This week a New Year dawned… traditionally a time of hope, reset, resolutions for better times to come.
For me, this holiday belongs firmly to the “Christmas break”: a frequently challenging time in my family.
We juggle the joys of autism and disability with the challenges of sensory overwhelm, eating difficulties and severe fatigue. Christmas tends to bring all those challenges to the fore.
The new year is often a time for us to recognise that we have made it through another twelve months – that one of our children has cheated death for a whole extra revolution of the earth. While they were still children, we took the time to hope and plan that all three would finally find some peace, make a little progress towards independence, maybe even a moment of happiness. Now they are young adults, our hopes have shifted a little, but we are still on a journey towards independence and happiness.
Life with disability is reliant on the help and care of others – family, community and public services. While it’s no doubt true that it “takes a village to raise a child”, disability transforms this phrase from proverb to necessity. And crucially, the support of public services is only present thanks to legal protections. Help of this kind costs money and in practice, governments only spend money where the law requires them to do so.
So for my family, for my children, threats to legal protections are far from abstract. They are the difference between life and mere survival. Tragically, I’ve known too many families for whom failures to uphold those legal protections led to real harm and even death in some cases.
This New Year’s Day brought with it the opposite of hope, in the form of a couple of news articles – publications such as The Times are not easily ignored and this piece requires a response from any of us working and living in the world of SEND. While this is asking yet more of parent carers who are already pushed to the limit, silence is too great a risk: our children’s lives and futures are in the balance.
The shocking claims made leave us in even greater uncertainty than the confusion of the last few months. They also do little to allay the concerns many of us have felt in the wake of the government’s “national conversations” about SEND reform – conversations which were as far from dialogue and consultation as it is possible to be. Parent carers up and down the country have come away from these conversations frustrated that they had no real opportunity to take part and that the Q&A sessions were too carefully curated by the organisers.
The Times article demonstrates a staggering misunderstanding of SEND and the system currently in place. I wish I had the confidence that this misunderstanding rests solely with the author. I fear instead that it extends to the highest levels of decision making, placing disabled children at severe risk of harm as a direct result.
I’ve considered three aspects of the article here, based on my experience as a parent carer to three disabled young people and working as an advocate for many other families over the past 15 years.
EHCPs to be restricted to those with the most severe and complex requirements
All three of my children needed EHCPs (education, health and care plans)… One had such glaring physical disabilities that his needs were identified in good time, and he was provided with additional support from the age of 4.
For the other two, our story is far sadder and tragically familiar. They struggled with “invisible” disability while being bright. Lack of assessment, acknowledgement and appropriate support led to catastrophic mental health breakdown, and it was only in the face of this that help finally started.
When it becomes clear that your child has significant difficulties, you are thrown into the deep end of an oceanic whirlpool, usually with no flotation device. Caseworkers, health visitors, SENCOs, social workers, forms to fill in, support to claim… there is no other choice but to learn a set of complicated rules, many of which are legal. Parent carers will be very familiar with this language and the acronyms that accompany it, but a summary of the legal document referred to by the Times article is important:
An EHCP (education, health and care plan) is the legal document referred to in the article and is the only means by which a child’s SEND are legally recognised and met with appropriate provision.
The legal framework we parent carers are so keen to see upheld requires the authorities to:
- Assess and identify special educational needs.
- Determine the special educational provision required to meet those needs.
- Deliver that provision (and review progress, need and provision annually).
Let’s start with the reality that the current legislation is not in contradiction with the article’s sentence. While the legal benchmark for an assessment of educational need is low, EHCPs are only issued to children whose “requirements” are severe and complex.
For years, public services have been stretched to breaking point. It’s a well-recognised refrain that local authorities can now only deliver their statutory duties (those enshrined in law).
In the world of SEND, this means in practice that your child will not be assessed for learning difficulty, functional life skills, coordination difficulties, speech difficulties, mental health or neurodevelopmental conditions that may impact their learning. Those families who can afford private assessments do so in the face of waiting lists measuring years.
Unless…
Unless a formal request is made for an EHC needs assessment – the first legal protection for our children. Thanks to the legal framework that kicks in at that point, this is often the first time that a child will be seen by a professional with the training and expertise to correctly identify their difficulties and the support they need.
Importantly, local authorities’ reluctance to complete a holistic assessment result in EHCPs that do not fully identify children’s needs and are often lacking in the provision that child requires in order to make the progress we could expect.
Current legislation stresses the importance of early identification and early intervention. The current government’s priorities continue to align with this. Yet resources allow only the bare minimum, and it is only with the legal protection of an EHCP that a child’s needs can be met early.
I work with families and children whose needs have increased exponentially due to a lack of early intervention. If we fail to deliver the support that is needed, we lay the path for far greater need at far greater cost.
Delivery of special educational provision follows the same pattern as the assessment of need. With resources so limited, schools cannot deliver what they know to be necessary. Unless that provision is legally required.
For decades, families have learned that the only way that their children will be given their entitlement of a free and appropriate education is with the support of a legally binding document that clearly specifies their need and the provision they require.
The SEND crisis is not one of legislative overreach – it is one of resourcing and our societal view on education and disability.
Thanks to the legal protection of their EHCPs, my children were all able to continue with their education. With the right educational support, we overcame self-harm and suicidal ideation. Thanks to that legal protection, they reached adulthood and are on the way to independence.
Without it….? There is a very real possibility that they may not be alive today.
If EHCPs are to support only the children with the most severe needs, how will those with minor or moderate needs be protected? And if parents are removed from the conversations? How can we have any confidence that they will not fall through the gaps?
Parents whose children have moderate mental health and developmental needs are set to be stripped of their legal right to certain supports
“As a parent, you know your child best”.
I have heard this refrain countless times from health professionals, teachers and social workers. When collaboration works well, it is the cornerstone of supporting a child to make progress. As a parent, I consider myself the key partner in any effort to improve their wellbeing and ability to access learning.
I can teach you how to support my child because I have been doing it for a long time, and I am the constant in their life.
As parent to autistic children, I can teach you how to communicate with them: learn the micro-signals of distress that are unique to each of them, teach you the little things that allow them to understand what you are trying to tell them.
No child is able to speak up fully for themselves, simply because they are children. Our disabled youngsters have even greater limitations and are absolutely reliant on their parents as advocates. It is profoundly concerning that any proposals should remove parents from discussions regarding their children’s education and wellbeing.
A strength of the Children and Families Act 2014 was to emphasise the importance of the child’s voice in education and particularly in terms of supporting SEND. Throughout the act and its code of practice, the importance of including the parents is a golden thread that reflects the reality of raising a disabled child.
The language used by the Times here is curious and indicative of a writer with less experience in SEND matters than might be required for such an inflammatory article. Whose legal rights are set to be stripped: the parents’ or the children?
It seems that both may be at risk, which is deeply concerning: without parents’ legal ability to request assessments or influence provision, children could be left without the advocacy they so critically depend on.
Let’s be clear: in the current system, parents do not have any legal rights to support.
They do have the legal right to request an “education, health and care needs assessment” directly from the council. This instigates the identification of need referred to earlier and triggers a right of appeal when a decision is made. The communication between parent and council throughout this process is minimal and the school is already heavily involved.
Only parents whose children have been issued an EHCP (therefore, those with the most severe complex requirements) have a “case officer” and have some communication with the council.
The article does not suggest that parents of children with EHCPs would lose these rights…. Yet it is difficult to see what benefit would be reaped by preventing parents from requesting a needs assessment.
While parents do not have legal rights to support, they have the right to request assessment. They also have the right to state a preference for the school or setting of their choice. Historically, legislation emphasises the importance of children being educated in accordance with their parents’ wishes.
Once more, this speculative article suggests the government may rewrite legislation in ways that threaten principles of independence and autonomy — principles I consider central to British values.
The Times article claims the rise in EHCPs has been driven by increasing numbers of children diagnosed with autism and ADHD.
This is a bold claim indeed and mirrors a worrying trend that has led to a recent review in the NHS of diagnostic rates for mental health and neurodevelopmental conditions. As a small aside from me, I believe strongly that the two issues should absolutely not be conflated. Research already suggests that rates of ASD and ADHD are significantly under-diagnosed.
Importantly, an EHCP does not depend on a diagnosis. It is issued when a child’s special educational needs have been identified by qualified professionals as requiring a level of special educational provision beyond what a mainstream school can offer.
Many (most) children with autism and ADHD do not have EHCPs and are supported in mainstream schools with or without additional support provided by their school. Those who do have an EHCP are children with the most complex and severe needs.
The author of the article does not explain that many children with severe and complex needs have more recently received a diagnosis of autism or ADHD in addition to other needs such as learning disability. This reflects better understanding of neurodevelopmental conditions and has allowed specialist schools to better meet these children’s needs – it has also shifted the statistics quoted in the article.
A similar shift has happened in the designation of specialist schools: those that were once for children with learning difficulties or learning disabilities, are now labelled as focussing on children with autism. The children themselves are the same!
My daughter’s school was originally a school for “vulnerable and sensitive children”. While she was a pupil, it changed to become a school for “autistic children”. This reflected a better understanding of autism (particularly in girls) and allowed the school to make a clearer offer of provision…
Questionable public spending linked to EHCPs
The author writes with dripping condescension of money being frivolously spent – on 1:1 sessions rather than a teaching assistant providing support for several children and on activities such as skiing lessons, falconry and equine-facilitated learning. No detail is given about the frequency of these activities, the reasoning for them or how they support children with SEND.
Parents of disabled children will easily explain the difference between 1:1 support and what a teaching assistant can provide in a mainstream classroom. Those whose children require different learning opportunities, including animal-assisted therapy and learning will explain how that support leads to academic progress and importantly teaches them the crucial life skills that will give them the best chance at independent adult life.
Importantly, local authorities are meticulous about justifying SEND expenditure – and provision is determined by qualified professionals. This is an evidence-driven system at every stage. Parents, schools and professionals are challenged at every turn to ensure that taxpayers’ money is not unduly spent, a fact notably absent from this and many reports on SEND.
How can we protect our children’s right?
Right now, the law is the law. For families navigating the SEND system today, tomorrow and until things change, the next steps remain the same as they were yesterday. The Children and Families Act 2014 describes how schools and local authorities must support children with SEND. The SEND tribunal continues to afford families the right of appeal where they do not agree with a council’s decision.
Thanks to their EHCPs, my children have grown to adulthood. Their different stories reflect their different needs but demonstrate the importance of these legal rights:
My eldest received specialist support that allowed him to recover from severe behavioural difficulties, learn critical social skills and develop strong family ties. Without the specialist educational setting he required, we would have experienced complete family breakdown, and he would be in long term social care housing. Ongoing legal rights support his journey to independence with the understanding that it is a longer journey than most!
My second child was severely traumatised in mainstream primary school. Her EHCP ensured that she attended a suitable school where she began a journey of recovery, while continuing her learning. It was too late, but with the support of her legal rights, we were able to manage a subsequent breakdown with alternative education that allowed her to find her way into adulthood. She is now married with two young children for whom she advocates with admirable strength and knowledge.
My youngest received his EHCP at 4 years old. Thanks to that legal support, he remained in mainstream school until he was 9 years old. Thanks to that legal support he then joined a school in which he was finally not the only wheelchair user, and learned what it means to belong and succeed. Thanks to that legal support, he changed school to find his “niche” – the middle ground that is so rare for “square pegs”. Thanks to his legal rights, he embarked on a supported internship at 18 years old and has been employed by his placement ever since. As a result, he has a chance at independence in adulthood.
In my work, I will continue to support strong, collaborative relationships between families and schools as well as local authority officers because coproduction and collaboration so often result in the best decision for a child.
In parallel, it will be critical for all of us working in this world of SEND to ensure that decision makers and law makers understand the true consequences of their actions.
As parent carers, we need to counter the negative and discriminatory picture being portrayed of our children by sharing our real stories. A good place to start is “Save our Children’s Rights”. Following such organisations as Special Needs Jungle, IPSEA, Contact, and many others will give you up to date information about the nature of the upcoming white paper and what you can do in the face of potentially dramatic changes in the services available to support your child.
Each local authority has a parent carer forum whose purpose is to gather parent carer views and work with local authorities to improve services for disabled children. They in turn pass those views on to the National Network of Parent Carer Forums. The NNPCF is far quieter on these matters than I had hoped, but I would absolutely urge parent carers to contact their PCF, share your views on these proposals and request that they be passed on to the NNPCF.
Change is rarely achieved as a result of one strategy; now more than ever, every opportunity to make our voices—and those of our children—heard must be seized.
Our children face a life full of challenge as a result of disability.
History tells us that education is key to better lives for all children. Our children are no exception.
History also reminds us that equality and equity are two very different things: legal rights ensure equity for children with SEND.
In England, we are fortunate to have been championed by past parents and past disabled adults. Thanks to them we reached an understanding in legislation that every child is entitled to a suitable education: one which meets their individual needs to allow them to make the best progress possible and reach the best outcomes in life. And when we make equity a reality, people thrive beyond the barriers placed on them by disability. I cling fiercely to the hope that we still believe this.
The only way to ensure equity, to ensure that our disabled children have the chance of a fulfilled life is to maintain the legal rights enshrined in the Children and Families Act 2014 – which can fundamentally be summarised as a right for their needs to be identified and met.
Tugboat SEND Navigation 