Special educational needs and disabilities Contents

Appendix 1: Experiences and perspectives of individuals affected by SEND provision

Overview

The Education Select Committee put out an open call for evidence in relation to its Inquiry into special education needs and disabilities (SEND) in April 2018. It received a large volume of submissions from individuals who had experienced applying for SEND provision for a close family member or for other children/young people as part of their job. Because of the sensitive personal nature of these submissions, and the explicit request by many individuals not to publish any information that may be able to identify them, the Parliamentary Office of Science and Technology (POST) was asked to prepare a short report detailing the key issues they raised.

The Committee did not actively solicit evidence from individuals affected by SEND provision. The submissions received are therefore likely to demonstrate ‘self-selection’ or ‘volunteer’ bias, whereby they overrepresent individuals who have strong opinions or interests.668 As such, this report is intended to summarise and reflect the key perspectives of the individuals as outlined in the submissions received, and should not be interpreted as representative of all individuals affected by SEND provision. Where extracts have been used these have been anonymised to protect the privacy of the individuals.

Please note that readers may find some of the extracts distressing.

If you are in need of confidential emotional support, you can contact Samaritans 24 hours a day by calling free on 116123, or emailing jo@samaritans.org.

In total 91 submissions were reviewed:

Some of the 91 submissions described the cases of multiple children/young people. 105 children/young people were mentioned in the submissions. SEND types were not described in 14 submissions, but of the cases of SEND described by submissions:

55 individuals provided the name of their local authority in submissions. All local authorities named were in England and submissions were received from all English regions, except the North-East:

Summary

The majority of submissions followed the path of a child/young person first being diagnosed with a SEND, attending school and parents/carers/teachers subsequently applying for SEND provisions. Many submissions also considered the impact of the process of applying for SEND provision on the child/young person and their family. Therefore, this report will first cover:

Submissions also discussed two further areas, which will be covered:

36 submissions mentioned that receiving a diagnosis of SEND for a child/young person took more time than they believed was necessary. Reasons given for delays in diagnosis included schools not supporting a child being assessed, being put on long waiting lists to be assessed, having to attend multiple assessments over months/years to receive a diagnosis and receiving incorrect diagnoses. Submissions noted particular issues around getting an ASD diagnosis for girls because their presentation of symptoms differs from the ‘typical’ symptoms associated with the condition.

School experiences were discussed in 65 submissions. Particular concerns focussed on a lack of specialist staff and a lack of training for other staff (such as class teachers, head teachers and teaching assistants). Individuals recommended that training for all staff should include how to support children/young people with SEND. Bullying of children/young people with SEND was also a common theme, with 2 submissions raising the issue of sexual abuse by other students towards girls with SEND. Individuals also discussed the treatment of children/young people with SEND by staff, with suggestions that children/young people with SEND were harassed by staff, separated from their peers, and excluded from activities. Some submissions raised serious allegations of physical mistreatment by staff. Interruption to schooling for children/young people with SEND was mentioned frequently and this was often attributed to a lack of an appropriate school placement. Issues around school placement were a particular issue when a child was transitioning from nursery into primary school and from primary school into secondary school. Parents noted that these long breaks from school were detrimental to the academic achievement of children/young people with SEND.

Education, Health and Care Plans (EHCPs) were discussed in 78 submissions. Individuals raised issues about transitions from earlier statements to EHCPs, such as the EHCPs being no improvement on previous statements/assessments and confusion from local authorities and other bodies about the process of transitioning to EHCPs. Submissions also raised issues about the process EHCPs including the time taken for an EHCP to be produced, the quality of EHCPs, the school choice listed on EHCPs, and violations of the law in the EHCP process. 32 parents in submissions also noted that they made formal complaints about EHCPs, including going to tribunal, writing to their local MP, and taking their local authority to court. Cooperation between education, health and social care sectors was a common theme, with individuals noting issues including poor coordination of services around the child/young person with SEND, and a lack of communication between sectors. Child and Adolescent Mental Health Services (CAMHS) were mentioned in 28 submissions, with the main concerns being the long waiting-lists for accessing CAMHS services and CAMHS not being adequately involved with the EHCP process.

63 submissions mentioned the impact that trying to attain SEND provision for a child/young person with SEND had on the family, the financial cost to parents/carers of having children with SEND, the mental health impact on parents/carers of trying to secure SEND provision for their child, and the mental health impact on children/young people going through the EHCP process. Many submissions mentioned stress, anxiety, depression and suicide attempts associated with attempting to receive adequate SEND provision.

15 submissions mentioned young people with SEND who were aged over 18 and individuals raised concerns that there was very little post-18 support in their local area and little transition from pre-18 to post-18 support. 40 submissions discussed the financial cost of SEND provision and the way funding is distributed. These submissions focussed on the lack of budget for SEND provision in local authorities and schools and how current strategies (such as placing children in out-of-area schools and taking parents to tribunal) were unnecessarily costly. Parents also raised concerns that personal budgets for their child were not being spent appropriately and were not ringfenced.

Diagnosis of SEND

36 submissions mentioned that receiving a diagnosis of SEND for a child/young person took more time than they believed was necessary. Parents expressed concern that even SEND conditions with symptoms usually presenting before age three (such as ASD) were often not officially diagnosed for many years while their child continue to struggle without support.

Reasons given for delays in diagnosis included schools not supporting a child being assessed (6), being put on long waiting lists to be assessed (6), having to attend multiple assessments over months/years to receive a diagnosis (3), and receiving incorrect diagnoses (3):

Her primary school Head Teacher told us that she did not believe in learning difficulties and refused to commission an EP [Educational Psychologist] report nor allow the school to participate in a private EP report. As a result our daughter was undiagnosed at primary school and never received additional SEN assistance.

 

My Daughter has High Functioning Autism. I became aware of this shortly after she started school at 4 years old. She was finally diagnosed at the age of 13. It took 3 assessments over a period of 9 years to get the diagnosis, and I had to fight every step of the way to make it happen. She had never received any of the help and support that she needed and so we felt that a diagnosis would make things better.

3 submissions from parents noted that their child (ages 6–17) still had not received an official diagnosis. 7 submissions noted particular issues around getting an ASD diagnosis for girls because their presentation of symptoms differs from the ‘typical’ symptoms associated with the condition:

As her first school had an ASD resource base I would have expected her autism to be picked up sooner. But even in a school with ASD experience a girl on the autistic spectrum was an anomaly and she went under the radar of teachers and SENCOs [Special Educational Needs Coordinator].

Experiences of school for children/young adults with SEND

The majority of submissions discussed the cases of children/young people who were of school age at the time of writing. Of the 105 children/young people described in the 91 submissions:

65 submissions discussed the experiences of a child/young person attending school. These submissions focussed on school type and quality of SEND provision (30), treatment of the child/young adult at school (23), interruptions to schooling (19), and how school experience affected academic achievement (16).

School type

The type of school/college currently being attended was provided for 74 children/young people:

The lack of understanding of the needs of children/young people with SEND in mainstream schools was raised in 17 submissions. Particular concerns focussed on a lack of specialist staff, including Special Educational Needs Coordinators (SENCOs), and a lack of training for other staff (such as class teachers, head teachers and teaching assistants). 11 individuals recommended that training for all staff should include how to support children/young people with SEND:

I subsequently discovered that behavioural issues were not covered in childcare courses at the time and pre-school/nursery staff were expected to learn how to deal with such problems in the setting.


SENCO’s [sic] and teachers should have on-going training and CPD [continuous professional development] around mental health issues, but these must include the voice of young people who have experienced mental ill health and their family carers.


Like us, our daughter’s teachers were clueless about her needs and classroom behaviour management policies left her confused and in a constant state of acute anxiety and hypervigilance […] The lack of knowledge and training around autistic presentations for “high functioning” children (especially girls) meant that her teachers and SENCOs could not believe that a ‘model pupil’, who was assumed to be neuro-typical, could have such a Jekyll and Hyde personality.

Of the 7 parents who expressed dissatisfaction with the school type their child was currently attending, 3 said would prefer to send their child to a mainstream school, and 4 stated that they would prefer to send their child to a special school. 6 individuals noted that there were no appropriate special schools in their area for their child to attend.

We have now decided that we are going to move [redacted] to a special school where she can get an education geared specifically around her. She has visited the school once and it was wonderful to see the interaction between herself and a child she had never met before but with a similar condition. She looked happy and at home, whereas the school she is in at the moment, she looks reticent as soon as she gets in the playground.


Ideally, I would like him to go to a residential school for boys with Asperger’s I feel that it would give him the tools to deal with his uniqueness and help him to thrive.

Treatment at school

23 submissions mentioned the treatment of children/young people with SEND in school. 8 submissions talked about treatment by other students and 18 talked about treatment by school staff. The 8 submissions that mentioned treatment by other students all spoke about bullying of children/young people with SEND. 7 of the submissions highlighted that schools were not acknowledging or intervening when bullying was happening and 2 said their child was inaccurately identified as the bully instead of the victim. 2 submissions also raised the issue of sexual abuse by other students towards girls with SEND, 1 in a mainstream school and 1 in a special school.

She still struggles to play with others and has no real close friends at school – mostly because she plays differently and they don’t understand this, she is also sometimes the butt of bullying even at 7, especially by boys in the same class. We have broached this with one of the part time headmistresses who has reprimanded the child concerned, but it doesn’t stop it.


The bullying increased. There was one bullying incident in the playground that stands out. She was blamed as the instigator of this incident and subsequently excluded for the rest of the day. I found out from her that evening what had happened. […] Two weeks later the same thing happened again, but had escalated into a sexual assault. The school called me in to again take her home, acknowledging this time that she was the victim.

In the 18 submissions from parents that discussed the treatment of children/young people with SEND by staff, 6 suggested that their child had been bullied or harassed by staff members, 5 raised concerns that staff deliberately separated their child from their peers in mainstream schools, 4 stated that their child was not allowed to attend school activities because of their SEND, and 4 raised serious allegations of physical mistreatment by staff.

We have examples of bullying and harassment by staff including teachers, pastoral support and management. Our son was subject to data protection offences when his attendance was read out in class.


I have concerns about inclusion of [redacted] in school as I have evidences that SEN kids during lunch time eat all together in only one separate table group and not with their other groups of their peers […] SEN kids are not allowed to play in the big playground with their peers but they can play only in a restricted area, the bike area.


6 days before the school trip to Spain I was told that she was not allowed to go. They excluded her for being autistic and were unwilling to support her. They had had a whole school year to prepare and they didn’t bother. They broke her heart.


When he was permitted to attend school he was often kept in isolation in a storeroom, was prevented from socialising with the other children and had unlawful restraint used against him.


My son at times was treated like an animal and contained pushed up against the door with two adults blocking him in with their chairs (an independent witness observed this).

Interruption to schooling

36 submissions discussed the interruption to schooling for children/young people with SEND. 19 parents raised the issue of their child having long breaks (sometimes years) in education because they were too unwell to attend (10 submissions) or because an appropriate school placement could not be found (9 submissions). Issues around school placement were a particular issue when a child was transitioning from nursery into primary school and from primary school into secondary school.

We have no school start date although [redacted] was meant to start school in September 2016. This is very upsetting but further compounded by the fact that [redacted] was also not allowed to access any Early Years Education.


Now life has changed for [redacted], he lives a life without school, without friends, school being a traumatic experience , one he will never forget, never will he have that experience of going to high school. He has lost so much education that he can never get back due to the awful incompetence of LA, the systems have so let him down, a child with special needs, his parents should have been able to trust the systems and to care for him. It has changed his view on education for ever and will forever affect his future.


My daughter’s anxiety and social anxiety became so heightened that she was unable to access school for almost 2 years.

13 parents highlighted that their child was missing out on education because they were being regularly excluded from school, either because of unmanaged behaviour (7 submissions) or because of a lack of staff equipped to support their child (6 submissions). Many submissions noted that these exclusions were illegal.

Overall our son has missed over 936 days of education due to unlawful exclusions. It should be pointed out that this figure does not take into account the unrecorded absences! The misalignment of his school environment particularly throughout his primary education through lack of inclusion and integration has led to a great deal of our sons associated difficulties.


She started to shutdown regularly. Each time this happened they simply excluded her. Apparently, they did not have the staff to deal with her and she was “a health and safety risk”. I tried repeatedly to explain to them that they only needed to provide her with a quiet space to take time out for her to be able to regularly attend school, but they refused. She was being illegally excluded on a daily basis.

13 submissions mentioned children/young people with SEND refusing to attend school. Where a reason was given for the individual refusing to attend, 6 submissions stated that it was because they were unhappy at school (often because of bullying by students or perceived mistreatment by staff) and 4 noted that it was symptom of their SEND (in particular ASD and anxiety).

[Redacted] became a School refuser because he mentally could not attend due to struggling academically and with the persistent bullying from the headteacher.


He would often be late for school, usually no more than ten or fifteen minutes. We drove him to school every day. Sometimes we would be outside the gate with him in tears about going into school. The school’s only answer was to threaten detention. This served to worsen the situation, and his attendance suffered with the resulting threats of fines. I pointed out this was a disability and asked for a no cost no effort adjustment – simply stop threatening detention.

Impact on achievement

16 submissions noted that the having little specialist education, poor school experience and long breaks from schooling affected the academic achievement of children/young people with SEND. 4 submissions from parents noted that their child was highly capable but was underachieving, 4 highlighted that the low expectations of their child’s performance was limiting their achievement (such as not being allowed to sit as many GCSEs as they were capable of), 2 were concerned that their child was being entered into exams that they were not going to pass, with potential detrimental effects on their child’s self-esteem, and 2 noted that after leaving school their child’s achievements increased.

He has an IQ of 120, so he needs extra SEN support to reach his full potential.His full potential is not to have below-average spelling ability (considering how intelligent he is), as this will hold him back in all subjects. Considering his high IQ limiting the expectation for [redacted] to simply ‘meet national expectations’ is also low aspiration, being so intelligent he has the potential to exceed at all subjects, so the success of his school performance should not be limited to simply meeting national averages for his age, when his intelligence has the potential for him to exceed these.


She has got her SATS this year which the school have told us she will fail, as her parents we can’t understand why she is being put in for something that will only cause further anxiety and stress to her.

Education, Health and Care Plans (ECHPs)

78 submissions talked directly about Education, Health and Care Plans (EHCPs). 16 mentioned the transition from statements of special educational needs/Learning Disability Assessments to EHCPs, 69 raised issues about EHCPs (specifically over the time taken for them to be produced, their quality, the school choices listed on them, and legal violations by local authorities and schools) and 42 talked about cooperation between education, health and social care sectors in the EHCP process.

Transition to EHCPs

16 submissions directly talked about being transitioning from statements of special educational needs/Learning Disability Assessments to EHCPs. Individuals raised issues such as the EHCPs being no improvement on previous statements/assessments (5), confusion from local authorities and other bodies about the process of transitioning to EHCPs (5), a lack of full assessment of children/young people with SEND during the transition process (4), and concerns about the cost of undertaking the transition (2).

Transitions from statements to EHC Plans were in the main not carried out in accordance with statutory requirements. In many instances on my caseload, plans were cut and pasted versions of statements with no new evidence gathered to inform the EHCP as required.


When our son was transferred from a SEN statement to an EHCP in 2015, there was no Transfer Review meeting, no consultation with the LEA [Local Education Authorities] […] and no updated assessments were commissioned. […] The information was just copied from our son’s old SSEN [statement of special educational needs] and pasted onto the new plan and the majority of the EHCP was left blank, with little or no outcomes and the support our son would receive was not quantified or specified.

Issues with EHCPs

69 submissions raised issues about the process EHCPs. These issues centred on the time taken for an EHCP to be produced (52), the quality of EHCPs (32), the school choice listed on EHCPs (17), and violations of the law in the EHCP process (17). 32 parents in submissions also noted that they made formal complaints about EHCPs, including going to tribunal, writing to their local MP, and taking their local authority to court.

Time taken

52 submissions mentioned the amount of time taken for an EHCP to be produced. These submissions mainly focussed on two issues: the refusal by schools or local authorities to start the process of producing an EHCP (17) and the drawn-out process of an EHCP being drafted and finalised (30), with all submissions indicating this process took longer than the statutory 20 weeks. Many individuals expressed concern that the refusals and delays were attempts to limit the number of EHCPs given out and to save money. Parents also expressed concerns that their children were being unsupported while waiting for EHCPs to be issued.

I truly believe that councils play a numbers game with EHCP applications, denying the vast majority and waiting to see what comes back in the way of appeals. Given the complexity of the system and the funds required to seek professional legal help, this puts SEN provision out of the reach of most people and creates a two tier system. It is utterly shameful.


We requested that school support us in an EHCP application, as we felt that the support he was receiving was not enough, but they refused […] We applied for an EHCP but were turned down twice, as school said there was no issue and they felt school should put more in place. Unfortunately though, we felt that school just did not understand what the issues were, and would not without an assessment, so it felt like being in a catch 22 situation.


[The] EHCP was finalised on [date redacted]. A process that was meant to have taken 20 weeks had taken 101 weeks. I had spent in excess of 120 hours attending meetings, preparing for appeals, reading and replying to draft EHCPs.


Because of gross incompetence and maladministration, failure to follow proper procedures, and adhere to statutory guidelines, it was 40 weeks before, in spite of an overwhelming amount of evidence, and our son having had a statement of Special Educational Needs all through school, the decision was made not to issue an EHCP.

Quality

32 submissions raised concerns about the quality of EHCPs. The main issues highlighted were that EHCPs were poorly written (11), contained inaccuracies about the child/young person in question (9), did not give specific guidance on what SEND provision was needed (6), contained outdated information about the child/young person (4), and were not legally compliant (2).

[Local authority] SEND was in such utter chaos that they ended up sending the EHCPs out of county to be completed. They were shoddy, incorrect, provision, health needs, strengths etc were all in incorrect places. Provision was neither quantified or specified. It had to be reworked several times and in the end we had to send it to tribunal to get it to a reasonable standard.


I work in a different local authority […] When I commenced my duties I was shocked at the poor and unlawful practices that I encountered from the outset. In particular the poor quality of EHC plans, which were invariably badly written, not legally compliant and generally required substantial amendment to make them fit for the purpose of ensuring that the special needs of children and young people are correctly and fully identified and they are provided with the support they need. Other concerns included an SEN transport policy that appears to be unlawful, unlawful sections inserted into EHC Plans and the apparent lack of training and knowledge of the requirements of the Children and Families Act 2014, the SEND Regulations 2014 and the SEND Code of Practice that seems to pervade the SEN Team.


The final plan that was issued in March 2017 was vague, contained numerous errors, was clearly cut and pasted from other documents (other children’s plans possibly as my daughter changed gender at one point) and contained no provision – in fact ‘family’ was listed as provision!


Not only does my son have an EHCP with exaggerations and inaccuracies, and provision that is not provision, which would be normally delivered without the need for an EHCP, he does not have an educational placement either due to placement breakdown.

School choice

17 parents were concerned that their preferred school choice for their child was not included on their EHCP. 10 expressed concern that the school suggestions were inappropriate because they did not meet their child’s specific needs and 8 were concerned that the school choices were too far away from home (this was especially an issue for children/young people with ASD or anxiety where long journeys can be especially difficult).

Legal issues

17 submissions noted that during the process of producing EHCPs, local authorities and schools had not followed legal guidelines laid out in the Children and Families Act 2014 and the SEND Regulations 2014, including through blocking applications for EHCPs, withdrawing provision from children/young people with SEND and excluding children/young people with SEND or putting them on unlawful reduced timetables.

The (incorrect and illegal) advice that EHCPs were only appropriate for children aged 2 or over was also stated on the LA’s local offer website as late as last year, but I now see that this has been changed.


So, the result, school will get away with it. They get away with ignoring their own policy, ignoring government policy, ignoring the law. They get away with direct discrimination. They will get away with treatment of my son that has seriously impacted on his mental/ emotional well-being.


Mediation is pointless as [local authority] are now breaking the law by not having someone present at the mediation meetings who can make a decision on behalf of the panel.

Cooperation across services

42 submissions discussed the cooperation between education, health, and social care sectors. 23 submissions highlighted a lack of proper cooperation between the sectors, with particular issues including poor coordination of services around the child/young person with SEND (7), a lack of communication between sectors (5), representatives from all sectors not attending key meetings (6), and individuals falling between the gaps in sectors (2). Child and Adolescent Mental Health Services (CAMHS) were mentioned in 28 submissions, with the main concerns being the long waiting-lists for accessing CAMHS services (12) and CAMHS not being adequately involved with the EHCP process (3).

Review meetings were inadequate. There was no representative from the local authority or input from CAMHS.


There does not seem to be any mechanism for joint working with social care and health resulting in poor or no contributions to EHC Plans from these agencies, which is a statutory requirement, and lack of a joined up approach to supporting families. There is no Designated Medical Officer hence no apparent mechanism for agreeing health and social care provision to be specified in plans seems to exist. This is evident from the lack of quality in the relevant sections of EHC Plans. All of this is to the detriment of children and young people as well as making life more complicated for parents who have more to deal with than most people can imagine.


No multi-agency meeting – including any meeting between CAMHS and school took place until my daughter was unable to attend school in Year 10, at my instigation. At one point school contacted CAMHS to ask about when my daughter could return to school. This is the only time they directly contacted CAMHS. A cynical person might think that their concern was regarding attendance figures and potential prosecution rather than my daughter’s wellbeing.


The crisis in the availability of CAMHS appointments meant that each time our daughter displayed symptoms of mental illness (first aged 5) she had to wait 4, 7 and then 12 months respectively for an appointment. During this time her symptoms worsened considerably until they reached crisis point. […] The current crisis in CAMHS has catastrophic effects on children, families, schools and communities. Years of under-investment in children’s mental health services has produced a perfect storm of high demand, long waiting lists and damaged children.

Family impact

63 submissions mentioned the impact that trying to attain SEND provision for a child/young person with SEND had on the family. 10 submissions from parents noted that they had multiple children with SEND and that this increased the pressure on the family. 6 individuals discussed having adopted children with SEND (often related to early childhood trauma) and noted that these children were particularly vulnerable. Issues raised around family impact mainly focussed on the financial cost to parents/carers of having children with SEND (43), the mental health impact on parents/carers of trying to secure SEND provision for their child (29) and the mental health impact on children/young people going through the EHCP process (32).

Financial impact

43 submissions noted the financial cost to parents/carers of getting appropriate SEND provision for a child/young person. The most common costs were paying for SEND assessments for a child/young person (14), legal fees incurred for taking local authorities to tribunal or court (11), lost earnings due to caring for children not in education (7), therapies for a child/young person’s SEND (6), private tuition or education (4), and transport costs to take a child/young person to their assigned school (3).

I was told by the coordinators I had to self-fund Transport to school if I wanted [school] named as [redacted] secondary school – even though I went around all my local schools and researched most of year 5 to find the most suitable school.


We probably have spent around £45,000 to date on trying to help our son. The money spent includes private assessments by educational psychologists, speech and language therapist, occupational therapist and lawyers. This isn’t money we have sitting in a bank account – we had to remortgage our home.


We have had to sell our belongings to raise the funds needed to ensure that we could afford the private reports the judge needs to make a decision on our sons [sic] future. £1000 for a speech and language therapist report; £1000 for a report from an Occupational therapist; £2500 for an Educational Psychologist; £1000 to 1500 for them each to attend the tribunal; £3000 for solicitors to attend tribunal it just goes on!


At one point we were paying £200 a week for tuition as it was my daughter’s wish to do her GCSEs. We were fortunate to be able to pay tutor fees but feel strongly that it is wrong that we had to do so, and it did place us under great strain.


Financially, as a self employed person, I have lost a significant amount in earnings. I have had to take a substantial amount of time off work to attend meetings, prepare for SENDIST appeals, and most significantly the four months I spent at home caring for [redacted] when he was off school due to his mental health needs having become so severe. I would estimate my loss of earnings to be well in excess of £20,000 over the last 3 years.

Mental health impact on parents/carers

29 submissions mentioned the effects of securing SEND provision on parents and carers. In these submissions, the main issues raised were stress (8), depression (4), damage to intimate relationship (4), anxiety (2) job loss (2), and suicide attempts (2).

The impact of this on the whole family is equally untenable. Our daughter is extremely distressed, and my husband and I are at break point.


I had to leave my job. My employers had been sympathetic to a point, but the amount of time I was having to spend going backwards and forwards to the school meant employment was no longer an option for me.


The stress that these processes have caused to me is indescribable. I was previously a relatively healthy individual, yet over the last three years I have suffered with anxiety, had episodes of vertigo and now suffer with regular severe migraines.

Mental health impact on child/young person with SEND

32 submissions mentioned the effects of the EHCP process on the mental health of children/young people with SEND. In these submissions, the main issues raised were anxiety (11), suicidal thoughts or actions (10), depression (6), and self-harm (3).

The result of this lack of support? For my daughter it has been catastrophic. She has been out of school for 8 months and is suffering with anxiety and depression.


Things got worse and [name] began self harming, he tried to jump from heights in order to break his leg and drank washing up liquid to make himself sick to avoid school. […] [Redacted] took a huge overdose of paracetamol as he could not bear the thought of going back to school. He was hospitalised, thankfully he recovered.


At age 9, and in similar circumstances, [redacted] attempted to end his life. […] The impact of all this on our already vulnerable son is as you might imagine considerable - last month, he tried to jump out of a roof window as he couldn’t bear his life.


She fell behind in her studies, which in turn led to increased anxiety. They refused to provide school work for her to do at home, despite my repeatedly asking them and it also being stated in her EHCP. […] By her final year there her attendance was at 28%. She was a wreck. She had been refused registration for the majority of her GCSEs.


My son had a mental breakdown at school twice, once in November prior to the Annual Review, and second beginning of February. This affected his attendance.


The failures of the LA to provide an EHCP in a timely manner, and the ensuing battle to get appropriate educational provision, led to [redacted]’s mental health deteriorating significantly. He spent most of his time in his bedroom, showing signs of depression and becoming a virtual recluse.

Post-18 support

15 submissions mentioned young people with SEND who were aged over 18. The majority of these submissions discussed school experiences. 9 submissions talked specifically about post-18 support, raising concerns that there was very little post-18 support in their local area (5) and little transition from pre-18 to post-18 support (4).

[Redacted] has no post 19 provision for young adults. There is 1 independent provision in the city, where parents have to go to tribunal to gain a place at!

Distribution of funding

40 submissions discussed the financial cost of SEND provision and the way funding is distributed. 16 mentioned the cost to local authorities, focussing mainly on the perception that there was a reduced budget for SEND provision (3), that supporting children/young people with SEND in a mainstream school was very expensive (4), and that funding a school place in an independent or out-of-area school was costly (4).

There is a chronic lack of places in special schools and lack of visible strategic work to develop more places in a robust way. This results in a larger than average proportion of pupils being placed in independent and non-maintained schools, often at great cost. This in turn impacts on the schools’ budget and mainstream schools have less money to support and include pupils effectively.

14 submissions raised the issue of school finances. 10 submissions noting that schools were not able or willing to pay the £6,000 per child/young person with SEND expected by local authorities before other provisions could be provided. 10 submissions also raised issues of personal budgets for children/young people, with 5 noting that the there was no accountability of where an individual’s personal budget was being spent in a school and that the SEND provision was often shared with other students and was not ringfenced.

I am unsure if there is an issue with the level of funding overall, but my experience is that the distribution does not meet children’s needs. The biggest problems are that the money given to schools automatically for special educational needs – sometimes called “the notional 6k” because it is approximately £6,000 per pupil – is not ring-fenced for special educational needs and there are no national criteria to access the higher block of funding without an EHCP. The lack of ring-fencing for the money means it is in the school’s interests to avoid/ignore pupils with special educational needs, so that they can spend that sum in other ways. The lack of national criteria about the higher block of funding means the available help for complex needs varies by location.


Now, the EHCP is a problem, as the opinion is that the school take the lead, and they get the notional funding of £6000 to support his SEND. […] That additional funding that MY SON and the OTHER children receive should be ring-fenced for their needs and easily accessible to anyone who requests a breakdown. This is not the case. I want to see where that additional /notional funding is going. We as parents are aware that the school do not want to apply for EHCPs as they would need to provide evidence to show where they currently spend the money. But they clearly cannot and do not want to provide that fiscal evidence.


Mainstream schools have lost funding. There is no motivation to support our children, they are seen as a drain on resources and time and excluded illegally or completely. Then when parents need the support for their child the most, it is sadly lacking.


Our son has additional “top-up” money but we do not know where this is spent. He has intermittent support from a [sic] LSA in class, but we have been waiting 12 months for an educational psychologist to observe and asses him, specifically in respect of his working memory.


Our daughter’s second primary school were extremely reluctant to put in place any support under the initial £6,000 of funding to be found from school funds while she was awaiting diagnosis and her mental health was rapidly deteriorating. They disputed medical evidence and argued with mental health professionals as to the seriousness of our daughter’s presentation. When they eventually put “support” in place it was wholly inappropriate and counterproductive. […] At a time when many schools are having funds diverted away from them it is, in our opinion, SEND pupils who are the hardest hit particularly those in areas of high economic deprivation, where parents lack the financial resources and confidence to take on the legal battles necessary to get appropriate education for their SEND children.

12 submissions suggested ways that local authorities and schools could make financial savings. These were stopping spending money on legal fees to block EHCPs (7) and providing adequate support early in a child’s life to prevent more expensive interventions later on (5).

If only the Local Authorities and the Government could see how short sighted they are being, failing to invest now means more cost to the public purse overall through CAMHS, adult mental health […] all because these children and young adults were not invested in from an early age.


They should not be allowed to use huge sums of public money to employ legal representation at tribunals, when that money would be better spent on meeting the needs of children and young people with special educational needs and disabilities.


668 Rovai, A., Baker, J. and Ponton, M. (2014) Social Science Research Design and Statistics: A Practitioner’s Guide to Research Methods and SPSS Analysis. Watertree press; Dan, A., Kalof, L. and Dietz, T. (2008) Essentials of Social Research. Open University Press.




Published: 23 October 2019