Written evidence from Mrs Sharon Smith (CFA0087)

 

HOUSE OF LORDS CHILDREN AND FAMILIES ACT 2014 SELECT COMMITTEE INQURY

 

 

Submission to the House of Lords Children and Families Act 2014 Committee

 

Sharon Smith – parent and PhD researcher (University of Birmingham)

 

25 April 2022

 

Introduction

 

  1.              I am a parent of a young lady (17 years old) who has Down syndrome. She attends a mainstream college and has attended mainstream education settings throughout her education. We live in Hampshire.
     
  2.              I am also a PhD researcher at the University of Birmingham, approaching the final year of my doctoral studies. My research has engaged with parents of disabled children to explore their experiences of inclusion and education.
     
  3.              I also work freelance/part-time for Contact (the national charity for families of disabled children), both supporting parent carer forums and delivering training to families via Contact’s family workshops. The topics for these workshops include education, behaviour, sleep, money matters, post16/transitions, parental wellbeing, early years and meetings. Through this work, I have met hundreds of parents of disabled children in the last two years.
     
  4.              My views are based on my experiences as a parent, PhD researcher and trainer for Contact. Please note: I am not writing on behalf of Contact, rather this response is based on my personal observations from listening to the problems parents have described in these sessions. My observations from this training only relate to SEN support, as this is an area that is lacking from my own experience and those parents engaged in my research inquiry.
     
  5.              I note the Committee’s terms of reference. This submission focuses on Part 3 of the Children and Families Act 2014, and on question five in the terms of reference: Has the Act achieved its goal of improving provision for children and young people with SEND, in all settings including mainstream schools, special schools and further education colleges? If changes are needed, could they be achieved under the framework of the Children and Families Act 2014 or is new legislation required?
     
  6.              I am happy to provide any further information that the Committee would find useful, or to provide oral evidence if required.
     

 

Personal feedback on the Children & Families Act 2014

 

  1.              My own experiences as a parent certainly do not reflect the ambition of the reforms to make the system less confrontational and to put families at the heart of decision making. Although my daughter completed her school education in mainstream settings, this was due to our hard work and perseverance and we have frequently found ourselves having to resort to complaints, subject access requests and more recently a tribunal appeal. As a parent, I have had to become knowledgeable about the law, and my daughter’s rights, and how to enforce them. I should not have to do this. I should be able to know that a school has my daughter’s best interests at heart and that the local authority will meet their legal duties. Sadly neither of these things can be relied on, and I have had to spend hours writing emails, making phone calls and attending training sessions to help get even the basis levels of support for her. It is stressful and exhausting! I will provide a few examples in the next bullet points.
     
  2.              When we approached our local secondary school to discuss my daughter starting there the following year, we were told by the SENCO that they were unable to differentiate to a level that she could work at, and that they fail the bottom 25% of students in the school, but if we wanted to send her there it was of course our choice. They told us we would have to prepare her timetable in a way she could understand as she would not be able to access their standard version. They told us they were concerned about the cost of including her in the school and even told me what they had worked that out to be (including a breakdown, for instance 2hrs of Head of Year support per week was factored in). They clearly did not want her to attend and were doing everything they could to put us off from sending her there.
     
  3.              During her secondary education, she was mainly ‘taught’ by learning support assistants rather than teachers, and in the final two years of her secondary school education she spent most of her time outside of the classroom, in a dedicated learning support room with a learning support assistant rather than learning alongside her peers. Her school had low expectations about what she could achieve, and it was only because we supported her education at home during Covid lockdowns that she achieved a GCSE grade in art & design as the school had not adapted her work in a way that she could succeed. As soon as we did this for her at home, she was able to achieve a Grade 5 GCSE. We are left wondering what she could have achieved in other subjects had the school been willing to adapt and differentiate for her.
     
  4.         Most recently, I have struggled to get any sense of preparation for adulthood planning in place for my daughter, despite asking for this since 2019 and the fact she turns 18 in eight months’ time. I found that her mainstream school were ill-equipped to support a pupil with complex SEND in preparing for her next steps, for example not being able to provide us with any information about possible post-16 pathways or any careers advice for my daughter. The local offer also lacked any information and is difficult to navigate, with broken links and out of date information.
     
  5.         Social care did not want to undertake an assessment for my daughter, as they said she would not meet their criteria for respite without having even met her or undertaken any initial assessment. We were seeking a social care assessment relating to preparation for adulthood, but they undertook an assessment against their criteria for respite, which we were not seeking. They said she was not severe enough for respite so they could not help with preparation for adulthood.
     
  6.         Education, health and social care do not work together, and we were constantly passed from SEN to social care and back again when trying to secure a five-day package for my daughter for post16 as they both said they were not responsible. I was told that normally parents look after their child for 2 days a week or organise work experience.
     
  7.         Our experience is that annual review meetings centre on what is important for the process/the professionals in the meeting and are not centred on my daughter. They are scheduled at a time suitable for professionals and then we are invited to attend. Reports are never circulated two weeks in advance of the meeting, which they should be. The meetings are frequently inaccessible to my daughter, who does not understand the purpose of them and has not been supported to do so, leaving it reliant on us as her parents to ensure she has any voice at all within the process.
     
  8.         We are supporting our daughter to appeal her Education, Health and Care plan following her Annual Review in September 2021. The plan is vague and lacks specificity. It lacks preparation for adulthood provision, although this should have been provided from year 9 (she is now in year 12). The plan has no current assessment information within it, it continues to refer to out of date placement information and says that our 17-year-old daughter needs to develop play skills so has obviously not been updated. There is a distinct lack of care and attention in preparing such documentation, which we have only been able to address via a tribunal appeal. Since lodging the appeal, the local authority have arranged a range of assessments that should have been undertaken previously, a person centred planning meeting, and they are attempting to now rewrite the EHCP in a legally compliant way. We should not have had to appeal to the tribunal to achieve this outcome.
     
  9.         I am a member of our local parent carer forum. I cannot remember the last time they undertook any surveys or requested parental feedback to inform their representation in meetings with the local authority, health or other organisations. I do not know what meetings they go to, what they are saying in their representations or what impact they are making. Their role seems to frequently overlap what SEND information advice and support services should be doing (SENDIASS) as they run information events and updates. There needs to be more transparency around parental co-production, especially in terms of how the local authority is engaging with diverse voices and experiences. I do not feel that the local parent carer forum represents my views.
     
  10.         I am unaware of any young people’s co-production activity in Hampshire and my daughter has no opportunities to engage in accessible and meaningful participation.
     
  11.         I approached our local SENDIASS for support for my daughter and myself re the tribunal appeal but they said that they were unable to help me as I am advocating well, despite the fact I was seeking support from them in an unfamiliar process. See https://www.hampshiresendiass.co.uk/_files/ugd/1b2a65_a2fff6e3a32a4fc1a34411dec6754550.pdf for information.
     
  12.         I would be happy to provide more detailed information about our personal experiences if this would be helpful.

 

Feedback via parents engaged in my research – all have an EHCP
 

  1.         The parents engaged in the research I am undertaking have described how their child’s inclusion and education is dependent on the attitude and willingness of specific individuals working with their child and have reported that this cannot be taken for granted. They described how this results in them having to start again each year or when a key member of staff leaves.
     
  2.         They have reported teachers sometimes having low expectations for their child and also being inflexible about schemes of work, for instance keeping a child on a piece of work they are struggling with rather than moving them to something different, or not providing suitable differentiation to help their child access the curriculum.
     
  3.         Most of the parents engaged in my research inquiry have described how they have experienced schools and teachers who have been unwilling to include their child due to their SEND. Parents either must challenge such exclusionary approaches, which is stressful and difficult to do, or they keep looking for a more welcoming headteacher/SENCO.
     
  4.         One parent has reported that her child’s school has put him into a separate SEND classroom, which is against her wishes, and they do not let him play in the playground at break time due to the extra supervision needed.
     
  5.         Parents have described how local authorities do not meet their legal deadlines for instance notifying their decision following an Annual Review or at key transition stages (for instance not naming a secondary school by 15 February). They also discussed at length how local authorities do not respond to their calls or emails, and the difficulties they face being able to get any answer at all.
     
  6.         One child has a split placement (mainstream and special school) but the schools were not talking to each other, instead going through the parent when they wanted information from the other setting.
     
  7.         They described how their children are not automatically included in all aspects of the school, for instance breakfast club or residential trips, and one parent had to attend a residential trip to support her child’s attendance.
     
  8.         Parents have also reported having to hold professionals to account via the tribunal process or official complaints routes. This takes an incredible emotional toll on families, especially as the families engaged in the research who are progressing tribunal appeals have had their hearing dates pushed back due to increased demand on the tribunal service. This latter points of course to the increased level of tribunal appeals, of which 95% are decided in favour of the families, demonstrating the level of illegal practice parents are currently experiencing.
     
  9.         They describe how their views are disregarded by schools and local authorities, who continue to rely only on what professionals say. However, professionals do not always attend meetings, send reports late or after the meeting has been held, and make assumptions based on diagnosis rather than the individual child.
     
  10.         Parents have described the emotional toll their engagement with schools and the SEND system have taken on them, for instance lack of sleep or anxiety and how this has a knock-on effect for the rest of the family, for instance they are unable to spend time with their other children. Engaging with the SEND system is unrelenting and stressful, and parents have reported feeling powerless.
     
  11.         The PhD inquiry has not yet been written up, but I am able to provide oral evidence based on the study if required.
     

Feedback relating to family workshops delivered for Contact
 

  1.         Parents attending the workshops I deliver for Contact have rarely heard of nor been engaged in the assess-plan-do-review process, and as such are not involved in the planning process for their child’s education. SEN Support lacks detail with the SEND Code of Practice, so families are unsure what should normally be provided (for instance under the best endeavours duties or the Equality Act reasonable adjustments) and they have rarely heard of the local offer. Where parents have heard of the local offer, they find it inaccessible, out of date or lacking the information that they need. They feel that the only way to secure support is to request an Education, Health and Care Needs Assessment.
     
  2.         Families report local policy and practice that is illegal in relation to EHC needs assessments, and also report schools attempting to stop parents from applying for an assessment by either not supporting them in the process or telling them that they will not get an EHCP, or local authorities asking for evidence they meet a higher threshold or different criteria to those set out in law.
     
  3.         Parents report high levels of anxiety and stress from their interactions with professionals who do not take their views seriously, especially when parents are raising concerns about behaviours at home.
     
  4.         Families who have more diverse backgrounds (eg socio-economic status, ethnic minority groups) appear to find the system even harder to navigate than other parents. They do not always know where to get support from or even what to ask for, ie what their rights are for their child.
     

Summary comments

 

  1.         There is a wealth of evidence available to you that demonstrates that the existing legislation is not being followed either to the letter or spirit of the law. For example, the House of Commons Education Committee Special educational needs and disabilities. First Report of Session 2019 https://publications.parliament.uk/pa/cm201919/cmselect/cmeduc/20/20.pdf, the LGO report https://www.lgo.org.uk/assets/attach/5693/EHCP-2019-vfC.pdf or the significant number of Local areas that have been required to produce a Written Statement of Action. These failings of local authorities and education settings are well documented.
     
  2.         It is impossible to say whether the current legislation is the right legislation given the high level of disregard for the legislation from professionals working within SEND.
     
  3.         Co-production remains ill-defined and is often a tick box exercise, where local authorities demonstrate that they are working with a small number of parents in their local parent carer forum. However this is not meaningful co-production for the vast majority of families, who continue to experience difficulties in advocating on behalf of their child.
     
  4.         I am concerned about the proposals set out in the SEND review green paper, as they appear to use the language of co-production whilst simultaneously reducing the rights children, young people and their parents have; rights they already struggle to enforce. They seem to be proposals that aim to reduce costs by reducing the number of EHCPs and specialist placements, without actually addressing the systemic factors that lead to exclusion and poor outcomes for children and young people. There is nothing within the proposals that will address the significant culture shift that is still needed, nor increase accountability, allowing local authorities and education settings to continue to shirk their legal duties.

 

May 2022