Forgotten. Left behind. Overlooked. The experiences of young people with SEND and their educational transitions during the Covid-19 pandemic in 2020

Report Spring 2021 This is not an official publication of the House of Commons or the House of Lords. It has not been approved by either House or its committees.

All‑Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues.

The views expressed in this report are those of the group.

2 | Forgotten. Left-behind. Overlooked. Foreword

This is the first report of the APPG for SEND. When we formed as a group in early March 2020, we had no idea of the turmoil that we all would face just a few short weeks later as the Covid-19 pandemic hit and the country went into lockdown.

The group formed with the aim of supporting special schools and SEND provision in mainstream school and college settings. This past year has seen young people with SEND, their families and their educational settings needing support and a platform more As an APPG we don’t have the power to than ever, as the Covid-19 pandemic has make changes to policy or to systems held a magnifying glass to the existing but, as MPs, we do have influence. This problems in the SEND system. This report aims to further that influence and report serves to highlight their stories; to crystalise suggestions of how things be a platform for their voice. can be improved. And they must be improved. When we began thinking about the inquiry, the members of the APPG We thank all the organisations who were particularly keen to focus on submitted evidence to this inquiry, and how the transitions that young people we are in the privileged position to be with SEND face had been impacted by able to bring together evidence and the significant changes in education statistics from the important research provision since March 2020. they have conducted over the past year.

Moving between education settings, for But particular thanks go to the parents either a change of phase or for enhanced and young people themselves, who or different provision, is difficult for all submitted written evidence but also children, but how has this been impacted spoke at virtual oral evidence sessions by the pandemic and what has been the in front of Members of Parliament and specific experience for the children and hundreds watching online across the young people with additional needs? country.

While transitions were the focus of the We are grateful to each of you for inquiry, it is clear that the needs and sharing your experience. We hope this experiences of young people and their report and our representations can families are wide-ranging, emotional contribute to improving that experience and often desperate. Many of the during the ongoing pandemic and submissions we received were raw and beyond. anxious – they were reaching out to seek help for their child in a system that has Olivia Blake MP long needed change. Chair of the APPG for SEND

APPG for SEND Report Spring 2021 | 3 It is very sad to see that the lives and care “ of our young people is regarded as so unimportant that the services we rely on for support... were deemed non-essential “ and closed down for six months.

4 2 | APPG for SEND Report Spring 2021 Contents

Foreword ...... 3 Introduction ...... 6 Executive summary ...... 8 Key recommendations ...... 9 Overview of the written and oral responses...... 11 Hearing their voice: young people and parents in their own words ...... 32 Summary of recommendations ...... 39 Appendices ...... 51 Acknowledgments ...... 54

APPG for SEND Report Spring 2021 | 5 Introduction

Members of the APPG for SEND combination of all of these • To make recommendations to Government on its role in mitigating Olivia Blake MP Labour (Chair) and remedying the impact that Covid-19 has had upon children and Conservative Sally-Ann Hart MP young people with SEND during (Vice Chair) transition Rob Butler MP Conservative The inquiry James Daly MP Conservative The inquiry was launched at a meeting Marsha de Cordova MP Labour of the APPG for SEND on 15 July 2020. From there, it was publicised through the Jack Dromey MP Labour APPG’s website, the APPG’s mailing list and on Twitter. Liberal Tim Farron MP Democrats There was an open invitation to submit written evidence and the terms of Emma Hardy MP Labour reference for the inquiry were publicly available on the APPG’s website. At all Julian Sturdy MP Conservative stages it was emphasised that hearing directly from parents and young people James Sunderland MP Conservative was of particular importance.

An invitation to register interest to Objectives of the inquiry submit evidence at the oral evidence sessions was issued on 7 September and • To further build the evidence base there were 49 offers received. of the impact that Covid-19 has had upon young people’s mental health In each oral evidence session, the group and wellbeing during transition sought to hear from at least one young • To further build the evidence base person and one parent as they felt it of the impact that Covid-19 has had was important to hear directly of their upon learning outcomes during experiences. To facilitate the evidence transition of young people, the group contacted • To examine the impact that Covid-19 national organisations representing and has had upon children and young supporting young people with special people with SEND during transition, needs and disabilities. We are thankful to specifically in relation to the social these organisations for facilitating and and emotional wellbeing within the supporting the young people to give oral community. evidence. • To establish where the capacity and responsibility to address the impact This is primarily qualitative research, of Covid-19 lies, whether this be with with written and oral submissions to tell the Government, the sector, parents a story. We have collated quantitative and young people themselves or a research that was submitted.

6 | Forgotten. Left-behind. Overlooked. Key dates for the inquiry

Date Event

Inquiry launched at meeting of the APPG for SEND and written evidence 15 July 2020 invited. Terms of reference for the inquiry available on the APPG’s website.

Invitation to submit oral evidence and 7 September 2020 confirmation of the dates for 4 APPG meetings with oral evidence sessions.

First oral evidence session with a focus 23 September 2020 on communication and interaction.

Second oral evidence session with a 14 October 2020 focus on cognition and learning.

Third oral evidence session with a focus 11 November 2020 on social, emotional and mental health difficulties.

Deadline for submission of written 15 November 2020 evidence

Fourth oral evidence session with a 2 December 2020 focus on sensory and/or physical needs.

APPG for SEND Report Spring 2021 | 7 Executive summary

Contributors to this inquiry have used Delays in the process of assessing for powerful words to describe how young and implementing Educational and people with SEND and their families Health Care (EHC) Plans impacted have felt during the Covid-19 pandemic: on the transitions of young people forgotten, left-behind and overlooked. with SEND. This meant they started in a new setting without the provision The Covid-19 pandemic has amplified the they required or, in some cases, not problems and issues that were already attending school. Not being able to visit present in the SEND system. new settings increased the anxiety of transitions for young people with SEND. The manner and speed in which the lockdown and closure of school Changes to the school set-up and happened had a negative impact on staffing provision has caused anxiety and children and young people with SEND disruption which has been felt acutely by and their families. Many were left without children with SEND. support. Specialist resources and support that are Funding for SEND provision has been of available for young people with SEND long-term concern with local authorities, in school settings cannot be replicated school settings and families reporting in the home environment, which has an deficits in the high-needs budget. impact on their ability to learn. The impact on schools of Covid-19 related costs and losses of income has Therapists and technicians who support exacerbated this crisis. the provision for young people with SEND have in many cases not been The government guidance for special allowed on to school sites due to Covid schools and alternative provision was restrictions. frequently published later than guidance for mainstream schools. This led settings There are some positive experiences and young people with SEND to be seen from the impact of the pandemic on as, and feel like, an “afterthought”. learning which emphasises how every child has unique needs. However, they The Coronavirus Act and the reduction are positive because they mitigate in requirements of local authorities and existing issues and problems. schools to make ‘reasonable endeavours’ has had a negative impact of the support Mental health of young people with available for young people with SEND SEND, and that of their families, has and their families. There is concern that been widely impacted by the pandemic. this impact could be long-lasting. Anxiety was frequently reported.

In some cases, risk assessments were The Government and Department for used to refuse attendance in school Education did not do enough to support for young people with SEND. These children and young people with SEND assessments were often conducted during Covid-19. Our most vulnerable without the input of families or the children were failed and schools and young people themselves. families were left to pick up the pieces.

8 | Forgotten. Left-behind. Overlooked. Key recommendations

1. That the Department for Education 6. That urgent funding is given to ensures that all future guidance support the mental health of young pertaining to schools and other people with SEND as part of recovery educational settings are fully from the pandemic. That all mental cognisant of the complex range health provision is fully accessible for of needs and challenges for SEND young people with SEND and tailored children, schools, families and carers. to their needs. Critically, that such guidance is timely and considered as a priority 7. An urgent review of high-needs both during national emergencies funding is undertaken. This has been and as we emerge from the current long-called for, but the pandemic lockdown measures. has highlighted issues in the funding of provision for SEND. Funding will 2. That an urgent and time-bound be crucial in the recovery from the parliamentary review is undertaken pandemic. by government in order to assess the impact which Covid-19 has had 8. That the Secretary of State for upon children with SEND in order Education publishes the long-awaited to ensure that the support provided SEND review and commits to working as we recover from the global with the APPG SEND and allied pandemic is focussed on the most APPG’s in order to ensure that SEND vulnerable. Such a review to include Children and Young People are placed all stakeholders including children at the centre of government’s policies and young people, parents and carers and decision making. and organisations with a legitimate interest. 9. That support for children and young people with SEND must be a feature 3. That new and additional funding is of all future pandemic planning. made available in the short, medium and long-term to support SEND children and young people with the Covid-19 recovery.

4. Specific funding to be given to addressing the delays and backlog in the process of assessments for Educational and Health Care (EHC) Plans.

5. That the process of applying and assessing for EHC Plans is made simpler and more compassionate. That families should not have to fight for support for their child, even more so in a pandemic.

APPG for SEND Report Spring 2021 | 9 My input was added once the decision “ that my son had to stay home had “ already been made.

10 | APPG for SEND Report Spring 2021 Overview of the written and oral responses

Learning at school during the not given a ‘choice’, however false, initial lockdown whether to attend school or learn at home. Respondents to a survey2 by Despite children with Education Health Adoption UK “expressed frustration” that Care (EHC) plans being one of the places were not offered despite their groups able to access learning at school child meeting the criteria. This was felt during the initial lockdown, several of the to add to challenges caused by previous submissions said that this was not the disruptions to a child’s education. case. The Children’s Services Development Group (CSDG), whose members A survey1 by 1Voice, a charity that supports users of augmentive and collectively operate over 90 special alternative communication (AAC), found schools as well as providing foster care that 83% of respondents did not access and children’s homes placements for school at all between March and July. young people with complex needs, They cited that this was due to their reported that they became aware that a medical vulnerability and the increased number of non-member special schools risk they face because of their personal had to cease provision during the first care needs which meant that school felt lockdown and asked children to return too risky. Respondents to the survey to their families. In some instances, this reported feeling ‘forced to choose’ to was sadly triggered by local authority keep them at home, which left them commissioning decisions. (CSDG) without care support because the lack of testing meant the risk to life took Support stopped or reduced precedence. The Covid-19 pandemic has resulted in Ambitious about Autism also cited the educational and therapeutic support health fears due to co-occurring provided to children with SEND being conditions or vulnerable members within reduced or stopped completely. their families as a reason for pupils with EHC plans not to access learning in Ambitious about Autism reported school. that 80% of autistic young people and their parents who responded to their Careers Connects reported that even survey3 said that support they had been with specialist settings remaining open accessing before the pandemic stopped during lockdown, the attendance of or was reduced. This includes access young people has been low, with many to vital services such as speech and young people and parents choosing not language therapy, mental health support, to attend and engage in learning. and respite care. Services have had to alter, delay or remove provision entirely Some young people and families were which has increased vulnerabilities. 1 1Voice: survey completed by 12 parent-carers or the young AAC users themselves, who are aged between 8 and 27. 2 Adoption UK: survey of 674 parents/carers of care-experienced and adopted children in early April 2020 3 Ambitious about Autism: survey of over 2000 autistic children and young people and parents/carers conducted August and September 2020

APPG for SEND Report Spring 2021 | 11 organisation with an aim to provide Their submission contends that better outcomes for children and young the disadvantage faced by young people with SEN. They found that people with autism can be mitigated families had witnessed a drastic decline by exceptional support provided in in usual SEND provision from the start education, community services and of lockdown, including all areas across the perseverance of families, but the education, health care, mental health, capacity to do this has been further respite care, and social care services. reduced during the pandemic. Almost all respondents to their survey reported that their family’s special needs In oral evidence, Sense highlighted how support was “significantly impacted” by attending school is more than education. the pandemic. Attending school is often an opportunity for children to receive treatment and During an oral evidence session, Let therapies and support from additional Us Communicate, a volunteer-led, experts such as speech and language independent support group in East therapists and other healthcare London, told the inquiry that the NHS professionals. Not being able to attend providers of therapies such as speech school has impacted on the ability of therapy largely came to a halt. This is children or families to access that vital supported by the Local Government care and support. Association (LGA) during their oral evidence, who pointed out that physical The initial lockdown period from March development has also been badly 2020 meant that many families lost hit through not being able to access their access to not only respite through therapies. education, but any other respite packages of support they had in place. The Royal College of Occupational This put a huge strain on many families, Therapists (RCOT) reported that face- which still continues to impact on them. to-face consultations were limited (Sense) during the initial phase of the pandemic in March 2020. Again, families with 1Voice found 58% of respondents to vulnerable children are reluctant to their survey had no care support at receive people into their homes or all between March and July. Only one visit a healthcare setting even when it respondent had the same hours of is permitted. This has made it difficult support as usual. 22% of those who did for occupational therapists to address continue to get some care had ‘a lot the needs of young people with SEND, less than usual.’ Without additional care particularly physical needs that cannot support, these young people depended be met through virtual consultations, on their parents for everything. The for example reviewing and adjusting complexity of their physical disabilities specialist seating or hand splints to means that they need support with accommodate a child’s growth. feeding, changing, toileting and facilitation for interaction in online They also described how social environments: “The levels of physical distancing regulations have impacted and emotional stress these youngsters the number of spaces that meet the and their families have reported is requirements for occupational therapists enormous”. (1Voice) to conduct confidential conversations with young people, parents/carers and SEN Talk is a London-based non-profit educators. Furthermore, a number of

12 | Forgotten. Left-behind. Overlooked. children’s occupational therapists were survey of 4,000 families that seven redeployed to adult services at the start in ten parents said their child had of the pandemic. Around one third of the difficulty understanding or completing 1500 occupational therapist respondents schoolwork, and around half said that to an RCOT survey4 were deployed their child’s academic progress suffered. elsewhere and others were unable to work because they were shielding or Sense told the inquiry that parents had unwell. reported that they have had no contact at all from their child’s school whilst A parent who gave oral evidence to the others have had work sent home from inquiry said: “He needs physio, he needs school that they’re unable to access. orthotics, he needs a dentist, he needs speech and language therapy, yet it isn’t In response to unsatisfactory support there. It’s gone. He is not prepared to from their mainstream primary school, transition, he hasn’t the tools he needs to a parent/carer of a child with Autism transition.” Spectrum Condition (ASD/C), Attention Deficit Disorder (ADHD/ADD), and A survey by Family Fund found that 62% Pathological Demand Avoidance (PDA), of families said formal support available replied: “School over Zoom just doesn’t for their disabled or seriously ill children provide the required support for children has decreased due to the Covid-19 with complex needs who already outbreak. struggle with communication and social interaction.” (SENTalk) “Through our helplines, Tribunal Support Service and training we have heard that 54% of respondents to the 1Voice children and young people with SEND survey did not have work provided in an did not receive adequate support upon accessible format. “A picture emerges their transition to remote or a different from the responses of worksheets and kind of education when educational web links being sent home which the settings closed in March.” (IPSEA) learners’ physical disabilities meant they could not access. The work ‘wasn’t Accessibility of at home adjusted at all’ and was ‘not in grid or learning and differentiation clicker.’ The online lessons were difficult for AAC users to participate in.” (1Voice) National Deaf Children’s Society (NDCS) reported that remote teaching may not In their submission, IPSEA concurred be accessible to some deaf children that children and young people with unless additional communication support SEND found it difficult or were unable to is provided such as remote speech- access education remotely, either online to-text or sign language interpreters. or on paper. This was because the work “We believe it’s unacceptable that set was not appropriately differentiated, accessibility continues to be an was provided using software they could afterthought and would like to see a not access and/or they did not receive much stronger lead and encouragement special educational provision required from the Department in this area.” by their SEN that they would have had (National Deaf Children’s Society) at their setting (e.g. the support of trained teaching assistant 1:1 under the National Autistic Society found in a supervision of a qualified teacher). 4 RCOT: survey of 1500 occupational therapists (including 175 occupational therapists working with children and young people) in July 2020

APPG for SEND Report Spring 2021 | 13 Dinah, a deaf young person, gave oral A parent told the inquiry, via an oral evidence to the inquiry and spoke of the evidence session, that: “We don’t, as need to explain to new teachers what parents, have access to that specialist support you require, such as reminding software. That’s all in schools, with them to use the radio aid or to take off speech and language therapists, it’s with their masks: “That takes quite a lot of the people who make the software.” confidence, it can sometimes be a bit embarrassing as well.” The National Autistic Society told how children who usually receive SEN Special Needs Jungle, a volunteer Support in school “fell into a gap in parent-led blog for parents of children provision” during lockdown and were with SEND, surveyed over 1,000 parents left without any additional support at all. and carers in June 2020. Only 18% of These children were mostly at home, and respondents said that their child’s school parents reported that they were unable had delivered enough SEND support to to provide the specialist support their enable their child to complete their work, child received at school to enable them with appropriate differentiation identified to learn. as a major issue. “A significant minority” said they had received no work at all. Costs for parents

Resources at home 1Voice told how parents had reported buying spin bikes, hot tubs and ijoy A key part of in-school learning are riders out of “desperation” to keep the resources available to children with their young people as fit and healthy as additional needs which support and possible. Parents reported ‘huge delays’ enable their learning. While learning at for new equipment, such as leg gaiters, home, there were noticeable gaps in to enable vital physical therapy at home. access to these important resources. A lack of space, equipment and support NDCS reported that some deaf children from NHS services means the physical were told that they can’t take their radio needs of these learners have not been aids hearing technology home from met during the pandemic, except for school at this time, even though this through the additional efforts of families could support home learning. who have the resources to do this.

Sense reported that, for many children Changes to routines with complex disabilities, remote solutions were not appropriate and Both Ambitious about Autism and the the impact of this was increased social National Autistic Society highlighted the isolation for those young people. impact that the sudden changes caused Furthermore, many of the educational by the pandemic had on children and resources and specialist support children young people with autism. The National with MSI need cannot be replicated Autistic Society described the impact as in the home. Accessible resources like “disproportionate and devastating” due Braille, Easy Read and Picture Exchange to the intense anxiety that is felt around Communication (PEC) symbol systems unexpected change. aren’t affordable or available to families at home to continue learning and Social aspects of school outcomes. (Sense)

14 | Forgotten. Left-behind. Overlooked. Dr Shepherd and Dr Hancock of the Other activities around University of Sussex found in their education survey of 502 carers that social aspects of education (interactions Adoption UK reported that Covid-19 and communication) were the most restrictions have impacted the type of affected by the learning at home during activities that were allowed in schools, lockdown. Things like taking turns, which has resulted in an increase in sharing, group activities and diverse challenging behaviour. They give the conversations were not possible at example of one child in a specialist home. secondary social, emotional and mental health (SEMH) setting, whose parent Royal College of Nursing highlighted said their behaviour had become more the key role that being in school plays in challenging as the schooling is now more helping young people with SEND learn “sedentary” and “academic” than before social skills, self-value and confidence. lockdown. They will likely be unable to use technology to get in touch with friends and have limited social opportunities as Communication between a result. schools and parents

Regional variations Let Us Communicate spoke in an oral evidence session about the need for The differences in the experience of better communication with parents: young people with SEND between “we’re often left in the dark”. regions and areas was cited as a concern by several contributors. National Deaf Adoption UK reported that where Children’s Society noted that online communications between the setting learning materials, transition support, and home were frequent and effective early intervention support and recovery during the lockdown, the transition back plans were available but “not consistently to the setting has been more effectively across England”. In particular, there were managed and better supported. gaps around the support for language and communication. Government guidance

Sense also spoke of a lack of consistency, Numerous contributors to this inquiry with many Local Authority Sensory cited the guidance produced by Services sending equipment such as government on SEND provision as an radio aids home to children who were issue, both in terms of its content as well shielding. They raised a concern that as the manner and timing in which it insurance coverage may be a barrier to was produced. A recurring theme is that this equipment being taken home. They SEND pupils and their needs have been described a “postcode lottery” of SEND an “afterthought”5 . provision and urged the government to revise its approach to local solutions The changing guidance from and create a guidance framework for government has had an impact on risk assessment that is appropriate, young people with SEND, their families, particularly for young people who are and schools, particularly where routine shielding. is needed to support the young person. Ambitious about Autism said 5 Submissions from RCOT, PLASN and NAHT

APPG for SEND Report Spring 2021 | 15

We’ve gone from 24/7 residential Monday to Friday term-time and PA support at “ weekends and holidays, to absolutely nothing and home full-time. I’m a single “parent and feeling the strain physically, emotionally, and financially. Nothing is being done to support us.

16 | APPG“Forgotten, for SEND left-behind, Report Springoverlooked” 2021 communicating clearly with children and their parents has been difficult NAHT cited the example that school with the complexity and ever-changing transport guidance, required by pupils nature of Government guidance. They and parents/families prior to the also highlight that this guidance has summer recess in order to establish been focussed on mainstream schools expectations for successful September and colleges. They said many parents 2020 educational transitions, was and children have felt “forgotten and not published until August - well left-behind” in decision-making about after the end of the summer term - education. creating wholly avoidable problems for local authorities and providers in National Deaf Children’s Society pointed communicating arrangements with out that the Department for Education families. failed to consult with organisations representing children with sensory The content of DfE guidance is also an impairments when seeking out feedback issue, suggested NAHT. Speaking about on draft guidance. the updated guidance provided at the start of November 2020, NAHT said: PLASN contended that decision making ”there was a sense that, once again, it appeared to be centred around the was broadly mainstream predicated needs of pupils in mainstream schools guidance that did not adequately and reported a consensus amongst their consider special school and specialist members that clearer, setting-specific setting needs in catering for pupils with guidance was needed: “special schools SEND.” needed to be prioritised by the UK Government rather than treated as an NAHT said the consequences of delayed after-thought.” guidance suggests to SEND children, their families and schools that they IPSEA highlighted that the concerns are “an afterthought”. It also delays of parents of children and young the ability of settings to meet their people who live with someone whose pupils’ needs and puts the schools and health is at a high risk if they contract children at a disadvantage compared to Covid-19 regarding their return to mainstream schools when purchasing educational settings were not addressed. finite resources such as PPE. Department for Education guidance on how settings should approach situations The Royal College of Occupational like this was initially unclear and not Therapists (RCOT) referred to the updated in a timely manner. (IPSEA) inconsistencies between guidance from the DfE and NHS England which The timing of SEND specific guidance has caused problems for allied health was also reported as an issue by NAHT. professionals employed by the NHS but 86% of respondents to an NAHT survey also working in schools. RCOT said it in June 20206 did not agree that has been “confusing and, in some cases Department for Education guidance had conflicting”. Timing is again raised by been published in a timely manner and RCOT, who said occupational therapists 73% of respondents felt that the delays have been required to read and interpret in producing appropriate DfE guidance information from both the DfE and NHS had affected their setting’s ability to and implement guidance often with little make effective planning decisions. notice.

6 NAHT survey of over 570 SEND school leaders, June 2020

APPG for SEND Report Spring 2021 | 17 Sense described the guidance around and Health Care (EHC) Plan, they were PPE for personal care support as deemed to have met this duty if they “insufficient”, which has resulted in many had used “reasonable endeavours” to young people with complex needs who secure the provision. This temporary require such care being unable to return amendment was in place between 1 May to school. They commented that it had and 31 July 2020. taken the DfE and Public Health England “a significant proportion of time” to National Deaf Children’s Society review the guidance. expressed a concern that some families were being given messages implying An oral submission from Great Minds that their EHC plan can be ‘ignored’. Together, a multidisciplinary wraparound team supporting families, schools and Sense reported that this change had services, described the guidance as a significant impact on many of the “chaotic and not sustainable for our planning processes required to support schools’ professionals or parents and an effective transition back to school for carers”. children and young people with SEND.

Government guidance recommended Sense described the short and long the use of class or year group bubbles term impact of this amendment as to help prevent the spread of Covid-19. ‘significant’ for young people with SEND However, as Pan London Autism School and their families. They were left without Network (PLASN) identified, this simply vital care and support, and home did not take into account the unique learning tasks were not differentiated or context of special schools, where pupils accessible for their needs. Furthermore, from different classes will be mixing on Sense reported the impact it has had school transport. on the schools, local authorities and clinical commissioning groups to plan Special Needs Jungle said that a large appropriately for these children to return number of parents who commented to school safely. Many of the children during their June 2020 survey believed that Sense supports have not had all the that government had “abandoned or support they are entitled to in their plan neglected” children and young people reinstated, even beyond the temporary with SEND when responding to the suspension. pandemic. National Autistic Society also expressed Coronavirus Act and concern over the long-lasting effects of ‘reasonable endeavours’ this temporary suspension.

The emergency powers provided to the Both National Autistic Society and IPSEA government by the Coronavirus Act reported that some local authorities were 2020 “watered down” the legislative retrospectively applying the Amendment entitlements to support for children Regulations to decisions and steps they and young people with SEND. Section had been legally required to take before 42 of the Children and Family Act 2014 the amendment came into force on 1 was amended so that rather than local May. The Amendment Regulation caused authorities having a duty to deliver delays to the EHC plans and meant that the special educational and healthcare young people were unable to participate provision set out in a child’s Education fully in decisions about their transitions to different phases and schools. (IPSEA)

18 | Forgotten. Left-behind. Overlooked. Blanket policies of Covid, meaning I couldn’t attend the meetings that normally would happen so Polly Sweeney, a lawyer specialising in I had a few that were online.” education, community care, healthcare and medical treatment, told the inquiry Polly Sweeney also reported a backlog via oral evidence that she was seeing of EHC plan assessments and decisions too many cases where schools are during oral evidence to the inquiry. She applying blanket policies which are claimed that one local authority was still having discriminatory effects. She gave dealing with assessments from 11 months an example of generic letters being earlier, emphasising that EHC plans were sent for children to sign up to Covid-19 “vital” in ensuring educational transitions behavioural policies that young people can be supported and successful. She with SEND would not be able to adhere noted that delays and backlogs were a to. problem before the pandemic, but the relaxation of timescales would inevitably Delays in the EHCP process make the backlog worse. She said that the guidance from government about how to deal with this backlog was not 1Voice reported that the Covid-19 sufficient despite it being an inevitable pandemic has caused delays to EHC plan consequence. processes which have had a detrimental effect on children’s education, including The need for early intervention was also delays in finalising college places leading highlighted by Down Syndrome charity in one case to a young person becoming Making Chromosomes Count. They NEET (Not in Education, Employment or described the information provided to Training). families who have a child with Down Syndrome as “sparse”, with many National Deaf Children’s Society raised families not realising they can apply concerns about the cancellation of for EHC plan assessment before pre- routine audiology appointments, which school age. Making Chromosomes Count can delay diagnosis and intervention, also contended that many families are which will impact on language and “actively discouraged” from applying, communication development later in with local authorities claiming that the life. They said that there needs to be child is too young. an urgent action plan to address this backlog and emergency funding should be provided. Transitions

Dinah, a deaf young person, told the The inability of young people with SEND inquiry in oral evidence of her experience to visit new settings due to their closures of applying for an EHC plan. She impacted heavily on their transitions. described is as “a stressful, draining Royal College of Occupational Therapists and time-consuming process”. She said this was particularly difficult for highlighted the problems with not being young people with physical and sensory able to have face-to-face meetings needs, and those who find change during the process: “It felt as if a bunch difficult. The consequence has been of strangers were deciding my future a delay in implementing tools and based on what they knew about me on a strategies to support their needs, and piece of paper. The application process taking longer to settle in. was made a bit more difficult because

APPG for SEND Report Spring 2021 | 19 Adoption UK reported that, due to the them. pandemic, barriers have been created to effective transitions in education for Transitions post-16 young people with SEND. Some were transitioning with no plan in place, and Sense highlighted the case of one young vital information had not been shared, person they were supporting, who was in meaning that, in some cases, EHC Plans the middle of transition to college, which were not in place. had the added issue of moving between local authorities for provision. Support A parent of an AAC user told the inquiry had been available at his current school via oral evidence how the change in staff but had been stopped at the last minute. teams impacts her daughter: “Her TA’s, Covid-19 had caused delays in sending they’re not being trained yet to properly the required paperwork and preparing support her. And this just exacerbates for transition, which had resulted in the a problem that happens anyway with new college being no longer able to transition for children like my daughter, support him. Sense expressed concern where each year when you change over for the long-term impact on this young to a new staff team, it’s almost like they person if the situation could not be go back to square one, re-training all the resolved. TAs, unless you’re lucky enough to have continuity, which is quite rare. When it’s Children’s Services Development left to September that child is constantly Group (CSDG), a coalition of leading losing probably about half a term every independent providers of care and year. Obviously as you say Covid has specialist education services, reported been a huge impact, but it does happen issues with transitions planning during again and again anyway.” the pandemic for young people scheduled to leave their specialist In oral evidence to the inquiry, Let Us provision, which created delays in their Communicate spoke of young people move into adult services. They told being “lost in the system” and “still how their members had experienced waiting in transition”. This was due to pressure from local authorities to extend ECH Plans not being drafted in time and placements for young people up to age not able to progress because in-person 21, without recourse to the resources assessments were not possible. This required or consideration as to whether resulted in some children not moving on this would really be in the best interests to their secondary school placements in of the young person. A consequence September. of this approach is that it creates placement blockages, limiting future Royal College of Nursing described access to specialist education and care how the transition from primary to placements for younger children. secondary school will have been negatively impacted by not being able to In 2020, CSDG published its report have transition days and typical end of ‘Destination Unknown: improving school/leaving activities. Similarly, they transitions for care leavers and young say if young people are leaving school people with SEND’7. This found that a for adult services or employment then lack of consistent and effective transition the lack of transition is going to make support for young people when they this life event a lot more difficult for reach 18 and leave care and specialist

7 Destination Unknown: improving transitions for care leavers and young people with SEND http://www.csdg.org. uk/2020/02/26/destination-unknown-improving-transitions-for-care-leavers-and-young-people-with-send/ (accessed March

20 | Forgotten. Left-behind. Overlooked. education is resulting in unacceptable following the first lockdown caused life outcomes. CSDG’s own members anxiety and concern for many young have experienced instances where people with SEND and their families. support is removed at inappropriate Ambitious about Autism said, via oral times, making it very difficult for a young evidence to the group, that 70% of person to complete their education or autistic children and young people and be appropriately supported to live as their parents and carers have lost sleep independently as possible in an adult worrying about their return to education social care setting. and just over half weren’t confident that the support would be in place to IPSEA told how intended educational meet their needs when they return to transitions were disrupted by local education. authorities and settings’ responses to the pandemic, leaving children and young The provision required by young people people without suitable placements for with SEND was often not in place for longer. their return to school in September 2020. IPSEA described it as “lacking” “My disabled son has missed out on and reported that they had spoken his final year at school. This has had a to parents who said there was “no negative effect on his mental well-being. reintegration plan” and that support He has had no transition into college, and specified in the EHC plan would not be I’m worried how he is going to cope”. provided, including 1:1 support. (Parent via Family Fund submission) Polly Sweeney also spoke of cases where Career Connects found that some young the provision outlined in EHC Plans was people who were offered apprenticeship not being delivered on the return to opportunities and supported internship school, particularly 1:1 assistance and placements were told they were no therapeutic support. She also highlighted longer available due to the Covid-19 that there was a lack of targeted catch- pandemic. Therefore, they have been left up, which many pupils with SEND would without a post-16 option. This has meant need if they had been unable to access that those young people have suffered online learning while at home. setbacks and this has again affected their mental health and wellbeing. “Going back to college, they didn’t have the ability to support me, so I couldn’t go National Deaf Children’s Society reported back. If I had an Education Health Care how the Treasury had announced Plan they would have put things in place” a package of measures to support – a young person with cerebral palsy and young jobseekers which include a new learning difficulties via oral evidence. Kickstart scheme for work placements, an expansion of traineeships and more In written evidence, IPSEA gave an careers advisors. They emphasised the example of a child who was meant to importance that deaf children were reintegrate into secondary school after considered in such initiatives. being home-educated for a few years. They needed the special educational Return to school post-first provision in their EHC plan to be implemented to facilitate a successful lockdown transition. This did not happen “due to Covid restrictions at school”. They The prospect of a return to school needed a toilet pass but were told

APPG for SEND Report Spring 2021 | 21

We have been very isolated. The initial lockdown was very confusing to our “ children and now restrictions have been eased and they are expected to return to school without any support regarding “transition etc. Their worlds were already very confusing before coronavirus and are even more so now.

22 | “Forgotten, left-behind, overlooked” they could not have one due to current example of one pupil whose anxiety and circumstances. school refusal started getting worse again because of this. External specialists on school sites Alternative support for transitions Covid-19 restrictions and risk assessments preventing external visitors Many mainstream and specialist schools into school is an issue which has been did their best to support and aid cited by several organisations and transitions between settings during the individuals who contributed. pandemic, with many offering virtual tours and support in lieu of the children Sense found that whilst some children and young people being able to visit are now back at school, many settings and spend time there. However, as with were not allowing external professionals online learning, there were accessibility back in, resulting in children not having issues for children and young people access to important therapies. Sense with SEND. also gave an example of a school refusing to allow a specialist technician Royal College of Occupational Therapists on site to fix a radio aid. They noted that reported that some young people with there was guidance which said this was SEND found virtual tours stressful and unacceptable but that there was little may not have been able to generalize accountability. information they were given to a “real- life context”. Some young people were Schools being closed meant that unable to access virtual tours due to occupational therapists could not review lack of access to the internet, limited accessibility and classroom settings technical skills within their household ahead of transitions in September. and anxiety about using unfamiliar “Even when schools reopened to more technology. The transitions of young students from June 2020, many were people were affected by not having the reluctant to receive visitors including face-to-face meetings, as it was more occupational therapists.” The result of difficult for occupational therapists this is that children returned to school to build up a relationship with young in September without the equipment people during virtual visits and to or support they required being in place. identify students/families who would (RCOT) benefit from additional support.

A parent of a child who uses AAC A parent via oral submission spoke of told the inquiry via oral evidence that how her daughter could not go and visit “none of those staff have been able to university as a result of lockdown: “She be properly trained in using her AAC had to move into accommodation having because as well as other complications, not been able to see it - we did see a they haven’t wanted external therapists virtual tour, fortunately there was one to go in. And so her TAs are not being online - but it’s not quite the same as trained yet to properly support her.” getting a feel for it as well.”

IPSEA highlighted that parents were also There were some positives to a virtual not allowed on site to help their children transition identified by Essex Family transition back to school. They cite the Forum. They spoke of students from the

APPG for SEND Report Spring 2021 | 23 Multi-Schools Council who said they had as caring for a child or young person felt very well supported by transition with SEND in England, found: from primary to secondary school. A benefit included that virtual tours were • 75% of respondents said that their available to watch - and, if desired, re- child had not had a risk assessment, watch - from home with family and or they did not know if one had been friends. conducted. • Of the parents whose children had A head teacher of a special school in undergone a risk assessment, only 9% London gave oral evidence as to the way said they had been fully involved. his school had adapted their transition • Even if they knew a risk assessment process and identified some positives: had taken place, most parents were “Because I couldn’t risk Covid mixing - not involved at all. we’re a Covid-secure school - we invited • In their comments a number families in on the Saturday and, to be of parents indicated that a risk honest, it was so good because we could assessment had been used to actively actually focus our time on the families.” dissuade them from sending their He spoke about how they had arranged child in or to prevent their child’s for autistic young people to have special attendance. visits where they focussed on important things to make them feel settled, such Children and young people with as where to go and where to hang their education, health and care (EHC) plans coat. were at home experiencing the above difficulties because their setting refused Masks attendance. (Special Needs Jungle)

For children who had been able to be IPSEA were also told of settings refusing in school or return to school, Sense attendance based on risk assessments reported that the wearing of masks with little or no input from parents. had made it difficult for some children Settings were also unlawfully excluding to participate. Children who rely on children in response to a perceived lipreading have had their ability to inability to meet their needs “attempting understand their teachers and other to rely on Covid-19 as a reason to justify pupils affected. this”. IPSEA also reported parents’ concerns that risk assessments were A deaf young person told the inquiry done without their knowledge and many during oral evidence that: “Socially it were not aware of the requirements for can be quite isolating with the whole them to be done. Furthermore, they cite masks thing because at the moment my several examples where local authorities school has rules that in communal places have acted unlawfully in putting EHC everyone needs to wear masks… I’m Plan assessments on hold due to the quite heavily reliant on lipreading.” pandemic.

Risk assessments and refusing Sense also report that risk assessments were also often conducted without attendance input from families and they were used “sporadically”. Had there been A survey by Special Needs Jungle, some opportunity to discuss and work conducted in June 2020, of more than together, then perhaps those children 1,000 families who identified themselves could have returned to school rather

24 | Forgotten. Left-behind. Overlooked. than “blanket decisions” being made attested that there were several factors about their needs. (Sense via oral affecting whether children could return evidence) to school, such as the school refusing them attendance, the pupil’s anxiety, The lack of a proper framework for illegal exclusion, and no suitable space in completing the risk assessments meant school for a medical device. “I’m almost that there was regional interpretation certain that nobody knows this actual and variation. Sense expressed concerns exact figure at all, as was the case even that risk assessments were being used prior to the recent pandemic”. (Emma as a means of keeping children with Mander, Great Minds Together, via oral additional needs at home, rather than evidence) making reasonable adjustments at school, which has meant some children Sense were concerned about the impact being unable to return. that not being at school would have on the young person’s support plan, as Aerosol Generating Procedures assessments would be missed if they were at home. This has particularly Royal College of Nursing highlighted an impacted young people who were area of risk in specialist school settings transitioning to new settings, as they where children in schools require aerosol were not able to start in September as generating procedures (AGPs) such as planned due to the required support not oral suction, tracheal suction or long being in place. term ventilation. These pupils are only able to access school if the school Children who are shielding environment has adequate provision, the staff have been ‘FIT’ tested, and the risk Sense also raised concerns about assessment supports their safety and children who were having to shield at that of their fellow class members. RCN home because of complex medical members reported that the guidance needs and being extremely clinically from Public Health England was very vulnerable. They are missing out on difficult for the school to adhere to. important therapies, but also achieving (RCN) person-centred outcomes, such as learning independent living skills, if they Sense also expressed concern for pupils are having to shield for a long period of who require AGPs, describing their time, Sense contended that they must be return to school as “challenging”, with given the support to continue achieving many unable to return in September and those outcomes at home. missing further learning. Sense contends that the “watering down” of rights and Sense also raised an issue about the entitlements to support under Section guidance on shielding not appropriately 42 of the Children and Families Act, have recognising the needs of those children led to a lack of forward planning in terms who were required to shield. Many of identifying spaces to carry out AGPs families have received no risk assessment in schools. or alternative support from their local authority throughout the Spring Pupils unable to return to lockdown. school

In oral evidence, Great Minds Together

APPG for SEND Report Spring 2021 | 25 Funding settings due to the exceptional costs they are incurring as a result of the The issue of funding was raised by the pandemic. However, they assert that this Local Government Association (LGA) will likely be even more acute in SEND in both their written and oral evidence. and alternative provision settings. This They said that councils are continuing may lead to schools not being able to to report the pressures on the High maintain acceptable levels of safety. Needs funding block as “one of the most serious financial challenges” they “This does not appear to be due to any face. They expressed concern that local lack of will or commitment from pupils, authorities would be unable to meet parents/families nor schools/settings - their statutory duties to support children more frequently it appears to be due to a with SEND without additional funding deficit in each sector related to capacity, being made available. inadequate resource, a paucity of mechanisms for effective collaboration “If councils do not receive enough and limited understanding between funding to cover the high cost of SEND sectors as to what is required for all they will not have the resources to our pupils to maintain their wellbeing, allocate extra funding to highly inclusive engagement, progress and learning – schools that take higher than average this has become particularly clear during numbers of pupils with additional needs”. Covid-19 (NAHT)” (LGA, oral submission) Local councils Children’s Services Development Group (CSDG) noticed that the pandemic Local Government Association (LGA) resulted in commissioning decisions reported a positive relationship between being made on the basis of short- schools and local authorities which has term funding concerns. They gave the flourished during Covid-19. They provide example of placements being ended the example of councils supporting sooner than planned “to mitigate funding schools to interpret the guidance from obligations for young people with the DfE, and that it is important that the SEND”. This meant that children had to positive relationships continue. return home unexpectedly which meant there wasn’t time for a transition to be LGA also referenced the government’s planned and support put in place. SEND review and, from that, there needs to be a clear accountability network CSDG also explained that High Needs created and flexibility around funding. funding has been a developing problem They said that the pandemic has shown over many years and is something the challenges that councils, schools and that has been “exacerbated” by the health care providers currently have in pandemic. This has led to regional fulfilling their duties to support children variations based on access to services, with SEND. available funding and “placement decisions typically now being based on Agencies working together short-term cost considerations, rather than the full needs of the child”. Parents painted a picture of the difficulties they encounter when trying NAHT referenced the funding issues to achieve the support their children’s that are being faced by all education needs. One parent, in oral evidence,

26 | Forgotten. Left-behind. Overlooked. described her family’s experience of Council are now reporting that, for post-19 transitions as: some children with additional needs, coming back to school in a ‘Covid-Safe’ “… being caught in the middle of a manner and the additional structure maelstrom as Education, Social Care that this provides is a positive – for and Health argue over who funds what. example having slightly more space in The system is confused, I’m confused, the classroom and quieter playtimes with our families are confused, but most of less children around them. all so are our young people, as many are still left not knowing what they’re doing Another benefit of the new Covid and where they’re going. It seems that regulations in schools was reported by everything has ground to a halt. Where IPSEA. A secondary pupil found staying is the joint funding? Why are we having with the same group and in the same arguments between three different room beneficial, rather than having to departments?” (Parent via oral evidence) move around the school.

Another parent in oral evidence spoke NAHT also described the Initial lockdown of the barriers they face with what is as providing some opportunity for classed as education for the Disabled certain children and young people with Students’ Allowance (DSA) and what is SEMH to experience a more settled classed as education for the EHC Plan. time and actually enjoy periods of less She told how the CCG wouldn’t offer the anxiety at home. This was more so at therapeutic support that was previously the beginning of the initial March 2020 provided through the EHC Plan, as it lockdown. However, over time this initial is not classed as educational when it positive impact did appear to reduce. comes to DSA: “there’s this big gaping hole that you go from one to the other This is supported by Royal College of and there’s no consistency”. Occupational Therapists who said that parents/carers of young people with Exams SEND reported that being away from the pressure and demands of school National Deaf Children’s Society spoke benefitted their well-being. of the worry young people had over the exams being teacher-assessed or Special Needs Jungle found in their based on their mock exams as both survey that whilst 37% of parents can put children with disabilities at responded that their child’s anxiety levels a disadvantage. If the performance had increased under lockdown, 38% said situation, such as a mock exam, was their child’s anxiety levels had decreased. not fully accessible or their teacher has Some parents reported that freedom to limited expectation for them due to their learn in different ways away from the disability, then there is a risk of future school environment had made their child disadvantage for this cohort. less anxious and better able to learn.

Positives from the situation Some young people shared with Essex There are some positives from the Family Forum that they enjoyed doing impact of Covid-19 on learning. Essex schoolwork from home because it meant County Council said the children and they did not experience any bullying. young people from the Multi-Schools For other children and young people, the time away from school settings was

APPG for SEND Report Spring 2021 | 27 a positive, with some parents reporting followed on to university because we that their child’s anxiety level decreased know it works really well when the notes out of school. are taken and can be seen at the same time”. (Parent via oral submission) IPSEA reported that parents said their children who were struggling to attend Exacerbating existing problems school before the closures found being at home easier. They believe that this The most common theme throughout is likely to reflect inadequacies in their the submissions received by this inquiry, provision before the pandemic rather was that the SEND system was already than there being a benefit to home problematic, and that Covid-19 only learning. exacerbated existing problems for young people with SEND and their families. One parent said via the Adoption UK submission: “She is a completely “The pandemic has hit a statutory different child – relaxed on the whole, system that was already in crisis and healthier, more able to regulate, able Covid-19 has only further intensified the to accept consequences for behaviour, issues which children, young people and playing board games, having a healthier families are facing.” – Polly Sweeney, relationship with her sister and dad. lawyer specialising in education She has embraced home learning and is enjoying learning.” 1Voice described the pandemic as “amplifying” existing problems for AAC For some of these parents, this period at users. Sense reported they were seeing home had prompted them to consider that the inequalities and challenges more permanent changes. 10% of families already faced in accessing the respondents stated that they were now education and support that they needed ‘likely’ or ‘very likely’ to consider home has just been “broadened and made educating their child permanently. more complex” during Covid (Adoption UK) Children and young people in unsuitable PLASN members noted that some settings or out of school before the partnerships with other agencies were pandemic have not been able to more effective during the Covid-19 transition to educational settings that pandemic as technology allowed a range can meet their needs. (IPSEA) of stakeholders to contribute to annual reviews remotely. National Autistic Society said many of the children on the autistic spectrum “The College were very good. They were not getting the support they closed about a week before lockdown needed before the coronavirus outbreak and they used Microsoft Teams so she began8. When lockdown began in March had regular sessions most days - it 2020, they struggled more than ever, might not have been for very long but along with other children and families there was that routine there which was who had the services they rely on very much needed, And actually some removed or reduced. (National Autistic positives came from that because we Society) found some more effective ways of support actually during that such as A parent of a 10-year-old girl with autism electronic note-taking, which has now reported that schools, local authorities, 8 ‘Autism and education 2017’, the report of an inquiry undertaken by the All-Party Parliamentary Group on Autism

28 | Forgotten. Left-behind. Overlooked. and healthcare services regularly miss disabled or seriously ill young people9, deadlines (e.g. for EHCP turnarounds) Family Fund found that 50% said their but are not penalised. When parents seriously ill or disabled children were miss deadlines there is often no provision nervous/stressed about returning to to accommodate. school and 81% of families reported their child’s mental health had been negatively Mental health and wellbeing impacted.

Ambitious about Autism’s survey Dr Shepherd and Dr Hancock of revealed that 4 out of 5 autistic young University of Sussex found that parent people experienced mental health issues carers reported that a focus on mental before the pandemic and 63% reflected health and wellbeing was a top priority that their mental health had worsened for the first term of education. There due to the pandemic. was also an emphasis on the wider curriculum and a child led, fun, safe, Several parents reported during the and nurturing learning environment to survey by 1Voice that their young support wellbeing. people suffered with anxiety which compounded mental health struggles. National Deaf Children’s Society raised The young people themselves the point that many resources on highlighted the strain this extended emotional wellbeing are not always isolation and dependence on their accessible to deaf young people. parents put on family relationships. While some have accessed online counselling Children’s Development Services Group to try to get some support with this, the also described how their members majority have not. (1Voice) have struggled to access mental health support for young people in their care. Career Connect advisers have reported Assessments have been delayed and examples of significant deterioration the wellbeing of young people has been in young people’s mental health and impacted by Covid-19. increased anxiety levels have been reported across all settings. This has led Anxiety was caused by the loss of to an increase in reported self-harm and routine for many young people with increased referrals to specialist mental autism. 68% of family members who health services such as CAMHS. responded to a National Autistic Society survey10 of 4,000 families said their child The Multi Schools Council via the was anxious at the loss of routine during Essex County Council Submission said lockdown and 65 per cent said they some children reported high levels of were unable to complete online work. anxiety when going to school during (National Autistic Society) the pandemic (as key worker children) because they didn’t know who would be Royal College of Nursing (RCN) there and whether they would have any described how children with SEND who friends. have returned to school are often hyper vigilant, anxious, and irrational which In their online surveys of families raising means that cortisol levels will run high. 9 Family Fund: conducted three waves of online surveys: late March/early April, late April/early May, and August 2020. They surveyed families raising disabled or serious ill young people. The sample sizes were 1,574 families, 2,197 families and 2,149 families respectively. 10 National Autistic Society (September 2020), Left stranded: the impact of coronavirus on autistic people and their families in the UK.

APPG for SEND Report Spring 2021 | 29 They cited research that shows how high called for guidance for schools to take cortisol levels impact memory imprint a flexible approach to authorising and have a negative effect on learning. absences.

The impact on mental health and Family Fund identified that 54% of their wellbeing of family members who were respondents were not receiving the responsible for caring and educating respite/short break provision that they young people with SEND is an important had prior to the pandemic, which had an consideration. Sense reported that many impact on the wellbeing of parents and siblings were “significantly emotionally carers. impacted” by having to attend school and in doing so risk bringing the virus home to their clinically extremely vulnerable siblings. Sense highlighted that there had been little guidance on what to do if a child has a clinically extremely vulnerable parent and doesn’t feel safe returning to school. Sense

30 | Forgotten. Left-behind. Overlooked. And all the support we did have, that “ I had managed to put in place, “ was just gone.

APPG for SEND Report Spring 2021 | 31 Hearing their voice: young people and parents in their own words

Support stopped or reduced “My son had lost all connection with day “My daughter has SEN, statement and services, clubs and respite. My son has full time 1-1 support but the school have routine, but his world has been turned not acknowledged this at all.” - Parent upside down.” - Parent via Ambitious via Adoption UK submission about Autism submission

“It is very sad to see that the lives and Accessibility of home learning care of our young people is regarded and differentiation as so unimportant that the services we rely on for support, such as community “To access learning everything must be learning difficulty team, were deemed differentiated for my daughter. non-essential and closed down for She can use her computer to spell six months.” - Parent via the 1Voice out words and construct sentences submission and answers, but she cannot hold a pencil, she cannot hold a book, she “Without my live speaker, my ability cannot access worksheets, so if there to get the grades I know I deserve is is a worksheet or a website that needs severely limited. And seven to eight to be accessed, she can’t do that months of no face-to-face contact with independently. my teachers has put me in a heavily disadvantaged position. As a result I’ve So, when we went into lockdown, we had to do a third year since I know I will struggled at home greatly to support her not be able to get into my University of learning because nothing that came from choice which would be Oxford.” - Deaf school was made accessible for her. young person, via oral submission So, there would be a task put up digitally which would say, you know, “look at this website, write a few sentences about “And all the support we did have, that your experience with this or what you I had managed to put in place, was thought of it”. just gone. And I think over the entire period of lockdown I had one phone But for my daughter, she would need us call from the school where he was to access the website, press play, find, on the roll, although he was getting maybe create a grid on her computer what’s termed as alternative provision. so she could put the words in the right But other than that, I had no contact order. None of that was done from from the local authority or from social school. So, her learning and ability to services’ disability team or anything progress was massively affected by it.” – like that to find out how we, as a family Parent of a child who uses AAC, via oral were coping.” - Parent of a child with evidence diagnoses of ASC and ADHD, via oral submission

32 | Forgotten. Left-behind. Overlooked. “We went into lockdown. Things moved no longer receiving constant support online. I’m not great with technology, from CAMHS; telephone calls have so couldn’t take part. My tutor was been offered but I am deaf, so they understanding that I couldn’t do aren’t accessible. I can’t cope with the the work. I felt isolated and couldn’t uncertainty of all this and feel as though complete everything for the course. I still I am stuck.” - Young person via National passed but wish I could finish properly.” Autistic Society submission - Young person with Cerebral Palsy and Learning difficulties via oral submission Social

“During the lockdown from March “Lockdown was great for a while as it onwards our child received education took the pressure off. Now of course, in a very sporadic fashion. Lessons he is in a well-established pattern were not consistent, some not even of seclusion.” – Parent via RCOT taking place, language subjects used submission language videos such as Seneca for the entire lockdown, tests were given at the same time as answers, and there was EHCPs no marking at all in the whole of the lockdown period. There was nothing “I also wanted to ask why such a long to know the child had understood the process to get an EHCP and why there’s information received. Quite a lot of the a very much a lack of support at the time all they had to do was click a box same time the applications are going through. To me, it meant taking off a that stated, ‘Marked As Done’.” - Parent year of school.” of a 16-year-old - Deaf young person via oral evidence “Ask for default subtitling on all video calls - that would make a massive Transitions difference because there are so many occasions where I’ve been in lessons “My name is Amy, and I am autistic. This and the subtitles have not been on September, I have gone to secondary even though they’re very easy solution school and feel more could have been to have. Also, clear face masks, more done in the way of transition during awareness, if you could provide funding Covid-19. for schools that can’t provide face masks for students that would be a big I feel it should be mandatory to have difference as well.” - Deaf young person some form of transition that shows how via oral evidence things will look in your new school and introduce you to the staff that will teach Changes to routines a person.

“My son has routine, but his world has I also think more money should be been turned upside down.” – Parent via put into our local council for pastoral Ambitious about Autism oral survey support in the classroom. This would be helpful to educate (using the curriculum) “My name is N and I am 16. I am students as well as teaching them life dependent on routine and structure – skills and supporting them. It was very needing a rigid plan for each and every helpful to me in primary school and is in day. And now, nothing is clear. I am secondary school too.

APPG for SEND Report Spring 2021 | 33 If there is more work on transition and “The week before college started, I pastoral support during a pandemic it received a phone call from the taxi will be beneficial for students like me in company to ask if H was returning to the future if another pandemic happens college because she wasn’t on their list. it will help others with anxiety.” - Young This was a surprise to me as this is H’s person with autism 3rd year at the college and transport has always been in place. I called transport “There are no specialist colleges locally, and she wasn’t on their list either. The so we have looked at mainstream transport team then realised that it colleges and we have only been able was because H had turned 19 and her to do so online watching open days, social worker had not submitted the this really does not give a feel for the paperwork needed. After transport college being suitable or give you the and myself had been in touch with the opportunity to speak to staff especially social worker, H’s transport was put into SEN support staff. place a couple of days before she was due to return. The first week of college I We need to ensure the college my child discovered that H didn’t have transport attends can provide the support for my on Tuesdays because it’s a half day child’s special education needs and it is and NYCC will only pay for transport proving difficult to speak to the SENCOs mornings and at the end of the day. For at the colleges we are interested in, the past two weeks her PA has taken her although I have written to the SEN on Tuesdays. The social worker has been departments, I have still not received a in talks with the transport team and reply. has now managed to get a taxi in place for Tuesdays.” - Parent’s experience of The annual review is a slow process post-19 transport finalising professional reports from the school and I am expecting the LA will then slow the process down further “[Named LA] have decided to cease by issuing a nonsense EHCP that I will the EHCP in July. My son will be unlikely endeavour to ensure has the provision to return before this, so will have no my child needs, so I will once again most ‘ending’, not complete his objectives likely find that I will have to appeal. This and have no transition. He also has appeal will take place while I am trying nowhere to transition to. We’ve gone to support my child through GCSEs from 24/7 residential Monday to Friday and trying to find a placement that can term time and PA support at weekends meet my child’s needs. It will be difficult and holidays to absolutely nothing and to secure a suitable college without home full time. I’m a single parent and a finalised EHCP.” - Parent of a child feeling the strain physically, emotionally, transitioning to post-16 placement in and financially. Nothing is being done to September 2021 support us.” – Parent via Special Needs Jungle submission “Transition from primary school to secondary school is vast. It’s massive and “Look at how they managed the it takes a little bit of early intervention transition of children with SEN from and if families are not getting that within primary to secondary. My daughter a mainstream environment, they will be should have been transitioning for at forced to go to a specialist.” – Parent via least 5 months prior to finishing primary oral submission and then she should have been having a full week in school holidays getting to

34 | Forgotten. Left-behind. Overlooked. know the teachers and other children. to support my child through GCSEs None of which could be done because of and trying to find a placement that can Covid-19, but now she is expected to just meet my child’s needs. It will be difficult go straight into secondary school”. to secure a suitable college without - Parent via Family Fund submission a finalised EHCP.” - Parent of a child transitioning to post-16 placement in “My disabled son has missed out on September 2021 his final year at school this has had a negative effect on his mental well-being. Return to school post-first He has had no transition into college, and lockdown I’m worried how he is going to cope”. - Parent via Family Fund submission “There are hundreds, if not thousands, of children across the country who are “Some young people are transitioning transitioning back into education quite without finishing courses they were on. apart from the Covid situation. And the specialist colleges are reporting And more worryingly perhaps are the they cannot provide for them to finish children who are not able to undergo what they started. The communication those transitions because there simply between the local authority and families aren’t the places available for them.” has been non-existent until complaints - Parent of a child with diagnoses of procedures are started.” – Parent via oral ASC and ADHD, via oral submission evidence “We have been very isolated. The initial “There are no specialist colleges locally, lockdown was very confusing to our so we have looked at mainstream children and now restrictions have been colleges and we have only be able to do eased and they are expected to return so online watching open days, this really to school without any support regarding does not give a feel for the college being transition etc. …Their worlds were already suitable or give you the opportunity to very confusing before coronavirus and speak to staff especially SEN support are even more so now”. - Parent via staff. Family Fund submission We need to ensure the college my child attends can provide the support for my Risk assessments child’s special education needs and it is proving difficult to speak to the SENCOs “My input was added once the decision at the colleges we are interested in, that my son had to stay home had although I have written to the SEN already been made.” – Parent via Special departments, I have still not received a Needs Jungle submission reply. “The risk assessment was written The annual review is a slow process without our input and had to request a finalising professional reports from the copy. No information about a return risk school and I am expecting the LA will assessment” – Parent via Special Needs then slow the process down further Jungle submission by issuing a nonsense EHCP that I will “We had a letter to say a risk assessment endeavour to ensure has the provision has been undertaken and it is deemed my child needs, so I will once again most not safe for him to return to school at likely find that I will have to appeal. This the present time. I haven’t received any appeal will take place while I am trying further details.” – Parent via the Special

APPG for SEND Report Spring 2021 | 35 Needs Jungle submission tight for 29 pupils, 1 teacher and class TA, and two TAs working one to one “A risk assessment is in place for her with pupils with EHCPs.” - Parent of transfer to and from her placement for a young person with sensory, motor, home visits (alternate weekends and learning and communication disabilities school holidays). I was impressed with associated with Down syndrome the detail the school included.” – Parent via Special Needs Jungle submission “There have been numerous changes to routines, change in classmates and rota. Covid regulations My child was in a constant state of terror, hyper-excitement and not regulated’. “Ever since the start of the pandemic it - Parent via Ambitious about Autism was crystal clear that whilst rules were submission in place to protect social distancing, bubbles, restrictions on movement etc., Positives that my son wouldn’t be able to attend school. Not because his behaviour “The huge drop in anxiety by not being is poor - because actually he’s well at school. He struggles with eating and behaved - but because of his extremely weight gain but since stopping school poor understanding and his need to have has gained 3kg and looks amazing. He breaks between sessions of learning. We is not bullied or left feeling worthless can’t explain to him what has happened. anymore like he does at school.” - Parent He needs to be able to move around via Dr Shepherd and Dr Hancock’s school and access toys, sand, water etc., research but he can’t any more. There isn’t the space - the school has no free rooms or Exacerbating pre-existing space, the items he usually plays with problems have been removed, and he can’t go into those bubbles. He inevitably would need “You have no idea what you’re actually to be restrained, and that the effects entitled to and what your child could undoubtably will have a long term effect get. It’s almost as if they’re hiding it from on his health. On top of that, it took him you because they don’t want to tell you two weeks following schools closing what is out there. And obviously that is before he stopped putting his school no help to you or your child.” – Parent via uniform every day and attempting to oral submission leave the house. This period of time was very difficult and his stress levels went “It’s (Covid) exacerbating previous through the roof.” - Parent of a 10-year- inequalities that were already there, and old with complex needs including failings in the system.” – Parent via oral Down’s Syndrome, Hearing Impairment, submission Visual Impairment, no speech and poor communication “One of the things that I wanted to emphasise is that when we talk about “My understanding is that Jay spends SEND and the reviews into SEND, the minimal time in the classroom, if any time discussion seems to be about fixing at all. The classroom has been arranged a problem. But ultimately what we’re with rows of forward-facing desks, like a talking about is children and young Victorian classroom but without spaces people. And I’m very clear that my child between the desks, as the classroom is is not a problem to be fixed. The system

36 | Forgotten. Left-behind. Overlooked. has systematic problems, but my child is “You have - there is no other way of a person, not a problem, and I think that putting this - ruined my life. You have needs to be remembered.” - Parent via put my life on hold for the last two years oral submission and I am so sick of it. Every day I hope and dream for a better life but all you “In November ‘I’ will have missed a year have done is shut my life down. How of secondary school, a bright child who dare you. You are supposed to be there is missing out on his education, but for the youth, to help them grow up into more importantly he has no peer group better people. All you have done to me /friends, no age-appropriate activities and many others is disgrace and ruin with friends, no emotional learning with us.” - Young person via Great Minds oral people his age, no confidence to go evidence out alone meet people etc. He is 13 in December he has missed two years of “Realise that if a special needs child school (Y3 and Y7) we have no idea if attends a residential school and is now and when he will join a Y8 class. home, that this will impact the lone This is only a snapshot of the multiple parent and other siblings. Doctors to be failures we have met as a SEN family more accessible and not have to wait for exacerbated by the current situation.” - two weeks for a consultation. I personally Parent of a 12-year-old with ASD profile found the stress so great I cut my wrists ADHD sensory processing twice! However, this was not flagged up and no help offered! I had to struggle on Mental health with two disabled children at home, a daughter who suffered depression with “So how my mental health has been two very small children and an older during 2020 is it hasn’t been too easy. son who lives on his own with psychosis It’s been slightly grim, particularly in the and schizophrenia.” - Parent/carer via beginning of the March lockdown That SENTalk submission was when we were really going to go into draconian measures when we all had “One of our parents has had her 19-year- to quarantine ourselves in our homes old sectioned last week. He couldn’t and we couldn’t be able to do a lot of cope with the confinement of being the things we always loved doing in our at home. Ran away several times and lives.” – Young person with autism via was eventually picked up 25 miles away oral evidence sitting on a bridge.” – A local parents’ group via National Autistic Society “She has no EHC plan, is performing submission academically four years behind her peers (in mainstream school), has secondary “The impact of this on our child and cancer and is getting a welfare call once ourselves as parent carers is going a week and work sent home that she to have a lasting effect. We are both can’t do. She has been told to stay in her exhausted physically and emotionally. room as she is high risk. We are dealing We are still in lockdown due to our with huge meltdowns and daily verbal child’s vulnerability…we are both abuse. This is all caused by anxiety, suffering with anxiety and depression.” uncertainty and no routine.” – Parent of - Parent of a child who uses AAC, via autistic teenager via National Autistic the 1Voice survey and submission Society submission

APPG for SEND Report Spring 2021 | 37 She has been told to stay in her room “ as she is high risk. We are dealing with huge meltdowns and daily verbal abuse. This is all caused by anxiety, uncertainty “ and no routine.

38 | Forgotten. Left-behind. Overlooked. Summary of recommendations

Adoption UK UK Government during the Covid-19 pandemic. Recent research with • Funding and resources allocated mainstream school staff has highlighted to allow the extension of learning the challenges they faced in operating support, including 1-1 support where their settings given the lack of guidance needed for children with recognised (and/or lack of notice of guidance) from SEND, especially those with SEMH the UK Government (Kim & Asbury, • Funding and resources allocated 2020). PLASN members felt that these to expedite access to higher level issues were particularly problematic for support (including progressing EHCP special schools. As one example, applications and reviews) especially guidance on minimising contact between where processes have been delayed individuals was introduced in schools due to Covid-19, or SEND needs have across the UK to limit the spread of become more severe due to missing Covid-19. Mainstream schools were able education during partial school to address this with the implementation closures of initiatives such as ‘bubbles’ (to ensure • Funding and resources allocated to that staff and pupils in different year/ provide additional counselling and class groups did not mix), yet special mental health support for those who school pupils do not just encounter one need it, and especially those with a another in school but also via school history of trauma, or who may have transport services. This reflects how experienced trauma, bereavement, special school pupils often need to anxiety due to loss of family income travel significant distances to access and other challenges during Covid-19 appropriate educational that meets their • In view of continuing partial closures needs (APPGA, 2017). Even prior to the and bubbles isolating at home, the Covid-19 pandemic, the coordination and DfE to provide specific guidance provision of accessible pupil transport to schools about supporting care services for those with SEND has been experienced children and those reported to be a complex endeavour with SEND, and SEMH needs (Ross et al., 2020). The use of class/ during school closures, including year group bubbles recommended to maintaining effective home- limit the spread of Covid-19 simply did school communications, providing not take into account the unique context differentiated work, and making of special schools, where pupils from effective use of Pupil Premium Plus different classes will be mixing on school and funding associated with SEND transport. As a result, a single positive Covid-19 case in a special school can Pan London Autism Schools lead to sizeable numbers of children across different class bubbles needing Network to self-isolate (as some of the PLASN schools have experienced first-hand). Despite providing crucially important provision to some of the most vulnerable There was a consensus from PLASN young people in society, there was a members that clearer, setting-specific consensus from PLASN members that guidance was needed for schools, special schools were overlooked by the and much earlier. Put bluntly, special

APPG for SEND Report Spring 2021 | 39 schools needed to be prioritised by the facilitated communication with parents UK Government rather than treated as via a variety of routes. For example, an afterthought. Research with staff some schools implemented a policy of in mainstream schools has highlighted weekly calls to families; discussing the the need for more joined-up thinking highs and lows of the week, any issues, from the Government in their Covid-19 and any important school updates. educational response (Kim & Asbury, Parents were encouraged to contact 2020). Mainstream school staff have also the school if there were any problems emphasised the need for greater clarity and PLASN members emphasised the in communications to school (to facilitate need to be responsive to parents and planning by school staff), and additional accommodate all requests (especially in opportunities for consultations that crisis situations). Conscious of the need include a broader range of stakeholders to be sensitive to the language barriers (Kim & Asbury, 2020). We echo these experienced by many families living in calls, and further highlight the need for multicultural London, PLASN schools senior leaders of special schools to be arranged for staff who spoke the families’ centred in such conversations: whilst home language to call home; ensuring special schools may cater for a minority that their needs were truly understood, of pupils, these pupils have some of the and subsequently met. Learning more most significant levels of need. about their school communities and their home circumstances during the To meet special school pupils’ high Covid-19 pandemic was reported to be levels of need, one of the first actions hugely beneficial in developing positive undertaken by PLASN schools (in March home-school relationships. The emphasis 2020, following the announcement of was not only on the mental health and strict physical distancing measures) was wellbeing of pupils, but also striving to the creation and completion of detailed ensure the safety and wellbeing of their and robust risk assessments, to continue families. Taking a proactive approach delivery of services to every pupil. The also meant that schools could act goal was to identify the most vulnerable swiftly in addressing any issues and/ pupils and families, in order to coordinate or safeguarding concerns as and when the educational provisions on offer to they arose. Holistic support was felt to each pupil. PLASN schools emphasised be particularly crucial given the high the need to take a holistic approach to levels of caregiver burden and parenting support; defining vulnerability not just stress experienced by parents of autistic in relation to SEND, but acknowledging children with complex needs (Baykal the multiple, intersecting ways that et al., 2019; Postorino et al., 2019). The pupils and families could be vulnerable adaptations implemented as part of (for example, ensuring that the needs schools’ Covid-19 responses were found of single parents and/or parents with to be particularly helpful in this regard. additional needs themselves were met). For example, removing the need for Initiatives such as providing food and face-to-face consultations with parents educational resources to families was proved advantageous to families (e.g., encouraged. reducing the burden of organising childcare). Some PLASN members Underpinning schools’ ability to provide reported that, post-pandemic, they holistic support was the focus on clear planned to have more regular, online and regular communication with families, parent consultations (as opposed to less to build robust partnerships. PLASN frequent, in-person meetings) as a result members ensured that their schools of this.

40 | Forgotten. Left-behind. Overlooked. the opportunity to continue receiving Despite these newfound opportunities, their education on school premises could the Covid-19 pandemic was felt to not always do so (e.g., due to health expose and perpetuate inequality among concerns). Further, as previously noted, an already vulnerable group of pupils positive cases of Covid-19 could quickly and families (see also Pellicano & Stears, close several bubbles across the schools, 2020). Even before the pandemic, resulting in pupils having to self-isolate many of the pupils attending PLASN at home. It quickly became apparent to schools (and their families) were felt to PLASN members that families did not be disproportionately disadvantaged have the resources necessary to support and on the margins of society. For their children’s learning when not on example, the stigma experienced by school premises. Many schools therefore parents of children and young people provided equipment (e.g., sensory on the autistic spectrum and/or with items, books, stationary) to families to intellectual disabilities has been well support them with home learning. This documented (Mitter et al., 2019). This was reported to be hugely beneficial, in disadvantage is often compounded by order to transfer learning from school a range of other intersecting factors to home. Whilst caution needed to be (e.g., being from a minority ethnic exerted in terms of not placing too background) and/or factors directly high expectations on parents in terms related to having a child with SEND of providing educational input for their (e.g., financial hardship associated with children (especially given the high being unable to maintain employment degree of burden and stress generally due to caring responsibilities). PLASN experienced by parents of children with school staff emphasised the need to go SEND), the provision of some limited beyond the young people’s SEND and equipment was felt to be an initiative take a broader approach to identifying that would be useful to maintain post need. As one example, technology has pandemic; fostering collaboration become a valuable tool for facilitating between school and home. Collecting education during the Covid-19 pandemic, feedback on the accessibility and quality yet this limited opportunities for those of home learning was an ongoing who did not have access to computers process, with school staff responding or the internet (Van Dijk, 2017). Ensuring creatively (e.g., by training parents in all pupils and their families have the widely used classroom approaches; by necessary resources to access their providing engaging learning activities for education – at school and at home – was the whole family to participate in). felt to be crucially important, particularly for vulnerable groups attending Collaborative working forms a central specialist educational provisions. PLASN part of important legislation for schools ensured that if they were not pupils with SEND (as detailed in the able to offer the support themselves, Children and Families Act; Department they signposted families where needed for Education, 2014) and is a major (e.g., to charities, food banks). component of the EHC plan process (see Department for Education, 2014). The need for greater support for home Despite this, some pre-pandemic learning was also crucial given that not partnerships have been reported to be all pupils were able to attend school fraught with challenges. For example, during the Covid-19 pandemic. This education providers often lament the was especially true for pupils in PLASN lack of input from health and social care schools, as even those who were offered providers during the EHC plan process

APPG for SEND Report Spring 2021 | 41 (Boesley & Crane, 2018). Encouragingly, PLASN members noted that some of Ambitious about Autism these partnerships were more effective during the Covid-19 pandemic. For • Listen to young people themselves example, technology allowed a range about what needs to change. of stakeholders to contribute to • The Government should ensure that annual reviews remotely. What was autistic children and young people’s disappointing, however, was that it needs are specifically covered in the required a national and international national SEND review, and that no crisis to facilitate this practice that child with autism or SEND is held is in the best interests of vulnerable back from returning to education. pupils. As such, PLASN members felt • The Government should have an that more frequent and more authentic action plan to protect autistic children collaborative working should be a major and young people as the Coronavirus strategic priority following the Covid-19 pandemic continues, including how pandemic. to avoid using powers under the Coronavirus Act that limit duties to 1Voice assess and meet disabled people’s needs. 1. Regular 1:1 online interaction with • Prioritise measures to tackle education staff trained to help AAC loneliness and isolation such as online users learn peer support that can make timely 2. Provision of learning materials which referrals to more specialist provision. were accessible • Jointly commission services. Now 3. Access to priority testing for care more than ever, education, health support workers caring for AAC users and social care must work together 4. Maintained access to vital services like to ensure the most vulnerable do not physiotherapy, speech and language slip through the net.

• Greater recognition, funding and Career Connects understanding of the vital part played by services in the lives of • Additional support for Year 11/13/14 this population. Learning disability leavers with transition, especially services, speech and language those with EHCP’s that have not been therapy, physiotherapy and care offered a place in Post 16/18 learning. support are not additional services This funding should be routed but meet fundamental needs. These through local authorities to ensure it services cannot be closed down reaches local areas. and deny access to the people they • Additional funding to support support. employers who are able to offer • Clarity and national standards over apprenticeship or supported who is responsible for IT support internship provision to young people needs to access learning for AAC with SEND. users. This should be detailed in • Additional support for education EHCPs and in LA’s local offers providers to work with young • National standards over the people to develop additional coping differentiation of learning material strategies for young people and and curriculum access for AAC users parents to deal with uncertainty and to overcome the postcode lottery. increased levels anxiety.

42 | Forgotten. Left-behind. Overlooked. • Additional funding routed via local to establish and re-establish class authorities or voluntary sector routines. organisations to work intensively with • Designate time to provide students young people who have SEND and with opportunities to engage with are NEET to provide support to move friendships groups. into appropriate provision. • Provide support for those children • Work with families to provide that are not looking forward to, or appropriate opportunities for respite anxious about, the return to full time support and community engagement education. • Ensure all aspects of school Dr Jacqui Shepherd and Dr emphasise a steady, gentle and gradual approach that avoids abrupt Christina Hancock changes. • The return to full time education should be a slow and gradual approach that supports the individual Recommendations for the first term back needs of children with SEND and their at school: families. • Teachers and schools should focus on mental health, wellbeing, routines and • Teachers, teaching assistants and SENCOs should take time listen to relationships across the first term of parent carers and children with SEND full-time education. as they have had unique experiences • Time should be given to reflect on that can be used to revitalize and the Covid-19 pandemic and the improve education. experience of it for individuals and • Priority should be given to routines, their families. wellbeing and social aspects of • Re-assessing the current and education ahead of academic developing social, emotional, pressure. academic needs of children should be a priority. Recommendations for the first few days • Core subjects need focus but social and weeks of school: communication and interaction need • The first few days of education should fostering across the period of social be a gradual and flexible process that distancing. reflect the experiences, preferences • Technology, phased returns, 1 to 1 and concerns of children with SEND. support, small group work, social • Ensure frequent contact with parent stories, checklist and visual supports carers to listen to their experience of are all preferences identified to lockdown for their family. support children to transition back to • Communicate with the children full time education. directly to identify unique concerns • Use the home learning preferences that need to be addressed. and anxieties identified by parent • Take into account that children have carers and children to redevelop and had diverse experiences across enhance learning at school. lockdown and this will impact their feelings towards returning to school Essex County Council and could affect their engagement and attitude upon arrival. The over-riding message from the • Plan highly structured activities children and young people from the across the first few days to begin Multi-Schools Council is that they want

APPG for SEND Report Spring 2021 | 43 more recognition of how important peer process, not be a short-term support to peer support is to young people. This package. would include: • ensuring the right support is in place • children to have a buddy or to support mental health, which may mentor on return to school and include provision like play therapists the opportunity to talk about their and modified CBT. experiences • Sensory equipment, videos or • more opportunities to speak to their webinars may be useful to families friends and more time to get advice while community and school play from peers who may be feeling the facilities are unavailable. same way • Families with a child with severe • provision of mindfulness activities, health conditions who were asked and a chance to try things such as to shield needed a different offer yoga and meditation of support which includes access • opportunities to socialise and to have to parent and/or sibling support, some ownership over their social emotional support and video/phone bubbles counselling as an alternative to face • prioritising school sport as it is key for to face. wellbeing • staff to be mindful that things are Recommendations from the Kooth different, how this can affect young survey: people and have the correct training • Invest in a range of ways to check for staff in supporting children’s in with young people to ask them mental health how they feel: privately in a one- • preparation on what school will to-one setting when they return to look like when children are back so school, over email, on the phone, or children also know how to follow the anonymised surveys rules, including virtual information • A gradual return, including more to be available before returning to social time, potentially by extending school social time at lunch; a slower pace of • easy back into work; not expect learning, and support with workload children to work at the same speed • Lessons and resources on mental as before, providing catch up lessons health, and open discussions to help and to have a gradual build-up of students with their mental health work • Easy-to-access mental health support • ensuring there is a range of school within the school, and signposting to subjects and not just focusing on support elsewhere English and Maths • Peer-to-peer mental health advice • embracing technology more and support • working in smaller groups as the • Check-ins with students with a history new normal and make sure they of mental illness have plenty of opportunities to learn • Break-out spaces for young people outside when they feel overwhelmed

The key recommendations from the National Deaf Children’s Essex Family Forum: Society • recognising that transition back to routine will be a long process for In the short-term, we believe the some children with SEND and support Department for Education should set will need to bridge that whole

44 | Forgotten. Left-behind. Overlooked. out how disabled children will benefit We recommend families continue to from the recently announced plan for have access to vital formal services catch-up support and formal one-to- and therapies they have assessed to one tuition, and how the expertise of receive such as Occupational Therapies, specialists such as Teachers of the Deaf, Psychology, and CAHMS support. will be mobilised as part of this. We have Alternative methods such as online or seen virtually no reference to disabled telephone support should be offered children in any of the information when face to face is not possible. The published so far. A national plan that sector needs to ensure families have doesn’t meet the needs of disabled information on how to access support children is not a national plan and will to ensure they can weather the physical not succeed. and emotional impact of the crisis. We recommend families continue to have Over the longer-term, we believe the access to respite support from carers Department needs to carry out a full and personal assistants. The pressure assessment of the impact of coronavirus of 24 hour care has led to additional on disabled children, along with a stress for families. Care providers clear action plan in response. We are have begun to develop services which particularly concerned about the risk of observe social distancing rules such as significant future disadvantage brought support outdoors and booking systems about by, for example, late diagnosis for for respite facilities. Examples of good many deaf babies and children, reduced alternative models of support need to be access to specialist support and a lack of shared with providers to ensure safe care support with transitions. and support services can continue for those assessed to receive it. It is also clear that coronavirus has We recommend families are able to exacerbated existing challenges around retain a small network or ‘bubble’ of specialist support that need to be support around their families where it addressed in any recovery plan. In is safe to ensure they retain some of particular, we continue to face a crisis in the physical and emotional support to the falling number of qualified Teachers enable them to get through any similar of the Deaf – a 15% decline since 2011. crisis in future. Additional guidance/ The coronavirus pandemic has shown express permission will be needed from the important role that Teachers of the Government, similar to the ‘leaving Deaf have been playing in engaging home guidance’ for those with health with families at home and continuing to conditions during the Covid-19 outbreak. support home learning. There remains a need for urgent short-term action to Children’s Services fund the training of the next generation Development Group of Teachers of the Deaf. We understand that officials have Our report sets out a number of been continuing to work on the SEND recommendations, including that review during the last few months. all providers (local authority and We are concerned about the lack independent sector) must begin of transparency over this work and preparing all children and young people engagement with others. with SEND for adulthood from the day they enter specialist education. Family Fund CSDG believes that a number of

APPG for SEND Report Spring 2021 | 45 flexibilities and leeway in existing and young people with EHC Plans would government guidance means that be able to use until age 25 to request young people with SEND are not always access to funding to support them getting the right support. For example, into independence. This could include the SEND Code of Practice should be support with living costs, paying for updated to state that: • “For a young training or upskilling programmes, or person with an EHC Plan, the local contributing to a house/flat deposit or authority must ensure that the transition tenancy fees. to adult care and support is well planned, is integrated with the annual reviews Local authorities should also be obliged of the EHC Plans, and reflects existing to provide young people with SEND, special educational and health provision who are leaving specialist education that is in place.” – rather than “should settings, with free access to mental ensure” as it currently states. • “19- to health support services. This should be 25-year-olds with EHC Plans must have in line with their assessed health and free access to further education in the emotional wellbeing needs, up to five same way as 16- to 18-year-olds.” – rather years after leaving specialist education. than “should have” as it currently states. Mental health and social care services • “Very few moves from children’s to must collaborate to ensure there is not a adult services will or should take place cliff edge of support in access to mental on the day of someone’s 18th birthday health services. and this should never happen if a young person has not yet completed the Making Chromosomes Count academic year in which they turn 18.” • “Support should never cease before the We would like to see the following end of the academic year, to allow young changes made to the SEND process, people to complete their programme of with specific reference to children with a study. In the case of a young person who diagnosis of Down Syndrome. reaches their 25th birthday before their course has ended, the EHC Plan must be 1. All parents/carers of children who maintained until the end of the academic have a diagnosis of Down Syndrome year in which they turn 25.” – rather than should be sent formal information from “should generally cease at the end of the their Local Authority SEND department academic year” and “can” be maintained detailing their right to apply for their as it currently states. child to be assessed for an EHCP. We believe this should happen by the time Our report also recommends that to the child is 24 months old in order to address the provision gaps created by allow for the process to be finalised by the involvement of multiple agencies in pre-school entry. a young person’s support, every looked after child and each young person 2. Any application made, for the purpose with an EHC Plan should be allocated of ascertaining if they need an EHCP, for a personal budget to fund all care, a child with Down Syndrome, must be education (separate to those covered by approved. It must be made mandatory the national funding formula for schools) that children with Down Syndrome, and health needs. who have a clinical diagnosis of learning disability, can access an assessment for Building on this, we recommend that a their need for an EHCP. centrally run ‘Transitions Support Bank’ should be set up which all care leavers

46 | Forgotten. Left-behind. Overlooked. The current process is discriminatory education. and is failing our population of children • Occupational therapists to be with Down Syndrome in the most protected from redeployment to adult diabolical manner. The team at Making services unless absolutely necessary Chromosomes Count are eager to to ensure support for children and discuss this issue with the APPG for young people with SEND can be SEND to seek assistance in how we maintained. begin to address this issue in parliament. • Schools must remain open and occupational therapists allowed Royal College of Nursing to visit students who need in person support to facilitate positive • To fully consider an effective and transitions. While government sustainable nursing workforce guidance is that access to health better able to meet the needs of services is specifically allowed at this population. Current failures to school, decisions are being made at a tackle the nursing workforce crisis local level that limits this access. are leaving those most in need of • Better communication between care facing the biggest problems in health, education and social care at accessing the care that they need. a local level to ensure occupational • To provide greater focus on the therapists have the information identified and unmet needs of this they need to plan and support group of children and young people students with SEND to make positive and adequate resourcing provided. transitions to new classes or settings • To strengthen the support for families • Access to digital technology for who require greater help in the families of young people with SEND care that they offer to children and and occupational therapists to ensure: young people, particularly during this Young people with SEND and their pandemic. families have access to high quality • A recommendation for the APPG online materials and support as part might include the promotion of the of a ‘blended’ offer of digital and recently launched DfE Relationships, face-to-face occupational therapy Sex, and Health Education curriculum; support at times of transition; and fast tracked to support children with To enable effective liaison between SEND in particular, which would give young people, families, occupational heart to the curriculum, and a long therapists and other members of term statutory framework. It was the multidisciplinary team (in health, launched in July by DfE. education and social care) to support • young people with SEND at key Royal College of Occupational points of transition Therapists Sense • Better coordination of guidance issued by the Department for Children and young people with MSI Education and NHS England must still get the specialist educational providing clear and timely information support, equipment, care and therapies for occupational therapists and they need to avoid more complex other allied health professionals medical needs developing, both in school who support children and young and at home if they remain shielding. We people with SEND across health and want to see greater whole family support

APPG for SEND Report Spring 2021 | 47 for those who are clinically extremely improved; 2.3. the support that was vulnerable. offered to families during this period; Government must produce a long term 2.4. what worked well during this period plan and additional funding for SEND and how this can be continued; 2.5. the provision over the next 6 months so that effect of service disruption on children disabled children are not excluded from with SEND and the projected time and the education, care and support they costs involved in reversing the effects of need. these lost services; and 2.6. development Support should be available to ensure of a base service that can be provided children and young people with MSI are in emergency situations, including able to safely transition back into school assigning roles that have extra training or college, with particular attention to and the expectation that these skills will children and young people moving to a be maintained. new education setting. 3. Research to ensure a better Special Needs Jungle understanding of who needs to shield and how they can be easier to identify 1. National government recognises and reach. Council disability registers for that families with children who have both children and adults could be used SEND need clear guidance that is and expanded to support this. timely, unambiguous and written after consultation with a wide range of 4. Ensuring that guidance for clinically stakeholders. This should include: 1.1. vulnerable children is considered equally An independent review of the decision as important as guidance for adults, and to temporarily modify s42 of the should not be an afterthought. Children and Families Act to consider appropriateness and how the relaxations 5. National research interviewing the were used or abused, both before and schools that did exceptionally well for after the announced easements were put their disabled students during lockdown into force. This is crucial to ensure future and the reasons others did not. This can crises do not leave disabled children be incorporated into well evidenced without any provision for months. 1.2. A guidance for remote or blended learning national consultation with all disabled for future crises and to better support adults and families of disabled children, children who are unable to go to school. to understand their experiences during 5.1. That government investment in any the pandemic and how they could be online or blended learning offer, such as better supported and protected during Oak Academy, includes a requirement for national crises. differentiation of lessons.

2. A wide-ranging review into how 6. Schools should contact their SEND local and national public services for families to ask what worked well and children with special educational needs what did not. This feedback should operated during lockdown. To focus on: be used to improve the school’s offer 2.1. why some services were unavailable going forward, including: 6.1. reviewing or had limited availability, whether this differentiation for pupils with SEND was avoidable, and if alternatives could both in remote learning and classroom have been found; 2.2. how effective learning; 6.2. reviewing how risk communication was with families during assessments were used by the school; this time and how it could have been 6.3. the support offered for families with children who have SEND, and if this

48 | Forgotten. Left-behind. Overlooked. was the support the families actually on working parents and mentoring wanted; 6.4. how teaching assistants through the process of developing were deployed during this period, Education Healthcare Plans. specifically those assigned to specific • Restructure education: Re-design children; 6.5. what worked well for the approaches used in teaching families in lockdown and how that might and learning, including optimising be incorporated into their educational space and learning environment, offer; 6.6. the training or resources the use of resources to accommodate a school needs to make better use of diverse range of needs, reduction of IT in education; 6.7. what percentage pressures through testing and better of pupils have access to the right mentoring during transition. technology to take part fully in online • Enforce: Where local government, learning, and what can the school do to trusts and schools have failed to support those who do not; 6.8. return live up to, often legal, guidance or to school strategies for pupils that may requirements, policy makers and find it difficult, including offering flexible government needs to hold them to learning for those who found learning at account. This should not be in the home beneficial; and 6.9. introduction of form of financial penalties, but in an emergency response policy for each mandated additional support and/or school to be instigated if the school is leadership. forced to shut down. This policy should • Put wellbeing first: Wellbeing, mental specifically outline how the needs of health and engagement in learning vulnerable children will continue to be should be the key objectives for all met. policymakers. Policy needs to reflect on how best that could be achieved Parent of a 10-year-old girl with for children with SEND in the context autism in a mainstream school of ever-changing guidance. • Focus on gaps: In my daughter’s • Train and equip professionals: Do submission, she notes that gaps that more to train and equip teachers, were left for her during transition governors and other education and and others have been evident. Where youth staff in the nature of ASC these gaps have occurred, extra and other neurodiverse conditions. effort and resources will be needed to This should happen in Initial Teacher identify and address them. Training (ITT) and throughout their careers as part of mandatory CPD. • Provide support: Provide a greater level of support at government, local authority, trust (in the case of MATs) and school to those with SEND and their parents. This should include mandated pastoral care, differentiated pedagogy (see next recommendation) and flexibility in understanding the strain and barriers being / having a child with SEND brings. This should accommodate the differences many SEND children display in different settings, the strain

APPG for SEND Report Spring 2021 | 49 The impact of this on our child and ourselves “ as parent carers is going to have a lasting effect. We are both exhausted physically and emotionally. We are still in lockdown due to our child’s vulnerability…we are both “suffering with anxiety and depression.

50 | “Forgotten,Forgotten. Left-behind. left-behind, Overlooked.overlooked” APPG for SEND Report Spring 2021 | 50 Appendices

Organisations that submitted written evidence

Organisation Website

Adoption UK www.adoptionuk.org.uk

Ambitious about Autism www.ambitiousaboutautism.org.uk

Career Connect www.careerconnect.org.uk

Children’s Services Development Group www.csdg.org.uk (CSDG)

Essex County Council www.essex.gov.uk

Family Fund www.familyfund.org.uk

IPSEA www.ipsea.org.uk

Local Government Association www.local.gov.uk

Making Chromosomes Count www.makingchromosomescount.co.uk

NAHT www.naht.org.uk

National Autistic Society www.nas.org.uk

National Deaf Children’s Society www.ndcs.org.uk

Pan London Autism Schools

Royal College of Nursing www.rcn.org.uk

Royal College of Occupational www.rcot.co.uk Therapists

Sense www.sense.org.uk

SENTalk www.sentalk.org

Special Needs Jungle www.specialneedsjungle.com

APPG for SEND Report Spring 2021 | 51 Speakers at oral evidence sessions

23 September 2020 (Focus on communication and interaction)

Farzana Machhada parent, Let Us Communicate

Andy Smith a young person with autism

Kerry Fox parent

Mark Dale-Emberton head teacher

Director & Strategic Lead for families, schools and Emma Mander services integration, Great Minds Together

14 October 2020 (Focus on cognition and learning)

Jimmy Langton a young person with Quadriplegic Cerebral Palsy

a young person with Cerebral Palsy and Learning Carly Blake difficulties

Alison Dowthwaite parent

Alice Marshment parent

Polly Sweeney Partner, Rook Irwin Sweeny – Public Law

11 November 2020 (Focus on social, emotional and mental health difficulties)

Dominic autistic young person

Alison Worsley Director of External Affairs, Ambitious About Autism

Sarah Alexander parent

Rachel Perrin Partnership Manager, Family Fund

Rob Williams Senior Policy Advisor, NAHT

52 | Forgotten. Left-behind. Overlooked. 2 December 2020 (Focus on sensory and/or physical needs)

Dinah deaf young person

Holly deaf young person

Sarah White Head of Public Policy and Campaigns, Sense

Poppy Rose parent and co-founder of SEND National Crisis

Policy and Campaigns Coordinator, Alliance for Inclusive Simone Aspis Education Children & Young People Board Member, Local Cllr Teresa Heritage Government Association (LGA)

All four oral evidence sessions are available to watch at the APPG’s website: www.naht.org.uk/appgsend.

APPG for SEND Report Spring 2021 | 53 Acknowledgments

Thank you to NAHT for serving as secretariat for the group and for collating this report.

We thank all the organisations who submitted evidence to the inquiry and for sharing their own research, conducted over the past year.

We thank the parents who have shared their family’s experience during the pandemic.

We are grateful to the following organisations who supported and facilitated the APPG to be able hear directly from young people themselves during oral evidence sessions: National Deaf Children’s Society, Ambitious about Autism, Disabled Children’s Partnership, KIDS.

In particular, we appreciate the young people themselves who gave oral and written evidence to the APPG’s inquiry. We value and hear your voices.

The group acknowledges the extraordinary effort that has come from staff working in schools, and all involved in education and allied professions, over the past year, to support young people during this uncertain time.

54 | Forgotten. Left-behind. Overlooked. Secretariat for the APPG for SEND is provided by NAHT www.naht.org.uk

APPG for SEND Report Spring 2021 | 55 All-Party Parliamentary Group (APPG) for Special Educational Needs and Disabilities www.www.naht.org.uk/appgsend [email protected]

Spring 2021