing hybrid schooling.

 

  1. The National Curriculum as it stands does not appear to be inclusive. For example, at age 9 my children are currently doing Maths 4-5 times per week which involves spoken input and then activities which all require them to sit, process and apply what they have been taught. All of which is challenging for a child with difficulties processing spoken and written information and sitting still at a desk for long periods. At age 9 they have art for an hour a week only one term per year. The strengths of many SEND children lie outside more academic topics, and the minimal amount of creativity and innovation involved in the curriculum already ensures these children are excluded and shows them their strengths are of little value reducing their self-esteem further.

 

  1. The recent move towards stricter, more ridged rules-based system has seen and improvement in academic attainment, and for many students works well. Where this is not accompanied by flexibility and an understanding that not all children learn in the same way or can conform to the same rules, those children suffer discrimination and reduced opportunities.

 

  1. The change in environment and multiple daily transitions made her autistic traits more obvious and she was assessed and diagnosed with autistic spectrum condition (ASC) and subsequently ADHD. I still question who needed the diagnosis, the child or the school? The environment or the child? Without private funding she would still be waiting for an assessment. A diagnosis of neurodivergence should not be needed to meet a child’s needs.

 

  1. Locally many of the schools have adopted similar no exceptions behaviour policy. Children with additional needs leave or are excluded. A lot of very well-behaved children have high levels of anxiety relating to fear of getting behaviour points for minor issues (like not having a protractor in their pencil case).

 

Teachers and staff

  1. Parents and carers also noted challenges regarding teachers and other members of the workforce in schools. Some felt that staff in schools did not have sufficient understanding of the needs of SEND children, particularly neurodivergent children, and that more training was necessary for all staff. Some parents and carers also felt that there was not enough staff, particularly staff with SEND specialities such as SENCOs and staff with experience. Some parents and carers were also concerned about insufficient access to specialist support within schools.

 

  1. Staff training to understand the experiences of SEND children in schools appears to be minimal and doesn’t demonstrate the diverse profiles of neurodivergent children particularly children that don’t present as stereotypically autistic. My daughters are continually met with misunderstanding in all areas of their lives as they present as ‘shy’, ‘scared’, ‘not brave’, ‘not resilient’ as there seems to be limited understanding of children like them. The focus always seems to be on making them more resilient and braver rather than making them feel safe, so they are able to come to school and learn.

 

  1. Training – Mainstream teachers/LSAs do not have sufficient training to deal with those with additional needs. The need proper training from specialist, lived experience practitioners so that they can really start to understand the needs of their pupils.

 

  1. In our experience, SEN support is still not treated as a core function within mainstream schools, either primary or secondary. The SENCOs at both our children’s primary school and their allocated mainstream secondary school were part-time, both juggling teaching responsibilities alongside their SENCO role and other responsibilities (the secondary school SENCO was also one of the deputy headteachers). Both SENCOs were completely overwhelmed by the number of children in their purview, which often left them unable to respond to emails from parents, let alone effect meaningful change for children with SEN.

 

  1. More external support is needed to help schools support more specialist needs, for instance emotional and social support, speech and language.

 

School incentive structures

  1. Parents and carers also wrote about the ways in which incentives within the accountability framework for schools work against inclusivity. In particular, parents and carers felt that the push for attendance was harmful, as it could be discriminatory against disabled children. Some also reported that they felt they and their children had been treated aggressively and threatened by attendance officers. Parents and carers felt that schools are also incentivised to ‘off-roll’ SEND students, in order to improve Ofsted or academic metrics. Some also reported that schools were ignoring EHCP requirements.

 

  1. Stop the schools forcing them out. Schools are purely ranked on SATS results and OFSTED ratings. This is what is forcing schools to fail to support SEND kids.

 

  1. She was not given a prom ticket with her peers because she was sick for two weeks in the winter. Despite keeping the school fully informed and her being a model student - attending all the extra revision classes, having no demerits in her entire education, representing her country in her sport and coming out with all 9s 8s 7s and one 6 - she was punished for being sick because her attendance was low for one winter.

 

  1. Obsession with statistics and league tables – this cannot continue if schools are to be inclusive. Some SEND children will not achieve as well or on the same trajectory as their peers – this will result in a poor show on the league tables which the schools are told by the DfE are important above everything else.

 

Process

  1. A large proportion of parents and carers found the process of accessing SEND support to be overly burdensome.

 

  1. They feel that the current process requires parents and carers to push for access - using words like ‘battle’ and ‘fight’ - making sure referrals are made, correcting errors in documentation, and chasing caseworkers. Some parents and carers also mentioned that there was a large amount of paperwork and red tape, and they had to reach out to multiple services to provide a variety of evidence of their children’s needs. A large challenge raised regarding the process of accessing support was the long delays, both for local authorities to produce EHCPs and regarding waiting lists for specialists, including those who can provide diagnoses.
  2. Some parents and carers also noted that the process required specialist knowledge of the system, such as legal expertise, and some reported that due to delays they have had to pay for support privately.

 

  1. Profiles of children with information of their needs and history should be in one place and be able to be shared between services, the excessive amount of paperwork that has to be completed for children is a waste of the SENCo’s and parents time, especially for children with complex profiles who need involvement from multiple services ongoing throughout their education. As a single parent, working full-time with 3 children with additional needs I cannot quantify how much time I have wasted filling out forms seeking support and understanding of my children.

 

  1. There's no accountability for any professional to put in accommodations to best cope with that diagnosis, it all falls back to the parents. The same parents who then spend hours, days, months, reading, seeking advice, support, making endless referrals which all ask the same questions (or thereabouts) just to hit yet more brick walls. Complaints put in, not resolved, MP involved but has no power, it all comes back to the parents.

 

  1. Compared to many other parents of SEND children I speak to I have had a less traumatic experience than most with [local authority]. However, I suspect that is because after an initial refusal to assess my son for an EHCP I involved an experienced lawyer and undertook to have my children assessed by high quality independent experts. Being unable to find a legal reason to be unreasonable they have been forced to be reasonable.

 

  1. My daughter just needs a small bit of support, she has a diagnosis, why am I then having to take up another year of time and money to get an EHCP if she doesn’t need a teaching assistant, doesn’t need a special school. She just needs print outs, THE teacher to check in on her that she understands what she is having to do, understands how long she has to complete the task.

 

  1. It is worth noting that the time delays in our case, as set out above, were comparatively short. This is in part because of our proactivity as parents. In total we needed to make more than 50 phone calls and send more than 100 emails and text messages, to LA employees and elected representatives, in order to achieve the above timelines. It should not have to be like this.

 

  1. The EHCP document itself must be simplified, with step-by-step guidance on how it should be filled in. This could be achieved with a simple video tutorial that could be adopted by all LAs and available to parents who often work with their LA/ nursery/school to create and edit the document. This video could include a downloadable ‘dummy’ example document that could then be adapted. Guidance on specific legal language should be included. The document itself is currently too complex and if you don't have access to someone with a law degree, you're basically stuffed! It feels at the moment that the document is deliberately opaque so that the LAs can wriggle out of their legal obligations.

 

  1. Every moment of my child’s exclusion and EHCP process has been exhausting, and even I have struggled with the process. If I have struggled and have the knowledge of 20 years in childcare including being a SENCO in my setting, I can't imagine how parents who don’t know or understand how the education system works feel through this process. It is a constant battle to get my son the right support, the right school, and to get staff to understand his needs. And this battle is not just once at the time of the Exclusion, Appeal or EHCP but also for every annual review, every new teacher, every new school change.

 

Support systems

  1. Parents and carers also raised their need for more support throughout the process of accessing services. Many parents and carers said they would have liked guidance and advocacy throughout the EHCP process. They also said that they should have been listened to more, both by teachers at the point of raising initial concerns, as well as during their interactions with the local authority.

 

  1. There is a lack of post-diagnosis support for neurodiverse individuals. Once a diagnosis is made, there should be a clear pathway for ongoing support and intervention. Establishing a structured post-diagnosis support system is crucial to ensure that neurodiverse individuals receive continuous and appropriate care. From our collective experience and local Neurodiverse and disability groups to which we are a part of none of us have received sufficient if any post diagnosis support, in fact most of us were provided the diagnosis and discharge of our children within the same letter. The only support in which we have experienced and found is that provided by other parents.

 

  1. But for early intervention to work, parents/carers need to know where to go to find information/what services they can access. Make it easier to navigate to find help. Too often the local offer on an LA website doesn’t clearly signpost help/service offerings and information is buried across multiple pages. A cynical view would be that this is done deliberately.

 

  1. Understandably, being a first time parent has its own challenges but the ones I h ad to face left me feeling lost and overwhelmed. I often wished I had an advocate to support me with appointments, filling out forms and to speak about my feelings and concerns with.

 

  1. Despite my efforts to contact the school and seek appropriate assistance, my requests were ignored, and I was left to navigate the complex system alone. Eventually, after much persistence, I successfully applied for an EHCP, which recognised his vulnerability and need for additional support. This process took an exhausting 18 months, and it was only after receiving the EHCP that my son was able to move to a specialist performing arts academy, where he finally began to thrive.

 

Provision and availability of support

  1. Parents and carers also felt that support and provisions for children with EHCPs was insufficient, even once this was accessed. For example, it was felt that there is insufficient respite care, specialist schools are not open for long enough, and carer’s allowance is not high enough. Multiple parents and carers said they were unable to work because of this.
  2. Parents and carers also reported that limited access to specialist support services, as well as the burdens of pursuing such support, had reduced their ability to work full time. This could be due to the requirements of caring for children while support is not forthcoming, as well as exhaustion from the stresses of the process.

 

  1. If you are lucky enough to get a diagnosis for your child's ND then that is it, there's no follow up support. There's no accountability for any professional to put in accommodations to best cope with that diagnosis, it all falls back to the parents. The same parents who then spend hours, days, months, reading, seeking advice, support, making endless referrals which all ask the same questions (or thereabouts) just to hit yet more brick walls. Complaints put in, not resolved, MP involved but has no power, it all comes back to the parents.

 

  1. Currently, many, if not most specialist schools finish earlier than mainstream schools and most do not provide any form of wraparound care. This rigid schedule creates a substantial barrier for parents like me, who wish to contribute to society through full-time employment.

 

  1. As a family this has put us in a crisis position, I have had to cut my work hours in order to support both teens, I have had to fight the system for support and their right to a suitable education.

 

  1. Provide legal aid or funding for SEND tribunal cases to reduce the financial burden on families forced to litigate.

 

  1. The whole process of applying for and updating EHCPs is emotionally devastating. From the bombshell diagnosis and the grief that comes with that, through to navigating the gruelling EHCP process, parents are just left feeling exhausted, depressed and hopeless. I was literally handed a piece of paper about autism on diagnosis and left to get on with it.

 

Funding and resources

  1. A large number of parents and carers discussed the availability of funding and resources in the SEND system, often blaming a lack of them for the problems within the system. As discussed above, some parents and carers felt that local authorities prioritised their budget over the needs of children within the SEND system – some argued that this was due to the limited funds within the system, suggesting that with increased funding local authorities would be able to alter their behaviour. The Safety Valve system was also raised in this context, with some parents and carers stating that the Safety Valve programme restricted local authority budgets even more, preventing access. Some parents and carers discussed how this led to wasted funds from resorting to tribunals.

 

  1. I also feel that a lot of money is wasted on local authorities refusing to assess needs or issue an EHCP and going to tribunal instead of working with families, who understand their young people and can see the struggles that they go through.

 

  1. This is a big area for LAs, who are struggling to meet the needs of those with SEND and because of successive governments imposing funding cuts, find themselves walking an extremely thin budgetary tightrope. Because of funding deficits/struggles, too often pupils are not being given a chance to thrive because needs are not being met.

 

  1. There is no doubt in my mind that all decisions within this controversial system are exclusively founded and influenced by financial constraints. This has been mooted and documented by the Local Government Association asserting parents are vexatious in their expectations with the system.

 

  1. We have seen school refuse to assess children because they had spent their budget for Ed Psych’s that year. Needs a better way of funding EY assessments.

 

Funding for specialist resources

  1. Some parents and carers also discussed funding and resources with regard to personnel and specialist resources, such as having funding to retain experienced teachers, to provide school places, and reduce waiting lists for provision.

 

  1. The funding offered to support my son with an EHCP is also not enough to cover the costs of a trained HLTA or class teacher to support him for quarter of a term, let a lone a year.

 

  1. They felt he would be a good fit and they could support him, however they did not have space to take him. This mainstream school are willing to expand there SEN hub and have the capacity to do so, but yet are unable to secure any funding in order to do this.

 

  1. [Name] was referred to be assessed for ADHD with CAMHS in May 2023 and we are still waiting for an assessment with no idea how much longer the waiting times are because CAMHS do not have the resources to provide us with any further information.

 

Ringfencing and thresholds of funding

  1. Parents and carers also discussed ringfencing and thresholds of funds in schools. Some felt that SEND funding in schools was being used address shortfalls elsewhere in school funding, and that due to the threshold where schools must pay for SEND provisions, they avoid supporting SEND children.

 

  1. Even though the school were receiving [name]’s ECHP budget (£12,700 including SEN Register funding of £6,000) the school were not using this funding to meet [name] needs and would not disclose where this money was going.

 

  1. EHCP funds are meant to be ring fenced but this is not the case as we believe. My view that schools are syphoning off money that is not spent on the child to fill gaps elsewhere.

 

Other issues

  1. Parents and carers also raised some other topics, with less frequency.

 

  1. Some parents and carers discussed failures within the duty of care of the SEND system. They said that they and their children had been subject to unethical and unlawful practices from professionals, ranging from removing medical advice from EHCPs, coerced ‘off-rolling’, hiding SEND children from Ofsted inspections, and threats from attendance officers.
  2. My daughter was threatened and humiliated for having a physical disability by staff. She was left along as a vulnerable student in hallways. When this was raised, we met obstruction by the Headteacher of the Academy concerned and Local Authority. While the LA did respond to complaints and fully complete their process the school refused to engage and ignored our local MP and the LA when requested to respond on the matter. This matter is still not resolved, despite a safeguarding complaint made by professionals involved in the case being dismissed.

 

  1. Our experience was the nobody wanted to take action at the LA and it was down to us as her parents to argue why it wasn’t right to ask a child with an NHS prescribed to walk when they say they can’t. The lack of empathy for my daughter and the poor treatment she suffered was horrifying. Even now I can’t quite believe they were so cruel and dismissive of the consequences of their action.

 

  1. Our head also phoned a ASD child’s mum claiming there was to be noisy building works at the end of the week and perhaps she should stay at home. You can imagine her anger when on returning to school she found there was no works but the OFSTED inspection.

 

  1. Not everyone is choosing to home educate! We were ‘bullied’ to into deregistering our daughter and other schools made it quite clear that she wasn’t welcome when I mentioned SEND! This meant we had no other option but to home educate as our daughters school wouldn’t put an EHCP in place either!

 

  1. As a parent of a disabled child, I have been involved in this process since 2017 and have experienced some positives, but largely the experience has been exceptionally stressful, demoralizing, upsetting and has made it, at times, very difficult to work in any capacity whilst navigating the process. Over the years, I have had many unanswered calls and emails, I have been laughed at, I have been insulted by LA employees via email, I have had sections of other children’s EHCPs sent to me in error

 

  1. I’ve helped grandparents stop a local authority from unlawfully defunding their grandchild’s special school place whilst the child’s mother was on her deathbed. I’ve repeatedly witnessed specialist professionals lying to a legal tribunal, without consequence.
  2. I’ve seen administrators remove transport from a young man with a learning disability – the only way he can safely get to a place of learning where he thrives – telling their family that their policy decision will increase his independence, not eliminate it.
  3. I’ve seen a senior commissioner kneecap a family support service - depriving some of England’s poorest families of their only free support to appeal against disgraceful council decisions - and then present the fall in SEND tribunal appeals as evidence that the council is turning things around. I’ve seen a local authority roll out an automated SEND funding allocation system – apparently optimised for legal compliance – only to scrap it within months because it was allocating too much funding

 

 

 

 

Appropriate Support

  1. Failures within duty of care also extended to the severity of negative outcomes for children due to lack of appropriate support, with some parents and carers reporting that their children had been left suicidal and traumatised by their experiences.

 

  1. Our daughter is now unable to attend school because she has school trauma and school anxiety – something which doctors should be able to give sick notes for, treating children with the same respect as adults, whilst also safeguarding children (children are still being seen by medical professionals if they require sick notes for more serious absences such as anxiety). This will then trigger an attendance review with medical evidence which the school will then have to answer to – in other words schools are monitored to make sure that they are following SEND policies (to prevent anxiety and absences such as these)

 

  1. We repeatedly had to argue against solutions that were always focused on the convenience of the adults caring for her instead of my daughters abilities and needs. My daughter (who can walk a little but then will have ill effects as result) was told threatened by adults to walk because they did not want to push her. As she was scared, she complied, this then had a negative impact on her health and wellbeing and eventually become too sick to attend school.

 

Early Intervention

  1. Some parents and carers also discussed the lack of early intervention – in particular, that children had to reach a crisis point before there was any intervention, even when parents had raised concerns previously. Parents and carers noted that early interventions could be more effective, increasing independence and preventing negative outcomes, reducing the need for more intensive interventions.

 

  1. Early identification of children with SEN at pre school is crucial to not jamming up junior schools with multiple children crying out for adaptations and consideration. It was obvious my son has SEN but because he is meeting most of expected age targets his emotional and physical adjustments weren’t deemed necessary,

 

  1. Early years and early intervention is critical. I believe that the main reason my son has had such a great school experience and is now able to consider mainstream is because he was diagnosed at 4 and started school immediately in a specialist unit. I worry a lot that without many Sure Start Centres and easy access to specialists for pre-schoolers, many children start in mainstream, fail and then it takes too long to get them into the specialist system, by which time they're school refusers.

 

  1. SEN systems are not proactively addressing children’s needs. There is no action until needs are significant and flagged by educational settings. Often parent are flagging needs earlier but they are often dismissed. Needs really only start to be acknowledged once they are significant enough that they can no longer be dismissed. And then the process to get them addressed is so long and complex that there is an escalation in severity during the waiting period.

 

  1.        End this ‘wait and see’ culture in primary schools–it’s devastating and has a devastating impact on the young person’s life chances.

 

  1.        It is too late when a child is displaying ‘distressed behaviours’ (or as schools see it behavioural problems or ‘problematic behaviours’), as by then the damage to a child’s mental health has already been done (and is then difficult to reverse and rectify e.g. school trauma). This needs addressing when early signs of SEND become apparent

 

Standardisation and Consistency

  1.                    Some parents and carers also felt that there was a high level of inconsistency between schools, local authorities, and regions, based in their own experiences and those across the country. Parents and carers felt that there was an element of luck in how their children were treated, and that their should be standardisation and consistency of the system.

 

  1.        The postcode lottery needs to be tackled so that regardless of where you are in the country, the service levels and provisions available are the same, with gaps plugged as needed. We moved from London to Essex because we realised that our son’s needs could be better met in another school. This was an extreme measure but one we shouldn’t have had to take if it was a level playing field.

 

  1.        SEND support in mainstream schools is an absolute lottery from year to year and school to school. In my experience, specialist provisions such as ERBs are unable to recruit staff and retain them and therefore suffer similar issues of consistency. There is no consistency and no level that a child with SEND can expect to receive across settings, even when there is an EHCP clearly stating what is required by law.

 

Positive Outcomes

  1.                    Very few parents and carers made any positive remarks about their experience. Positive comments were all made in reference to schools (specialist and mainstream) and nurseries, and the support they provided. Multiple parents and carers said they were ‘lucky’ to have a positive experience.

 

  1.        Thankfully his current school SENCO was very helpful and we secured a place. Mainstream now feels like the right place for my son, he has made friends and is learning. He enjoys going to school.

 

  1.        [name] attended a mainstream nursery and primary school which was truly inclusive. The headteacher had a child with SEND and promoted a real culture of inclusion.

 

  1.        We are fortunate that in our area, the Primary schools are nurturing and accepting, allowing children to thrive whilst still achieving good academic results so my focus is on secondary provision.

 

September 2025