Written evidence submitted by the National Network of Parent Carers

The National Network of Parent Carer Forums (NNPCF) is the independent, national voice of parent carer forums. We are run by parent carers with lived experience.  The NNPCF is a representative organisation, consisting of up to 152 local parent carer forums at any time across England.  Parent Carer Forums are pan-disability. This means each parent carer forum (PCF) includes parent carers from a range of backgrounds with a wide range of experiences in Health, Education and Social Care as their children have a wide range of conditions. We currently have approaching 118,000 members.    

Our vision is for the best possible opportunities and futures for all children and young people with SEND and their families. 

Our mission is to deliver better outcomes for families living with special educational needs and disabilities (SEND). We aim to create a culture of participation and co-production across the education, health, social care, and the voluntary sectors. This means that we are involved in all aspects of designing, commissioning, delivering, and reviewing services as an equal partner.  We empower our members to ensure that their voices are heard at a local, regional, and national level inspire our partners by sharing good practice and knowledge.  

This submission focuses mainly on the lived experiences of parents of children and young people (CYP) with SEND focusing on:

As a membership organisation, the NNPCF has based this evidence on reaching out to our networks of Parent Carer Forums through:

Factors causing persistent and severe absence among children and young people with special educational needs and disabilities

Parent carers have told the NNPCF of several factors which impact on the attendance of CYP with SEN in schools including:

Needs not being met in schools

The NNPCF, along with OFSTED and the children’s commissioner has previously raised concerns over levels of part-time timetable, off-rolling, exclusions, and the increase in home education for CYP with SEND[1]. The NNPCF believe many of these issues are due to the needs of CYP with SEND not being met in schools due to an education system being increasingly in crisis.

Parents report concerns over having a child’s needs identified and recognised in school, delays in diagnosis meaning they can’t access support, as well as needs not being met in school.

“CAMHS assessment took 8 months to happen, now we are 1 year later finally on a waiting list.  School says until medical evidence is available, she cannot be given access to any other education.

“He is unable to cope with mainstream provision due to extreme anxiety as a result of his autistic needs not being met.

“My daughter has struggled since reception and school have made minimal effort to support the diagnosis process and to support her in school…She is now in Year 6 …She rarely makes it to schoolRecommendations have been made for various adjustments…but hardly any of these have been made and if they have there have been massive delays.  My daughter feels they don’t care and don’t understand.

There is a lack of understanding from teachers around SEND and they require further training to be able to meet needs:

“Lack of understanding by teachers, punishment as first option”

“The school are ultimately focusing on his behaviour and not his needs”

Mental Health Concerns

In the NNPCF’s recent case studies on school attendance, 66% of respondents stated mental health as to why their child was not in school on a full-time basis.  In our case study on schools not meeting needs for CYP with SEN but without EHCPs, 68% of respondents felt that their child’s needs not being met by the school had led to a mental health issue, which had subsequently negatively impacted attendance.

The NNPCF has concerns around:

CYP with SEND are more likely to achieve poorer educational outcomes than their peers or not be in education, employment or training due to their mental health needs[2]  The needs of CYP with SEND are not being met in school, creating further mental health needs, and further barriers to attendance.  Parents report “delays in realising additional needs” and that “no-one is listening to them”.  Because of this the needs of the child increase and attendance at school decreases.

“Autism is not a reason for mental health risks but there is a link and the services for autistic young people are either non-existent or too restrictive.”

Delays in Education, Health and Care Plans and tribunal decisions

Parent carers are increasingly reporting needing to attend tribunal as Local Authorities are refusing to do EHCP assessments for their CYP with SEND.  Likewise, for CYP with EHCPs already in place, when needs are not being met, and attendance dropping, they face lengthy waits for the tribunals service to either name more suitable placements or agree appropriate provisions. 

Parents report councils “dragging their heel every step of the way, refusing us everything at every turn” yet conversely conceding placement decisions “within 5 minutes of the judge appearing on screen” in tribunal hearings. The latest tribunal figures show 96%[3] of parents are successful when appealing to the courts – this is concerning as it shows parents know what their child needs, yet local authorities are delaying providing for those needs whilst waiting for tribunal hearings. 

Additionally, the NNPCF is concerned over the high number of parents having to seek decisions on placement and provision by the court and the delays in provision and placement decisions caused by this number increasing. 

One parent, whose child was out of school for two years, with no alternative provision offered, writes:

LA delayed EHCP - Assessment of needs was a joke and resulting EHCP was not fit for purpose. All independent reports indicated specialist school. LA only named ‘mainstream’ in EHCP without ever being able to name any school or AP that could actually meet needs. The LA didn’t really even bother to consult any other schools until our legal letters dropped on their desks. We went to tribunal to secure our parental choice - an autism residential specialist school which was the only school to state it could meet needs.

The NNPCF has also heard of schools refusing to initiate EHCP needs assessments further delaying the process.  One parent reported to us their child’s school had refused to initiate an EHCP assessment because of “lack of availability of staff and completing the forms”.

School Transport

The NNPCF has recently begun collecting case studies into how school transport can negatively affect attendance for CYP with SEND.  Parents report “the pick ups aren’t child friendly or SEN friendly” and that issues with transport mean the CYP is either unable to attend school, attends late, or begins school refusing due to transport issues. 

Parents also report a lack of understanding around sensory issues from transport providers.  One parent reports their child has “sensory sensitivities about car/van speakers”.  This has been exacerbated by the trauma experienced… partly related to transport issues”.  Another parent references “sensory overload issues relating to odour in the vehicle”

Parents report unnecessarily long journey times for their children.  One parent reports her child regularly experiencing travel sickness as the journey is often over 2 hours; another a significantly longer journey than is necessary:

“We’ve had a taxi provided.  I’m very grateful.  However, we live 10-15 minutes from the school.  Its taking my child 1-1.5 hours to get there due to pick-ups.  This is causing unnecessary distress and not wanting to go to school.  Surely there should be a limit for kids who cannot cope with long journeys?”

Other families report simply too many people being squeezed in a taxi.

“Without prior notice another much older 6th former was suddenly added to my son and another child's taxi shortly after the academic term began. The boys already have a chaperone. They are squeezed in, and it is extremely uncomfortable, and actually painful for both the chaperone and my son, and I'd imagine for the 6th former as well. My son now doesn't want to go to school as a result of this and is school refusing.”

A regular theme is the lack of planning and consistency, which is so vital for children who often benefit from routine.  Parent carers also raise concerns over the lateness of their child to school due to school transport being late to pick them up. 

“Lack of thought with planning.  These kids have issues and yet no notice is given.  Everyone dealing with SEND children should know that they need advanced notice for any changes in routine…what’s the point of sorting out an amazing school placement for it to all fall apart because things are dealt with completely wrong and there’s no thought when it comes to the taxi journey and the impact this then has.

How families of children and young people with special educational needs and disabilities can be better supported to improve attendance?

The NNPCF has at its heart the values of co-production and collective lived experience among others[4].  The NNPCF would like to see these values extended to the school system and the support it gives to CYP with SEND and their families. 

When asked ‘what change would you like to see for your child’ in our school transport case study one parent responded:

“A culture where parents can raise issues around transport without the fear of losing it”

At present the system is too adversarial, and parents report feeling as though they are not being listened to, and that they have to fight, often through the courts, to secure the provision or placement their child needs that will improve attendance.  Parents are also concerned about the impact fighting for provision will have on their relationships with schools and other professionals, which further inhibits attendance.

The NNPCF believes working together with parents to identify the needs of CYP and discussing any change in needs with parents will increase attendance.  The constant focus on attendance at school can make CYP with SEN feel “hounded” particularly when there is no discussion on how to improve the school experience nor whether the needs of the child are being successfully met in school.  Too many times CYP with SEND are told they cannot have the required provisions because they haven’t got a diagnosis due to long waiting list times, or are simply refused due to funding issues, yet are expected to attend an school environment that is simply not meeting their needs.

The NNPCF understands why parents can become less willing to send their child to school when school is not meeting their child’s needs and is potentially causing mental health harm.  Too many schools are refusing reasonable adjustments for behaviour policies.  Examples of this include forcing a child with sensory issues to wear a blazer they are not able to tolerate.  The adherence to the school uniform policy in this instance is more important to the school than the child’s attendance.  The child would happily attend in a jumperbut yet they are not allowedThe narrative on what school perceives are concessions to policy needs to be changed so they understand reasonable adjustments are a legal duty and not a concession.

Schools in themselves can be challenging places for CYP with sensory processing disorders, demand avoidance and general processing delays.  These can fluctuate for CYP not only throughout a school year but also throughout the day.  Schools need to be more aware of these areas for their young people with SEN and really consider how the environment can affect the child.  Whilst for some the school environment might always be overwhelming, for others attendance could be improved if schools worked with families, the CYP, with the support of other professionals, to explore these issues.  At present, many parent carers report to the NNCPF isn’t the case, so children feeling unsafe or overwhelmed in the school environment tend to see their attendance decrease.

In our attendance case studies the NNPCF asked parents what they wanted for their child.  Overwhelmingly, parents wanted their children to be happy in school and learning in school. 

“I want my child to have the same ability to access a high-quality education as my other children. I want the education system to use the research into outcomes that is out there to help them create that high quality education. I want society to enable her, rather than make her more disabled than she really is. I want her to be valued as part of a community, not in a school which has had to be forced to take her. I want her to have the support she needs to thrive without constant negativity and fighting. I want her to be able to go to after school clubs or other educational experiences with peers, allowed to choose what she wants and doesn't want to go to, rather than limited by who is prepared to take her. In short, I want her to have the same level of opportunity as her siblings.”

However, these parent carers very much reported that this is not possible in the school system at the moment, because their child’s needs are neither understood or met.

“We want nothing more to do with the school system for our child. It's a one size fits all institution that is Victorian and very out-dated and damaging and not fit for purpose. It is far from world class or world beating. Our child is now thriving at home as he can learn at his own pace and not worry about unkind peers or develop low self-esteem due to comparing himself with his peers. He can follow his strengths and interests and work on mastering more challenging things his way and in his own time. He is a very different child now he isn't in a school!”

The NNPCF believes that to improve attendance for CYP with SEND then the school system needs to be more welcoming for children with SEND and be able to meet their needs with no concerns around negative mental health due to attendance.

How families have responded to the Department of Education’s proposed reforms to improve attendance

The NNPCF is aware that current government advice such as Working together to improve school attendance[5], and Summary of responsibilities where a mental health issue is affecting attendance[6] have not gone down well in our community.  Whilst the latter does acknowledge parent carers know their child best, there is very much a feeling of school attendance is the only way to ensure good mental health.  The reality for many CYP with SEN is that it is a lack of understanding of SEN and a lack of needs being met in schools which is underpinning the mental health issues.  There is little guidance or acknowledgement around where a school environment causes mental health issues for a CYP with SEN. 

Parent carers have not responded well to the reforms to improve attendance as they believe attendance at school will negatively impact both educational and mental health outcomes. 

“At this stage, I want my child to be happy above anything else and this, not school will always come first.  His mental health has to be paramount and I will do everything possible to prevent him becoming another suicide statistic.  He has repeatedly been let down and failed by a system not fit for purpose.  He was a happy boy before he entered the school system which has systematically destroyed him.  I want him to survive and thrive and to achieve the things he wants to – it’s unlikely he’ll achieve these things through the current education system, but he has his whole life to achieve what he wants in a time that works for him as long as he survives.”

Other parents recognise that their child’s educational needs cannot be met through the current school system leaving them no option but to choose options outside of school to ensure their child receives a high quality education.  For many requesting an education other than at school package (EOTAS), or choosing to home educate, is not a path they would choose, but they feel forced to by the current state of the education system: 

This wasn't the original aim but the EOTAS package that has been agreed at tribunal. For him to succeed in education and get his GCSEs to allow him to study further education then become a marine biologist

What would the NNPCF like to see?

The NNPCF would like to see the attendance policies understand the needs of CYP with SEND, and also understand how these work in practice in the current school system.  We would like to see the education system cater well for CYP with SEND delivering a high quality education whereby CYP with SEND enjoy attending school. 

The NNPCF would be willing to share our case studies and our research into attendance and associated issues for CYP with SEND with the Education Committee and explore the challenges of attendance for CYP with SEND in more detail. 

February 2023

[1] NNPCF response to Ofsted annual report 2022

[2] Help, protection, education: Concluding the Children in Need review

[3] Tribunal Statistics Quarterly, July to September 2021

[4] NNPCF values

[5] Working together to improve school attendance

[6] Summary of responsibilities where a mental health issue is affecting attendance