My Lords, I declare my interests as a vice-president of the Local Government Association and as a former chair of governors of Mayfield Primary School in Cambridge, which at that time had the hearing impaired unit for southern Cambridgeshire.
The noble Lord, Lord Hunt, introduced his Amendment 97 on arrangements for funding for specialist SEND services for children and young people with sensory impairment. I completely support it. I have heard very recently of a profoundly deaf child, the only one in his mainstream primary school, who has access to a deaf teacher for just one afternoon a week. That is not inclusive education.
The Secretary of State must give local authorities the right level of funds, in this case through the high-needs block, so that they can deliver the support that SEND children need. This is the key to the
current SEND issue: the money does not get to the local authority so the local authority cannot follow the child and the child’s needs; this probably explains many of the problems that we are discussing in this group.
Amendment 99 adds to Clause 48 that the details of any SEN or disability that a child has need to be listed; I support that too. I also support the amendments in this group in the name of the noble Lord, Lord Holmes of Richmond, who set out so eloquently the further protections needed for pupils with SEND. Amendment 163 at last demands a strategy to close the education attainment gap for young people with SEND.
Last Friday I attended a webinar run by the Disabled Children’s Partnership, at which parents recounted many of the problems they are facing in getting the right level of support; or worse—as in the case of one parent of a child with multiple physical disabilities but who was intellectually on a par with his peer age group. The only school available to manage the former issue could not teach him at his chronological age; every other child in that school also had learning difficulties.
Even worse, Oskar Nash and Sammy Alban-Stanley, two disabled teenagers with complex medical needs, both died after their school and LA failed in their duty to follow their care plans. Their families had pleaded for support in helping them to cope with the boys’ disabilities. Sammy’s mother told us at the webinar how exhausting it had been to constantly have to fight for the support he needed. CAMHS had recommended a care education and treatment review, but it was not actioned before his death. Oskar Nash was moved from a special school to a mainstream school without further review of his EHCP. Despite urgent referrals to CAMHS, which passed him on to an external counselling service without any clinical assessment, at the time of his death his local authority, Surrey County Council, had not done an assessment of his needs. Coroners in both these cases are extremely concerned about the boys’ deaths and have written recently to Mr Zahawi, Mr Javid and the local education and healthcare bodies involved.
I have worked with families with disabled children for years. These cases are the tip of the iceberg. The system is broken. Children are dying and children are being let down. While many of the amendments relating to Part 4 of the Bill relate to the concerns of parents who have chosen to home-educate their children, I want to focus in this group on a number of different groups of pupils who do not wish to be out of school but who face difficulties, either with their needs not being met or who have medical conditions that mean they are out of school. They broadly fall into the category of school being an unsafe place for them either without medical advice being followed or, for some, without reasonable adjustments that would have made school safe for them.
Almost universally, all these affected children are getting no alternative provision at all. They include pupils so severely bullied that they are waiting for mental health appointments but cannot face school until they get help. There are also pupils who are
young carers known to their local authorities, who are doing a full-time job caring for a parent or other family member and are emotionally and physically exhausted. There are pupils with complex medical needs, with clinical requirements that are not being followed by the school. There are pupils who are either immunosuppressed or immunocompromised, whose doctors say that special arrangements should be made for them in school; otherwise, they are at risk of catching illnesses—such as, but not only, Covid—which might kill them.
Dr Lee-Anne Kohli’s son Kieran is clinically extremely vulnerable. His paediatric cardiologists requested remote learning for both of her children. This was agreed until Department for Education policy changed. From September 2020, the school enforced new government policy that every child must attend school. When the school threatened fines and prosecution for persistent absences and recommended to the parents that the child be off-rolled, the parents eventually did this. Children such as Kieran should have access to remote exams but most exam centres do not permit remote exams. The parents say that, if a school attendance order were enforced against them, the children would have no option but to relocate overseas to live with their father as UK schools are not safe for their child; the hospital doctor says so too.
“Child EA” is due to start primary school this autumn. Both she and her mother have primary immunodeficiencies and her father is also clinically vulnerable. The family are acutely aware of the issues faced by high-risk families. Both parents have been supported by their employers to work from home. All their child needs to be able to go to school is a HEPA filter to be installed at the school, but the school will not do that. Currently, these parents are considering delaying their decision until their child reaches compulsory school age. They face having to educate her at home alongside her attending a private forest school to allow her to socialise outdoors if there is no HEPA filter in the primary school.
There is one thing that many parents from this group share: they are already being fined for their child being out of school because currently schools have the right to ignore professional medical advice or the advice of other experts such as social workers. This is because the statutory guidance for schools on pupils with medical conditions has been diluted away from its original intentions. It cannot be right for parents to be fined if their child’s safety or needs are not being met in school and where an expert says that, until their safety is assured or their needs are met, the school should make alternative provision for them. Parents are being fined now despite their children being ill. Clauses 48 and 49 will make this much worse, especially if Ministers, local authorities and head teachers are able to decide what is and is not medical, contradicting the advice of professional doctors.
There is a way to remedy all this. Section 100 of the Children and Families Act says:
“The appropriate authority for a school to which this section applies must make arrangements for supporting pupils at the school with medical conditions … In meeting the duty in subsection (1) the appropriate authority must have regard to guidance issued by the Secretary of State.”
The statutory guidance published in 2014 after the Secretary of State worked with schools, parents, medical charities and Peers, including myself, stated clearly:
“The aim is to ensure that all children with medical conditions, in terms of both physical and mental health, are properly supported in school so that they can play a full and active role in school life, remain healthy and achieve their academic potential.”
It further said:
“Governing bodies should ensure that the school’s policy is explicit about what practice is not acceptable”,
including ignoring “medical evidence or opinion” and penalising
“children for their attendance record if their absences are related to their medical condition.”
That guidance also states how schools, local authorities, doctors, parents and the children themselves should together create a healthcare plan for these children that sets out how best the child’s medical needs can be met. As I have said at earlier stages of this Bill, unfortunately this statutory guidance was changed in 2017, with no consultation with medical charities or parents, to remove the statutory elements about schools having to work with, and not ignore, medical advice.
Page five of the new guidance talks about schools having to follow the duty under the Equality Act for disabled children, but not all children with medical conditions are classified as disabled. Worse, some of the excellent parts of the previous version are now reduced in strength to being merely “further advice”, including working with medical practitioners who know the child.
At the webinar on Friday, I heard about a six year-old child with type 1 insulin-dependent and complex diabetes, ASD, sensory processing disorder, Pica, communication difficulties, severe anxieties and more who has not yet attended school. Nursery consisted of one and a half hours per day and was very inconsistent. Nursery staff were said to be trained in diabetes, but mum was called on a daily basis to check her son’s dropping levels. The family recently attended a SEND tribunal. The tribunal judge found that a SEN school with no medically trained staff or qualified nurse on site can meet need against parental choice of a non-maintained special school. The problem is that the tribunal decision was made of the grounds of the best use of resources, even though the parents argued, “How on earth can you put a price on his life?” The actual effect of that decision is that it is dangerous for the child to be left in school without experienced staff who understand the child’s diabetes properly. I have laid my amendment to make sure that we go back to a previous version, where medical advice is followed for these children.