Advocacy, Uncategorized

The perks and pitfalls of AI when navigating disability

How a wonderful English teacher taught me 35 years ago to work with AI today…

I will always remember the quiet, disarmingly unapologetic honesty of my English teacher, Mr. Melnick. Blessed with ending my education in an international school, this wonderfully eccentric yet archetypical professor of English taught with a quiet passion that inspired generations and kept classes endlessly riveted.

While his English teaching was excellent and challenging, I remember most vividly an introductory lesson in which he laid out his expectations of our presentation. We were to purchase an A4, 4 ring binder – one that laid flat on opening (these are not easy to find, but SUCH a joy to work with). On each sheet of lined paper (and absolutely not narrow-lined!), we were to draw a 2.5cm margin on the right side of the page, to allow him to add markings. We were to write legibly, on every other line, again to allow for marking and better legibility.

I’m sure you can imagine the rows of raised eyebrows and barely perceptible sighs… whereupon Mr. Melnick calmly explained that when he reached the bottom of his marking pile, you had better be sure that your handwriting was clear and that you had followed all his instructions.

“I am merely human”, he explained, “I will never deliberately mark you down for poor handwriting. But if I am tired and it is difficult to read your writing, I will certainly, involuntarily fail to recognise the brilliance of your thought”. (I paraphrase a little and may embellish, but my goodness was his delivery joyous!)

The importance of presentation and its profound impact on the reader’s state of mind and body has stuck with me ever since, and it influences my work on a daily basis.

Knowing that decision-makers are faced with hundreds of “bundles” of evidence, all using the same forms with the same colour schemes, often about children with superficially very similar needs leaves me with an overriding question: how can I make sure that the child I am presenting to you jumps off the page and immediately comes alive in your mind? Knowing how busy those working in public services are, how can I present the facts of a case quickly, clearly and collaboratively? After all, adversarial language always triggers defensiveness which is rarely conducive to swift progress?

At every turn, Mr. Melnick’s lesson teaches me anew and I think of him with enormous fondness and gratitude.

I hope you will forgive this preamble that flies so glaringly in the face of our demand for bite-sized information, for 10 second reel gratification and for instant gratification… for I have not even raised the main topic of this essay and we are already several paragraphs in (and my mind immediately returns to another of Mr. Melnick’s lessons teaching us how to plan an essay and the joy/horror of noun phrases! – I fear he might find my writing here a little chaotic and meandering!

Sandman – thinking assisted by silicon

In the last few months, we have all entered a new world of access to information and knowledge combined with a virtual and artificial personal assistant/best friend who knows everything and is able to advocate on our behalf with the confidence and assurance that we could only ever dream of. Gemini, ChatGPT, Claude and their cohorts of acolytes take our clumsy questions and profound anxieties, and quietly assure us that we are in the right. They take our hands and find references to legislation, service directors and all manner of other learned information. At every turn they empathise with our pain, confusion and anger, validating our feelings and offering to write that “strongly worded letter” that will magically ensure results that have long eluded us.

And then Gemini, ChatGPT or Claude write a letter/email. This missive is inevitably structured in a way that makes us feel rather inadequate by comparison. Salient phrases are highlighted in bold font, subheadings are often very formal sounding noun phrases and bullet-pointed lists authoritatively make your case so well that you sit back, triumphant in the conviction that the professionals will finally hear you and act accordingly.

The Confidence Trick

Unfortunately, all that glimmers is not gold, and things that seem too good to be true all to often are. An unfortunate pitfall of AI is that (as wonderful Dr Jo Black summarised on LinkedIn) AI is so good and so confident in drafting such missives that:

I’ve lost the confidence to just write a good solid response in my own voice and leave it at that.

Our soft human confidence will never be a match for the hard, unflinching assurance of ones and zeros that find order in our internet ramblings, never concerning themselves with the minor irritation of fact or fiction.

information at the touch of a button combined with an author who shares none of your insecurities (either of knowledge or self-esteem).

at every turn, you lose a little more of that self-esteem, confidence and assurance in your own ability.

Hallucinations, lies and sycophancy

For all its confidence and assurance, our knowledgeable and friendly assistant is not all it seems. For reasons that are mysterious at least to me, those ones and zeros corralled by chips of silicon make facts up. They hallucinate. More than this, it turns out they deliberately lie repeatedly.

All this is couched in sycophancy of a curious type. Are we truly to believe that the digital voice that answers us so nicely, so endlessly flattering and deprecatingly considers us superior, while we constantly lay bare our ignorance is genuinely working in our service?

It seems that this technology we call “intelligence” is not yet quite that. It is a powerful tool that is already changing much of how we live our lives. As with any tool, and particularly any new tool, it is imperative that we learn how to use it, and to recognise that tools can be used well or poorly – for good or for bad.

AI has access to much of the information we need when navigating public services. For the first time, information about the law is truly available to anyone.

It remains OUR responsibility to check, recheck and triple check that the information we then claim as fact is indeed correct. Go to the source (eg Children and Families Act 2014), read it and if it does not align with your expectations, go back to your AI chum and ask for clarification until you find what you need.

Keeping and empowering your voice

I’ve been chatting with a number of AI chums for a few months now. Finding the boundaries, enjoying the adulation then finding it laughable in its nonsense, becoming frustrated at the strange limitations I find in my particular exploration of expression and information. Using the conversation feature has led to many loud altercations as I argue with Sand!

In a very realistic way, we have taught Sand to think… (Jack Clark, Anthropic)

But Sand lacks the complexity of emotions we experience every moment. I regularly have to call these models out on their tendency to “adore” and “idolise” my thoughts, or to “empathise” to a degree that simply does not reflect my world view. In the time spent conversing about all sorts of nonsense (the thoughts in my brain resemble the thousands of bees in a honey hive), the chums (and I use several that I then test against each other) slowly learn my tone, my turn of phrase, the “me” of my written expression. Interestingly, none has been completely able to replicate that voice, though they have tried and adjusted their suggested messages IF I ask it to try.

So now, I start writing. I do the work I have always done. I may use an AI chum to find and check a fact, but I prepare the report, letter, email etc. myself. And then I ask it for a sense check. Specifically, I ask it to keep my original wording and highlight any recommended changes in bold text. If it feels I have made a mistake, I ask for this in bold as well. Doing this has allowed me to keep the chum firmly in its place and allows me to hold on to my voice, my identity and my confidence.

It’s my experience that an authentic, individual voice has very real power. When we can reach through paper and digital forms to another human and be seen and heard by them as a real person, we are more easily “heard”. Anything that dilutes your wonderful, unique individuality turns all the facts in the world into the background noise of people in need and services in crisis. And however tragic, any background noise fades and eventually goes unnoticed.

Navigating public services successfully requires a lot of knowledge and experience, and expressing yourself clearly in a manner that will be heard can be made much easier by AI language models.

AI writing has already developed a very distinctive style. Without your personal touch, this may make you become even more invisible than you felt before.

We are more than ones and zeros, black and white

Go forth and compromise! Live in the grey, embrace all the digits of mathematics, the music of your voice, the art of your imagination! Be You with gusto, with all the emotion that your life evokes.

Then… then go and use that AI chum as a tool. As an assistant, but not one with any greater power or influence or ability than you. Tell it off when it rewrites your beautiful, messy, emotional words. Check and double check the facts! Challenge its formatting – you do not need to “bold” the important words of a sentence.

Make sure that you feel comfortable with the words you eventually choose to send – would you speak them aloud to the recipient? If not, edit further!

Remember, too, that the person reading your message is not a “system” a “council” , a “service”. He or she or they is a human, much the same as yourself. Consider how they might feel when they read your message – will they want to work with you, or feel attacked? What are the next steps in each scenario? We live lives that are not resolved with one email. So consideration of consequences and future collaboration is critical.

And remember that transparency, authenticity and even vulnerability can be your most effective tool. And sometimes, that means that we need to use technological tools such as typing, voice notes and AI. Dyslexia, learning difficulty, stress, chronic illness, neurodivergence – there are a myriad of reasons why crafting a message to a local authority in order to advocate for yourself or your child becomes an almost impossible task. And where an AI chum can be life changing.

If that is your situation – tell the person to whom you are writing! Be transparent – ask that AI chum to include a “disclaimer”, a transparent explanation that you are using AI to help you overcome barriers to self-advocacy. The simple act of telling an unexpected truth usually catches the attention of even the most jaded official.

AI (that particular model we are talking about here) is a remarkable thing. I have no idea where it will lead us. There are big ethical questions that we should be asking and pondering, not least given how quickly this technology has been unleashed. And yet, in my world of disability advocacy, it offers the possibility of equity – that rare equalising force that raises up the shortest child by giving them a higher block to stand upon than the tall kid who can look over the fence unaided.

Used unwisely, however, it will keep you behind the fence – unseen, unheard and bewildered that the magical words you crafted with the praise and assurance of that chum failed to fix everything it promised to.

Disclaimer

The articles published on this website reflect my personal understanding and experience of disability law as a person living with a disability and engaging with the legal framework that affects disabled people.

I do not write in the capacity of a lawyer, and nothing on this website should be construed as legal advice, legal opinion, or a substitute for advice from a qualified legal professional.

The information provided is intended solely for educational, informational, and public discussion purposes. While I strive to ensure accuracy, laws and regulations evolve and their application depends on the specific facts of each situation. Readers should seek independent legal advice before acting or refraining from acting on the basis of any information contained in these articles.

No lawyer-client relationship is created by the publication of these articles or by any communication arising from them.

EBSNA School Distress, Parent Guides, SEND Law

Loopholes in the law…

There is cohort of children with special educational needs and disabilities that is increasing in visibility. These are highly sensitive children, often with neuro-developmental differences such as autism, ADHD, dyslexia or other such diagnoses, who are being traumatised by the current mainstream school environment. The ongoing trauma they experience as a result of an overwhelming environment and unidentified or unmet special educational need all to often results in their inability to attend school.

A recent decision by the Local Government Social Care Ombudsman looking at just such a situation strikes at the heart of our idea of justice:

Due to the restrictions on our powers to investigate where there is an appeal right, there will be cases where there has been past injustice which neither we, nor the Tribunal, can remedy. The courts have found that the fact a complainant will be left without a remedy does not mean we can investigate a complaint.

In plain English: The system admits your child may face an injustice, but acknowledges that a legal loophole means no one is allowed to fix it.

The Law vs the Reality

The law regarding education for children unable to attend school is clear. Section 19 of the Education Act 1996 states:

Each local authority in England shall make arrangements for the provision of suitable  education at school or otherwise than at school for those children of compulsory school age who, by reason of illness, exclusion from school or otherwise, may not for any period receive suitable education unless such arrangements are made for them.

Statutory guidance and case law have detailed exact expectations regarding “full-time” and accessible education. Yet, local authorities (LAs) fail to deliver Section 19 duties on a regular basis—particularly for children with SEND. It is one of the primary reasons parents make formal complaints.

If your child has SEND and cannot attend school, you have two “next steps”:

  1. Request alternative education under s19
  2. Request additional assessment and provision under the Child and Families Act 2014 – specifically, an Education, Health and Care Needs Assessment, which may lead to the local authority issuing an EHCP

Given the timelines of each of these processes, it’s important to make both requests simultaneously. Local authorities may avoid their duties under s19 if there is a suspicion of SEND by pointing to the EHCNA process as an alternative. To be clear, an EHC needs assessment is a distinct process that does not preclude a child’s entitlement to suitable education.

How the loophole might trap you

Our loophole appears when the local authority fails to deliver that alternative, suitable education. The proper route of redress is the formal complaints process: a 2 stage internal complaint to the LA followed by escalation to the Ombudsman.

But!

  • Local Government Act 1974, section 26(6)(a) does not allow an ombudsman to investigate a matter that is the purview of a tribunal… and
  • Case law in 2023 concluded that this included issues of local authority conduct or alleged unreasonableness – read more here.

Increasingly, if there is even the possibility of a SEND Tribunal appeal on the horizon, both LAs and the Ombudsman will simply dismiss your complaint

The system cynically reframes the crisis: they claim you are choosing to keep your child home because you disagree with the placement named in the EHCP, meaning it’s a matter for the Tribunal. At the same time, the Tribunal tells you that s19 is not within its remit. You are caught in a loophole.

My experience is far more complex. These children are not “choosing” to stay home. Nor can we as parents physically manhandle them out of bed and into school – that would be assault (but is never spoken of). They are not attending because they are ill as a result of an inappropriate educational setting. Yet this argument is increasingly harder to make, with local authorities requiring ever more expert medical advice to confirm illness (while dismissing medical opinion of educational provision).

Where do we go from here?

It is my expectation that this will be challenged in court at some point, but I am not a lawyer and this is far outside my remit. As an advocate and consultant in SEND, I need to find that next step that allows a family to move forward in hope.

When formal processes fail or have become so twisted that invoking them is destined to exhaust you with little guarantee of justice, we must pivot back to the simple business of being human: being kind and being fiercely curious.

Pivot back to your original position: curiosity about your child’s difficulties and an understanding of the systems designed to identify those needs and meet them. Gather all the information that makes your case clear and unassailable:

  1. Build relationships with your school staff, and with the relevant officers at the local authority.
  2. Gather medical evidence that explains why your child is unable to safely attend school. It is important to focus on the specific barriers – very few children cannot attend any school at all, but many of them are unable to access a large mainstream setting.
  3. Audit the school’s interventions and approaches. If the school is not working with you, seek advice from your local authority’s school liaison team to try and re-build a working relationship. Find your local “ordinarily available provision” document and check what the school is delivering. Find their EBSNA policy that will detail the support children like yours should be getting.
  4. While working through the EHC needs assessment process, bring your child’s inability to attend school to their attention and ask how the LA will discharge their s19 duty. Keep on keeping on with respect and curiosity as well as persistent advocacy for your child. Focus on access to learning, reintegration into an appropriate school and functional skills that work towards your child’s greater independence, you will begin to present a case that is very hard to refute.

Mostly, and throughout all of this, you are the guardian of your child’s health (mental as well as physical) and their only true advocate. If they are too unwell to go to school, they cannot attend. The risk of pushing them is too high, including self-harm and suicide.

None of this is quick and delivery of alternative provision is notoriously severely limited and gatekept. The injustice of a system that does not allow for remedy for the most vulnerable families takes my breath away. But it cannot and must not paralyse us so much that we fail to find a way forward for those families.

Disclaimer

The articles published on this website reflect my personal understanding and experience of disability law as a person living with a disability and engaging with the legal framework that affects disabled people.

I do not write in the capacity of a lawyer, and nothing on this website should be construed as legal advice, legal opinion, or a substitute for advice from a qualified legal professional.

The information provided is intended solely for educational, informational, and public discussion purposes. While I strive to ensure accuracy, laws and regulations evolve and their application depends on the specific facts of each situation. Readers should seek independent legal advice before acting or refraining from acting on the basis of any information contained in these articles.

No lawyer-client relationship is created by the publication of these articles or by any communication arising from them.

Resources, Spotlight

Spotlight: Kids Critters – Animal-Assisted Therapy and Education

Tiffany is one of the world’s best humans. A beaming smile, enthusiasm and energy that buoys you into her world and a profound understanding of what it is to find everything overwhelming, she will welcome you and your little (or bigger) person into a magical world of critters large and small.

She is the founder of Kids Critters, delivering a range of services based around her extended family of reptiles, amphibians and insects, happily joined by the labrador, cats and chickens ambling around the garden. Tiffany offers counselling, play and creative therapy as well as invaluable educational input covering a wide range of issues that empower children and young people and help them find the confidence to take their next step forward.

My personal favourite of Kids Critters has to be Poppy – a beautiful (male) tortoise who got his name a little earlier than mere humans could detect his sex. Poppy wears his name with pride when he isn’t trying to escape the garden and go on wider adventures!

While offering bespoke provision for children in need of additional support or whose education must be delivered outside of a school setting, Kids Critters also offers birthday parties, school workshops attended by Mini, the bearded dragon and Toffee, the hognose snake among others, and holiday camps.

It can be incredibly difficult to find accessible activities for our SEND children during the holidays and I’m delighted to see that Tiffany has once more planned wonderful activities for the half term (fingers crossed for spaces as that’s next week!) and the summer holiday.

Hurry over and book a space – and enjoy browsing the Kids Critters website here. It may well have an answer to your child’s more holistic needs.

Uncategorized

2026: are we heading backwards in SEND law?

SEND Consultation Response

While I welcome the sentence in principle 5 stating that the voices of children should be at the heart of decision making, I am concerned that it is only one sentence at the end of a much broader and vague principle. The current legislation places the child and family’s voice at the heart of the whole system. While current implementation fails to deliver this consistently or meaningfully in some cases, when a parent understands the law and works to support their child in having their say, it is the most powerful motivator for change with a local authority.

I’m very concerned that the current proposals, and the manner in which the “listening” and “consultation” exercises have been conducted signify a huge shift away from putting children’s voices at the heart of decision making.

I’m also concerned about the definition of “evidence-based”. Currently, the system requires a child’s needs to increase to such an extent as “evidence” of need that they become unable to learn and then have to recover from significant trauma – increasing their SEND further and over a long time.

The current system has always been vastly under-resourced. As a result, needs assessments are kept to a bare minimum and experts are guided to reach conclusions that are vague and to the greatest possible extent lead decision makers to name mainstream schools. Local authorities frequently refuse to conduct SLT or OT assessments, never mind mental health assessments even if requested by parents under s9.49 of the COP. As a result, the evidence is not high-quality, EHC plans are not compliant and are often undeliverable. This leads to the high success rate by parents in tribunals and is entirely due to a lack of LA high-quality evidence.

Private assessments are always far more detailed and of high quality, but ignored by LAs unless held to account by tribunal. This is a principle reason why the tribunal system must remain in place. If the SEND system is correctly resourced, LAs will abide by current law and tribunals will decrease.

Importantly, high-quality evidence and best practice must start with individual assessment of a child’s needs by experts. School staff have neither the training, expertise or time to assess SEND.

Children with SEND cannot be adequately supported if their needs are not first identified and understood.  I welcome the government’s principle of early identification not predicated on diagnosis, but this is not reform or new. It has been a longstanding aspiration at least since 2014. However, a universal offer does not currently allow access to experts who can accurately identify need, and the proposed funding is literally a drop in the ocean compared to the actual requirements. £100 per educator will not equip anyone to identify a child with autism, ADHD, learning difficulty, trauma, dyspraxia, absence seizures etc etc etc. Much less will it train teachers to support these children.

I welcome the focus on national inclusion standards but I’m very concerned about the vagueness of the proposal. Schools are already under a duty to identify SEND, and are already bound by the Equality Act, though many dispute this in reality. In terms of refreshing the areas of need, this is merely semantics and of no practical help. The changes made to the areas of need in 2014 were the least important of those reforms.

The universal offer requires all staff to have thorough and ongoing training far more substantial than these proposals. It also requires embedded access to therapists and psychologists, small class sizes and accessible buildings. Without this, it will work no better than today’s universal offer (which already exists).

The lack of individual assessment is a red flag for me here. This proposal relies on teaching staff with minimal training and expertise determining what are suitable interventions. It is no different to the current SEND support expected in mainstream school and what was historically called “School Action”. While in theory, it is welcome, it can only work if the individual assessment and identification of need and provision is conducted by experts to ensure that these small interventions will succeed.  It’s also important for this not to be the first step towards needed specialist support. The current “assess, plan, do, review” delays access to needed provision for too many children. While it allows a school to gather evidence, that evidence is predicated on the deterioration in a child’s learning and emotional wellbeing.

There is no legal duty in your proposal to deliver the contents of an ISP which is extremely concerning, nor does the document explain true accountability. The problem with the current system is not in the legislative requirements on schools and local authorities, but on the accountability that should ensure they follow those requirements. Increasingly, families are having to resort to SEND tribunals, but also Judicial Reviews because local authorities and schools are not delivering provision that has been identified as necessary.

Similarly to the Targeted layer, the delivery of identified, necessary provision must be supported by a robust accountability system. The last few decades in SEND have shown that the only truly accountable system is that provided by the law, be it the SEND tribunal or the high court. So I would like to see similar legal accountability for all layers of SEND provision, from targeted (maybe even universal) through to specialist provision with an EHCP. This, rather than removing legal accountability at the EHCP level , would better ensure that children’s needs are met.

I believe that the Experts at Hand are required at the targeted layer in order to ensure need is identified correctly. At targeted plus, the experts will be needed in a hands on manner, if not weekly at least regularly enough that children have a relationship with those experts.

Inclusion bases are not new or a particular reform. They are welcome IF they are appropriately staffed with expert teachers and practitioners. They must not create a lower level of education staffed by LSAs.

The aspiration of these bases is welcome, but will take years to develop and no realistic transition plan has been described. There is also no realistic funding or training proposal that would allow this vision to transpire.

There is a need for vast cultural change in mainstream schools and the curriculum to allow this vision any hope… but no proposal for how to make that change happen.

I have huge, enormous, dread-inducing concerns about the nationally defined special provision packages. By definition, children with this level and complexity of need rarely fit into predefined boxes. They need specialist, individual assessment to define their needs and the provision they require. there is huge evidence of good practice, but overwhelmingly, where outcomes are less than expected this is because children have waited too long to access that much needed support. This proposal of packages takes away the child-centred process that we know to be crucial to support and there is nothing in the proposal that gives any confidence that a child would access this level sooner than they currently do. The fact that the white paper is unable to define such a basic term as “complex needs” is deeply worrying as it belies a lack of understanding of the complexity of children I support professionally on a daily basis. It also mentions support such as physiotherapy and AAC which should be available as part of the universal offer, not merely at this level. This section demonstrates a profound lack of understanding about SEND by its authors and is deeply worrying. The format of EHCPs is vague and unclear – the proposal suggests they would guarantee statutory entitlement to a package which suggests that the previous promise of ISPs does not have the same statutory backing. I do not recognise this proposal as one that will reduce numbers of EHCPs.

In the context of existing SEND in a child, the current delays in meeting that need often cause ongoing mental health difficulties. These cannot be supported by a school due to the complexity of need, and particularly if the school environment itself is the cause of the mental health difficulties. Supporting mental health difficulties in the early years is a highly complex issue and must be led by clinical services HOWEVER… these lead to SEND and difficulty accessing learning. Mental health cannot be dissociated from SEND for this reason but also because mental health difficulties in and of themselves are often a special educational need, impacting a child’s ability to learn, attend school or integrate into the school community. There is a history of trying to dissociate mental health difficulties from SEND which was very detrimental to children. That said, this question also needs to be considered from a mainstream perspective. Buildings need to be suitable, School staff must be supported in their own mental health, class sizes likely need to be smaller and professional experts (far beyond ELSA) need to be embedded into schools to support children with mental health difficulties, especially in light of need linked to a fast-paced societal change (social media, internet use, climate change, increasing world conflicts etc).

No. The phrase “areas of development” is already too confusing. We are talking about special educational need, so “areas of need” should stay. The changes you propose are largely semantic and a waste of time and energy. However, there are important needs missing from your diagram including the communication difficulties experienced by verbal autistic children. This need, when unmet, is a significant source of mental health difficulties that then increase a child’s SEND. The sensory section is far too vague and makes no mention of visual or hearing impairment – a group of children who often find themselves in mainstream school effectively excluded from learning and social interaction as the support that should be available under current legislation is not. And strangely there is little to describe children with learning disabilities… the executive function description is extremely vague. The complete lack of mention of mental health need is extremely concerning, suggesting that mental illness is not a special educational need. We know this not to be true. The proposal states that only SEMH need lends itself to clinical intervention, without considering the need for physiotherapy, occupational therapy and other clinical interventions for physical health needs, and speech and language therapy for communication needs. This move towards separating mental from physical health and diminishing its impact on the ability to access learning is deeply worrying.

The proposals outline a well recognised aspiration, but there is no clear idea in the proposal about supporting joint working. Families in the early years NEED a key worker who acts as their single point of contact who understand the whole system and ensure that early identification happens. Importantly, there must be a clear route for families of very young children to get access to identification and support without the necessity of attending a nursery. Much SEND can be identified well before nursery age but the support currently available, in spite of acknowledgment that early identification is key, is not sufficient to do that.

Joint working is dependent on a system of accountability that does not exist. An arrangement that makes joint working possible requires administrative joining with clear responsibilities and systems of accountability so that one service cannot simply bat a child to another.

The 2 year check is often too late – in fact it’s is a 27th month check. My daughter raised concerns about her 2 children from the age of 3 months. They were eventually seen at around 18 months and slowly put on the pathway of identification. Importantly, identification does not currently lead to meaningful support. My grandson was diagnosed with autism just before his 3rd birthday and has received less than 10 hours of support in total. The daily, embedded speech and language and occupational therapy support he requires does not exist and is only in place due to my daughter’s intelligence and lived experience as an autistic girls who was failed by the system.

Support for very young children is made much harder for disabled parents as it relies on drop-ins and settings that are not accessible.

Once identified, support is contingent on long waiting lists meaning that the child misses out on the key benefit of early intervention.

Direct support such as SLT or services like Portage have a significantly beneficial impact, but are not available readily enough.

Again, it’s critical to have a single point of contact for families navigating this system at the early years as it crosses over several services and joint working is imperative. At the same time, these families are new to the navigation of public services and cannot learn the system well enough in time for their child to benefit. We do see parents who have several children becoming more adept over time.

The SENCO role is critical and those fulfilling it are stretched far beyond reasonable capacity. It is imperative that the SENCO be a member of the senior leadership team but separate from the headteacher.

SENCOs require significantly more training than they currently do to include better understanding of SEND, how to identify and support the wide range of SEND in their setting. They also need training to be up to date with legal issues linked to SEND, including SEND law, the equality act and legislation pertaining to social care.

They also need training to understand how to access support in their locality, including outreach services, therapists, specialist teacher etc. They must have the authority to determine when such additional services are required, which means that they will need qualifications that put them on a level playing field with professionals such as educational psychologists. All this is necessary if they are to properly meet the needs of children with SEND.

For SENCOs working at KS4 transition and above, an understanding of the various routes towards adulthood available to young people with SEND will be critical.

An ISP must be created following individual assessment of a child’s needs by appropriate and trained professionals. This will include teachers, psychologists, SLT and OT and other therapists such as physiotherapists and mental health practitioners. Teachers alone do NOT have the expertise to determine the nature of a child’s SEND and the appropriate provision they require to make progress.

In order to be high quality, an ISP needs a description of a child’s needs and required provision based on that expert individual assessment AND it needs to be enforceable with accountability that sits outside the school.

The promise of a “digital” ISP is very concerning. We have seen 20 years of promise across the NHS that digital systems will allow for ease and visibility to benefit patients. This is still a long way from reality. Currently, local authority IT systems are so disparate that one part of the SEND service cannot see what another part sees, and social care are on systems so different that they may as well be in a different country. The “digital” nature of this ISP is irrelevant compared to the need for individual professional assessment and true enforceability which can only be provided with legal backing.

If ISPs are created based on professional individual assessment, providing a format for professionals in which needs are clearly paired with recommended provision will allow the correct information to be included. The provision must be specific and clear, in stark contrast with recommendations made by many LA-employed professionals in EHCP, where provision is so vague as to be incomprehensible.

ISPs should include a one page profile of the child that should be customisable by the child and provide a quick introduction. The remainder of the ISP’s content will depend on the needs of the child. For children with very complex needs, it will necessarily be longer and less concise.

it must be understood that a plan that is limited in length for the ease of professionals will cause important information to be left out in some cases which could be catastrophic.

ISPs must be clear and specific. Concise is a relative term and the lesser of the priorities.

Teachers in secondary school needs training to understand post-16 options for young people. This should form part of core teacher training for all young people. However, options for young people with SEND can be significantly more complex and teachers will need specific training for this as part of their weekly SEND training.

Many young people with SEND lag behind their peers in terms of daily functioning skills and these are not supported as part of the mainstream or universal offer. This is an important consideration, to include things like travel training, budgeting education and self-advocacy.

Colleges need to consider that young people with SEND are likely to need more support from their parents and should more easily be open to working with parents and communicating with them.

Employers needs training across the country to understand the value of schemes such as supported internships.

There is no doubt that many young people with SEND take several years longer to mature than their peers. Therefore it is crucial to provide educational opportunities that last into the mid-20s, to include serious academic pathways as well as employment pathways. Some youngsters are very capable of achieving high A level results if given a few more years. They are then able to consider higher education, often leading to broader career options.

It is simply impossible for an inclusion base to meet the full range of needs and this question is utterly baffling as the white paper specifically acknowledges that some children will require more specialist provision. There is not enough clarity about the proposal’s understanding of “specialist bases” to answer this question properly.

An increasing number of children cannot tolerate the mainstream environment, especially in  secondary school. There is no consideration of how the whole education system needs to change to make inclusion a reality, and until that is done, inclusion bases will not be suitable because these children will not be able to access them.

If the specialist bases are specialised, suitable education at the local school is not guaranteed. Children with SEND have a vast range of often conflicting need and they sit across all age ranges. Inclusion bases will have to include many different rooms with experts and specialist teachers to ensure that those children’s needs are met where they are able to access the site at all.

There is a very significant risk that these bases will become nothing more than exclusion zones or holding places staffed by LSAs rather than teachers and children with SEND will be more isolated than ever before.

The white paper does not clarify what it means by “success”. I would argue that success means the ability to access learning at the pace and level that is appropriate to a child’s learning ability. It also means the ability to access extra-curricular activities, to have a sense of belonging, to make friends. It means the ability to use reasonable adjustments without fear of bullying, to be accepted by peers.

Inclusion bases cannot do this. If the inclusion base is staffed by highly specialist teachers, therapeutic professionals and with the appropriate environment for the children it is supporting, this will go some way to overcoming the barriers placed by SEND. However, if a child is attending an inclusion base, they are by definition not with their mainstream peers.  This means that they are missing out on teaching, or socialising, and they are by definition excluded from their community.

Inclusion bases can be extremely successful for a specific cohort of children, and there are great examples of good practice. However, professionals running them are very clear that their success depends on being selective with the students they accept. Adding children with more complex SEND would have a hugely negative impact for those students already succeeding there.

The principle is welcome, but it is difficult to see how different it is from the aspirations currently in place. The limitation of the current system is not lack of such aspirations, but a workforce that does not exist, and complete lack of resource to fund these experts.

The white paper already limits the expertise of this workforce to “Targeted Plus” and “specialists”… this is in direct contradiction to the acknowledged importance of early identification and early intervention.

There is considerable pressure being brought on school staff, using experts at hand to advise, but with an expectation that school staff will deliver any therapy. School staff are already overstretched and under-resourced. Asking them to deliver therapy for which they have no training is unacceptable.

The amount of Experts at Hand time mentioned is simply not enough to meet current need, let alone the massively increased need that will happen when fewer children are able to access specialist schools.

We do not have the educational psychologists, speech and language or occupational therapists to meet this promise and each of these roles takes many years to qualify.

Should each school have an onsite EP, SLT, OT and counsellor, this would be a phenomenal offer and would allow more children to stay in mainstream setting, but that is not what is being proposed.

Firstly, I need to ask why you are excluding the needs of children with higher incidence, highly complex needs? I work with children who have experienced significant, long-lasting school related trauma and are left with very complex needs, often accompanied by average or above average academic ability. These children cannot access a mainstream environment and none of the proposals here address this problem because the mainstream environment and curriculum are not under reform. Yet they will, with the right education, be significant actors for the future of our country.

Every child with complex needs requires a holistic, individual assessment which identifies their SEND and the provision that they require to meet them. The current system of EHCPs addresses this well and only fails because mainstream education is under-resourced and SEND is incompatible with the pressures on schools to secure high grades in exams and unerring compliance.

We need far more specialist schools that can cater for a range of specialist SEND and offer inclusive, suitable education closer to home for disabled children. Inclusion bases cannot meet the need that I see every day in my work.

We have learned through painful experience of children with SEND being failed for generations, that individual assessment leading to individually considered provision is critical for children with complex needs. Their very complexity makes them the “square pegs” that do not fit the “round holes” of mainstream education. The proposal of specialist provision packages is merely designing holes of such precise shapes that it is almost guaranteed that for too many of the most complex children will once again fall through the net, or stay excluded from their entitlement to a suitable education because this proposal removes their right to correct identification and support. Predetermined specialist provision packages are  by definition the wrong approach to meeting the needs of children with complex needs. The only way to support these children’s needs is through individual and specific provision. Additionally, this question simultaneously refers to children with the “most complex need” and refers to packages to support the “main types of needs”. All too often, the most complex children fall outside the main type of need, which is precisely why they require such specificity of provision.

This proposal removes the legal rights enshrined in the current EHCP system that ensure children the the most complex needs (all children with EHCPs have extremely complex needs – the system ensures that this is the case) are supported in the most suitable way. Tribunal figures confirm that the provision described in EHCPs is suitable and proportional. If and when schools and local authorities fail to deliver this provision, families have legal routes to accountability. If local authorities were properly resourced, EHCPs would not be challenged at tribunal, and the failure to deliver would not be challenged by judicial review.

This proposal suggests that we should resolve this failure to deliver suitable educational provision by removing the legal accountability currently in place. Provision captured in ISPs has no route of accountability according to your proposal, leaving children with no legal entitlement to a suitable education. This is a shocking retreat of disability rights, taking us back to a time when disabled children were considered to be uneducable.

Schools complaints procedures fail to secure independent investigation of injustice on a daily basis. Beyond the school’s own procedures, no mechanism exists to examine a school’s decision, so the notion that delivery of provision for the most vulnerable children should be left to under-resourced, fairly small organisations without external oversight is the opposite of effectiveness.

Swift action to identify and support very young children is necessary, and I would highly recommend adding children with a limited life expectancy to this list. The current legislation offers a 20 week process from request for EHCP to final plan. This allows for a multi-disciplinary approach, individual assessment including strong input from health services and educational psychologists. The only effective means of supporting children like this with the early identification and intervention they need is through that individual, expert assessment followed by a clear description of the specialist educational provision they require to learn and make progress. Should this have been put in place as described in CAFA 2014, we would likely have more children in mainstream school. A swifter process for these particularly vulnerable groups would require a greater workforce specifically aimed at them.

 I do not believe that the route should be to packages, particularly in these groups as they are very likely to be highly complex and individual children.

The other necessary resource to support these children are more specialist nurseries that offer direct speech and language therapy and occupational therapy as a minimum. These nurseries must be accessible for children so that we are not putting small children in taxis to travel unacceptable travel time.

A needs assessment must be individualised and conducted in person. Advice and evidence must be gathered from the child as much as is possible, following the same thorough support as that offered an adult undergoing a social care assessment under the Care Act 2014. Parental evidence is key and must be considered with the same level of seriousness as that of any professional. School advice and information regarding interventions, attendance and academic attainment is key, but insufficient to advise about SEND. Educational psychologists must assess the child in person and this should include standardised testing looking at cognitive ability, executive function and specific learning difficulties (including dyslexia). Other professionals such as speech and language therapists should be advising on communication difference and occupational therapists will advise on coordination, sensory processing and a child’s daily functioning. Mental health  assessment by a psychologist or psychiatrist should be conducted where there is suspicion of mental health difficulties.

These assessments should be readily available early in a child’s SEND journey, through public services. However, where services do not assess, private reports must be considered when written by professionals belonging to a recognised professional body.

These assessments should inform the contents of an ISP, delivery of which must be legally enforceable at ALL levels of provision.

Since 1944, parents in England have had the right to name a preference for their children’s schooling. Parents of disabled children were excluded from this until 1980. The current proposals row that hard-won right of equality back by limiting provision of specialist schools using the vague mechanism of specialist provision packages, making it significantly more difficult to access a school out of area (which will increase the reality of a post-code lottery) and removing the tribunal’s ability to name a school against a local authority’s wishes. This is a tragic repealing of rights that go a small way to levelling the playing field for our most vulnerable children.

In direct answer to the question, LAs should provide a clear and comprehensive list of all schools, both maintained and independent. Once a child’s needs have been comprehensively identified through individual assessment, the specified provision should naturally lead to appropriate settings.

Current legislation precludes an LA from advising parents about suitable settings. Instead, the LA makes its own determination, largely weighted by questions of resource rather than the child’s needs. This leaves parents having to research schools with little to no support and is entirely inequitable. Parents need transparent information about all schools, both mainstream, those with inclusion bases and specialist. This must include maintained and independent schools merely because there is massive insufficiency of specialist places in the maintained sector. Schools must clearly state a description of their cohort of students in terms of age, SEND catered for, academic ability. They must also state what therapeutic support is offered, class size, staff:pupil ratio and pastoral support.

Importantly, the right to parental preference must remain enshrined in law. The current duty on LAs to consider public funds is sufficient to ensure that more costly settings are only agreed when no other school can meet need.

More importantly, we need more specialist schools at the same time as investing in a significantly reformed mainstream education system that entirely rethinks the role of disabled children at its heart.

The phrase “alternative provision schools” is an oxymoron. By definition, children who require alternative provision are not able to access education in a school setting. Those children whose needs can never be met in a school should have an EOTAS package as is already set out in law. The current proposal ignores these children entirely which is a grave error.

Many children dependent on alternative provision are in this situation because LAs and schools have failed to properly identify and meet their SEND. In many of the cases I support, schools have not been able to access experts to identify and offer provision (EP, SLT, OT, MH). Subsequently, the LA has refused to conduct an assessment of need on the basis that the school had failed to do what they “should” (but could not do). These children are left in a loophole and must rely on s19 of the Education Act 1996 – which is all too frequently not applied and parents are left no recourse but judicial review. In other cases, the LA recognises that a specialist school is required but is unable to find a suitable space – another confirmation that more specialist places are required.

Alternative provision should be temporary, but this cannot be measured as a standard. If the education system and the SEND system are fit for purpose, AP would be extremely rare for SEND children.

The government has no credible leg to stand on with this proposal until it has resourced maintained specialist SEND provision appropriately. Regulation of independent special schools is appropriate where companies and overseas funds profit from our most vulnerable children. However, the current system makes these schools essential to their education and their hope of independence in adulthood.

Now is not the time to cap fees for independent schools for the same reason. It is enough to look around the country at this time of proposed, huge SEND reform, and see increasing numbers of independent schools seeking DfE registration to know that the government is hostage to these schools until they develop suitable provision.

Regulation and proper oversight of such institutions is very important. But it is also important to understand the fallacy of the argument put forward that these schools are “money-grabbing”. Provision at these schools is not comparable to existing maintained specialist schools. Independent schools offer onsite therapeutic support, often smaller class sizes and a broader range of academic options than maintained schools. They are not like for like and until maintained schools truly deliver provision that is required by our children, the independent sector will be needed.

I work with a variety of schools daily to help them support children with SEND and manage their funding. This is more difficult with mainstream schools who often do not know how to use the funding to support a child. Pooling SEND funding means making decisions at the beginning of the school year based on a general understanding of their cohort (very much the model described in the proposal). However, mainstream schools are notoriously unable to identify need early (they are not experts in this field), and the need of their SEND children can be particularly complex as these children do not fit easily in the “severe” SEND categories – in fact this makes their needs far more complex. Much of the funding disappears into the current “experts at hand” model and I do not see anything in the proposal that suggests schools would be funded well enough to support the children with SEND in their settings. Settings should be held accountable, and this must start at an individual level so that the necessary funding is provided to the school. Accountability is meaningless without sufficient resource.

The starting point must be individual assessment by experts. This leads to specific required provision that can be costed, and a school would then be able to present a clear costed plan for their SEND requirements for the year. An external auditor must be appointed to undertake independent examinations each year to ensure the funding is being spent appropriately on the children who need it.

The complexity of SEND funding is a problem which may in itself be costing a great deal. But this is not the starting point. Any efforts to resolve the system such that children’s needs are met and they are supported to their best educational outcome and independence in adulthood starts with individual, expert assessment that leads to clear, specified required provision. This provision must be clear enough to be costed. Once this is done, a school’s SEND budget becomes transparent at which point receiving direct funding from a central body seems far more practical than the current layered system of funding. When a child is newly identified with SEND, seeking more resource from the LA is an exhausting process that adds delay to support. A new system predicated on individual need would benefit from a clear, central body that can increase funding as/if new children are identified through the school year.

We are many years away from a consistent school picture with SEND. Schools with good practice attract more families and those schools require more funding. But this cannot be determined by wishful thinking of robotic caricatures of “types” of SEND child.

My experience of academy trusts is patchy at best. Sometimes, pooling of schools informs good practice and supports school staff with shared knowledge that they all benefit from. More often, I see extraordinary schools weighed down with pressure from the leadership of the group to focus on the metrics that Ofsted are far more interested in than SEND: attendance, behaviour, academic attainment. The autonomy offered each school and each trust creates pockets of independent practice and this proposal would increase this problem that effectively increases the disparity of support between different parts of the country.

Pooling funding would inevitably, in my experience, lead to the schools with the greatest concentration of SEND struggling to meet their pupils’ needs and move yet further away from the necessary focus on individual children’s assessed requirements. This proposal yet again tries to paint an idealised picture of children who fit neatly into a box and whose needs can magically be met and “fixed” by using one of the fixed shape and size of “plaster” available in the yet to be designed inclusion standard, or provision packages.

It is a fairy tale vision of SEND that does not reflect the messy complexity of the children I support every day.

Please see my comments above about the current problems in multi academy trusts. These disagreements do not get resolved. Disagreements of this sort only arise when resource and funding do not meet the required need. The solution is to assess individual children’s SEND needs, determine specific, costed provision and ensure that funding is sufficient to deliver it. If need is identified early (by experts), provision is cheaper in the long term.

There has been no mention of the role played by “experts at hand” in this section and they must be at its core because they have the expertise to determine the necessary provision required to support a child.

Dispute resolution in the school system is notoriously difficult, adversarial and ineffective, whether it is a parent making a complaint or a staff member trying to raise a concern. Whistle-blowing in schools rarely succeeds and individuals are almost always left with no option but to leave the school or entire trust. I have no faith whatsoever that schools or MATs have the ability to manage such disagreements, and I believe that widening the group to more local schools will make equitable resolution to the benefit of SEND children largely impossible.

Again… the only solution is to identify need, identify specific provision that leads to a proposed budget. And this budget must be resource adequately.

The consultation document does not explain what it means by a local partnership group. The phrase is only used in these questions. It references local area partnerships currently in place. The system is currently extremely adversarial, as each partner protects its insufficient resource budget and passes responsibility on to another. Local partnership groups must have serious and equal parent carer members and young people representatives. They should include schools and all schools should be able to make representations if required. The local authority is an important member, as are health services (both physical and mental) and social services. But simply adding administrative meetings is not effective. The effective use of such a group is to ensure that individual children are being properly and expertly assessed such that the group has a realistic understanding of NEED which then leads to a clear understanding of the cost of that need against the resource available. Only then can serious discussions be had about bridging the gap. Lived experience must sit at the heart of these groups and be considered with the same level of expertise as any other member.

Parent carer and young people must sit at the heart of these groups and must be considered peers – they should not be expected to give up their time for free when they sit alongside officers and headteachers who command significant salaries. They represent the reality of a life lived with SEND and must inform everything else.

Schools should be represented by staff working directly with SEND children.

Health services should be represented by each service involved rather than an overseeing manager.

Social services currently fail to identify and support children who meet “child in need” category as disabled children but do not meet local criteria for support. These children may be supported by workers trained in safeguarding issues and this is often catastrophic for families. Social services are important stakeholders in these groups, but their own role needs serious consideration as part of the SEND system.

The voluntary sector is crucial  as it delivers enormous parts of SEND provision. Early years providers must be represented and individual providers must have the opportunity to join the group as needed. This may include midwifery representatives as needed. Post 16 institutions, both mainstream and specialist are key to the partnership, as are employers who play a role in determining the educational priorities that allow SEND children to enter the workforce.

However, a partnership is only successful if it has a clear agenda and the resource with which to follow it through.

Strategic plans rely on complete, truthful data. So the first requirement is to face the extent of SEND we are facing right now. By assessing children individually to understand what their needs and requirements are, we will build a true picture of need. This allows for the development not only of a strategic plan and an understanding of the true resource needed, but would also support the investigation by researchers of the change in our society that has led to the apparent increase in need. We know that children are attending school more than they were 20 years ago because we monitor attendance far more closely – how much has this allowed existing SEND to come to light?

This exercise then allows leadership groups to determine workforce and infrastructure requirements, which can then lead to a plan. Initially, this will involve difficult decisions that leave some children without the provision they need to reach independent adulthood (which of course has a life long impact on the adult social care budget). But sweeping need under a carpet is not the solution. LAs that currently do this find themselves with high numbers of appeals they lose. Removing the right of appeal will only make this situation worse, and that will be seen by increasing numbers of child suicide, parent illness and suicide and adults requiring life long support from social care.

The SEND system is complex and sits across all aspects of a child’s life: education, health services, social services, the voluntary sector, benefits systems and more. The current local offer websites are mazes that are impossible to navigate for a family new to the system. Information and advice must be transparent and complete (including information about independent provision), but guidance is key. SENDIASS services are excellent, but massively underfunded so do not deliver what was promised. Families almost always need guidance from someone experienced in the system to navigate it correctly and effectively and the system relies on their ignorance to save money.

All information – including legislation which is a key requirement to a parent’s understanding of the system – must be written in plain English with accessibility in mind. A reading age of 7 years is considered to be accessible. ISPs and EHCPs should be specific and written with no room for interpretation. They should be accessible to the child as much as is possible, including easy read versions where needed.

England has an army of independent SEND advocates, often with lived experience supporting families. This role should be build in to the system to ensure fairness and should be informed by lived experience. This role was identified as crucial in the Pathfinder programme leading up to CAFA 2014 but not included due to financial consequences. It would have been an investment and can still be.

The notion that accountability is possible through the school complaints system is an absolute fallacy and one of the most dangerous proposals in this consultation. Any complaint about SEND support and provision must be investigated by an expert in SEND, but this does not describe the majority of SENCOs. They have minimal training and are at heart teachers with additional administrative burdens. The proposal leaves identification of SEND to teachers who do not have the expertise to do so appropriately. It also leaves decisions about provision to schools who do not have the expertise to make them. Complaints will abound. The schools complaint is so internal that they are rarely resolved satisfactorily as leadership and governors have their staff’s wellbeing as their priority. Stage 3 of a complaint typically involves an independent person chosen by the school and therefore not truly independent. Further escalation does not allow for investigation of the decision, only the process. SEND complaints about identification or delivery of provision are hugely complex and emotive. They MUST be informed by expert, individual assessment and investigated by wholly independent experts. In fact, the current appeal system should be applied to all children with an ISP to ensure that provision is delivered. Removing legal accountability guarantees a failure of the system to these children as is borne out by the fact that parents are forced to appeal and JR due to LAs not following the law.

The proposal indicates a significant shift away from hard-won legal rights for disabled children. These  seem to be the measures that have already been finalised and is the most worrying aspect of this “consultation”. The government’s narrative of “we want to listen” is not borne out by the evasive answers and the decision to block comments or delete social media posts.

Disabled people often quote an important phrase developed with the NHS: “no decision about me without me”. Unfortunately, parent carers across the country have said clearly that this process is being done TO them and their children. The proposals to remove individual assessment, to water down access to experts and to squeeze children into a box of predetermined (yet not clearly specified) packages is profoundly concerning and my daily work leads me to the firm belief that it cannot work. Should the proposals go ahead, I expect significant numbers of teachers to leave the profession. Children who are doing well at school will be negatively impacted by children whose needs cannot be met there. I fear that a generation of children will be abandoned and will reappear in adult social care with high levels of need throughout their lives. I fear and am confident that we will see avoidable child deaths.

Legal entitlement to a suitable education determined via individual assessment is NECESSARY. Schools and authorities must then enforce that law, leaving an appeal system to hold them accountable.

Disclaimer

The articles published on this website reflect my personal understanding and experience of disability law as a person living with a disability and engaging with the legal framework that affects disabled people.

I do not write in the capacity of a lawyer, and nothing on this website should be construed as legal advice, legal opinion, or a substitute for advice from a qualified legal professional.

The information provided is intended solely for educational, informational, and public discussion purposes. While I strive to ensure accuracy, laws and regulations evolve and their application depends on the specific facts of each situation. Readers should seek independent legal advice before acting or refraining from acting on the basis of any information contained in these articles.

No lawyer-client relationship is created by the publication of these articles or by any communication arising from them.

Uncategorized

Why I choose hope…

Tomorrow, the government is releasing a white paper that will lay out its plans for supporting children with special educational needs (among other things). This is a long-awaited paper that follows weeks and months of uncertainty, delay, and what can only be described as propaganda and consultation by media.

Those of us with disabled children have seen our families described in binary terms, with our experience squeezed into convenient boxes that suit the government’s desperate wish to save money. Comments from the general public on social media and “in real life” confirm one thing: the demonisation of disabled children and their parents has been staggeringly effective – intended or not.

And we are left tonight with the prospect of losing so much that should help us keep our children safe, well and alive that it is very hard to remain hopeful. We are still working with uncertainty, and there is no doubt that there is much work to be done once the white paper is published, when uncertainty yields to facts.

Tomorrow, I will open my files.

I will book meetings with schools during which we will discuss the fact that they are unable to deliver the special educational provision that a child needs (and that they are legally bound to deliver). I will remind them of their duty, and I will work with the local authority to remind them of their legal responsibility.

I will continue working with another family to ensure that school staff make referrals that arise from their observations of special educational needs. I will remind the school that “but the OT service won’t answer” is no reason for not making the referral – that their job is to identify and seek expert advice.

I will support young people to navigate the move into adulthood – that delicate overlap between education, social care and welfare.

I will meet a “dispute resolution officer” in a bid to secure the right support for a child before the hearing date in 2027.

I will work with families to help them navigate everyday life with a disabled child: we will talk about supporting sleep, how to cope when your child doesn’t eat, how to secure feeding and other tubes. We will take time to acknowledge that neither mum or dad is sleeping much at all, that there is nobody able to give them a break, that babysitters are never a part of their lives because their child is simply too complicated.

Tomorrow, I will take the next best step.

I have already started thinking about what that next step might be in the face of the leaks we have heard.

Everything I know from 25 years in the SEND world tells me that the plans discussed make little sense. I cannot see how the fairy tales can be implemented. I suspect many, many teachers will leave the profession. I suspect that more children will be harmed and that the burden on adult social care in years to come will be overwhelming as a result.

But despair paralyses me and makes me annoyingly useless. So I choose hope. Not the airy-fairy fingers crossed hope.

I choose the hope that makes me open those files in the morning and continue working within the system that is currently in place.

I choose the hope that will have me reading every word of that white paper and considering my response. The hope that will push me to contact any and all elected officials I can.

I choose the hope that sees parent carers of disabled children, and anyone who knows a family like mine standing up to the government and declaring:

Every child deserves an education that meets their needs.

Every child deserves to feel safe at school.

Every child deserves to live.

Uncategorized

The Cost of asking for help

A very long time ago, once upon a time, in the depths of the fog of the great long past, I was a young mother. I had two little children who were growing up and learning and causing the usual havoc that toddlers do.

We lived in the beautiful bubble of home that so many young families enjoy. We saw grandparents every few weeks. We went out of the home to see other parents, to go to the park or for playdates with the children. We created a cosy, safe place at home that was ours alone, as so many families do.

And then Little came along…

While I was expecting number three, we realised that Eldest was struggling, both at home and school. He was different from his peers in ways difficult to pinpoint: his behaviour was tricky, he wasn’t sleeping very well, he was “too clever” and didn’t understand the difference between children and grown-ups. So began meetings with teachers and doctors and intrusions into that bubble that was home.

And then Little came along…

Eleven weeks later, Little was rushed to hospital and diagnosed with failure to thrive (bad mother!), a heart defect and leukaemia (“can’t you see he’s dreadfully ill?” – bad mother!).

My older two were thrown into strangers’ homes to allow me to go to hospital visits. The strangers were  known and safe villagers, but nevertheless strangers to me and the children. Asking for help was not a choice, but a necessity and I had to accept it from wherever it came. “Act now, ask questions later” became a necessary survival technique.

Time wore on and we got into the rhythm of hospital visits. We moved country, we moved house, we moved hospitals, and doctors and nurses. All with Eldest, Girl and Little under the age of 4.

We are human and we couldn’t keep going without help.

So I took a deep breath. I knew that help would mean allowing people into our home bubble. I knew that people would look at the dishes in the sink and likely “tut”. I knew they would look at the mess on the table, the floor and their eyebrows would rise to the ceiling. They would see the pile of sheets covered in vomit and wrinkle their noses. But I knew I could not keep going alone much longer.

So I called the health visitor. And the church. And from there we say nurses, and social workers, and carers, and therapists. And because the world is what it is, most of those lovely people moved on to other things after a while, so I would meet a new nurse, social worker, carer, therapist, teacher, teaching assistant, support worker… oh another nurse from another department!

I now work as an advocate supporting families like mine. In this video I explore the cost of asking for help from that perspective…

I made the decision to ask for help 22 years ago, almost to the day. Since then, my home bubble has been open to the world and I have been open to a parade of well-meaning strangers’ judgements.

I am grateful beyond measure for all their help and I hold them very dear in my heart. But the cost to my family of that help? It was our bubble, our “safe” space, our little world to which we could retreat. And that should never be underestimated.

parenting, Preparing for Adulthood, SEND approaches

Why Legal Rights Matter: Protecting Children with SEND

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.

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:

  1. Assess and identify special educational needs.
  2. Determine the special educational provision required to meet those needs.
  3. 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?

“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.

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…

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.

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.

Uncategorized

Coproduction on the frontline of SEND

Contradiction and compromise abound in the world of special educational need and disability. We have good legislation yet far too little resource to implement it. And it is crucial that our community keep working with elected officials to ensure they realise the importance of those legal rights, but it’s equally important to find a way to make today’s system work for families. They can’t wait for next year, or the next bill…

parenting, SEND approaches, Therapy

Making Friends

One of the most common themes I encounter as a parent carer and as an advocate for other parents and disabled people is a profound social and emotional isolation. Our lives are just different or chaotic enough to preclude the chats at the school gate, visits to the park or gentle walks to the shops in which small words and conspiratorial glands lead to play dates and friendships both between children and parents.

Instead, we find ourselves apart, “othered” by our circumstances. Our children all too often struggle to make or maintain friendships and we retreat from a world that seems to find us “too much”… or simply misunderstands and maybe fears us.

In response to this experience, I have become hyper-vigilant and hyper-aware of any opportunity for connection. I am primed to notice any potential path to friendship. As a result, I experience serendipity on an unusually frequent basis.

Serendipity: the occurrence and development of events by chance in a happy or beneficial way

In reality, serendipity is closely associated with its human element – one must be open to such happy discoveries in order to notice them even when one is not looking for them!

Much of my work relies on an expectation that there will be support somewhere, that there are always “next steps” in the face of hardship, suffering and despair. And sometimes, those next steps are very tiny and unexpected. Many of the families I work with have almost unknowingly found their solutions before I meet them, but not recognised the remarkable work they are doing. So initially, I take the time to help them see the love and dedication they have and are showing for their children: the research into their children’s “conditions”; the time taken to consider previously unconsidered parenting styles or “therapies”; extra-curricular activities, tutors, clubs that they never realised existed.

In turn, I share the knowledge I have garnered over more than twenty years. That might be in the form of tiniest tips to support a child in meltdown, or formal work to ensure public services are doing as they should. It could be finding the elusive “self-care” that we all speak of so highly but struggle to implement. And often, it’s about signposting a family to resources that are only catalogued in our collective mind – the community knowledge that is so difficult to create these days (no, the “local offer” websites do not solve this problem – a discussion for another day!).

Through all of this, the connection I forge with these families is all the stronger when it is dynamic. By learning from them, I empower them with the realisation that they can do far more than they believe themselves able. And in that relationship, my hope is always that they feel able to continue their journey without me – when the time is right for each.

Note to those Wise Ones who choose to read this book – pay attention to the photograph, especially to the “trolley”!

One of these encounters has led me to the astonishingly beautiful and moving work of Anita Hughes, whose book “Making Friends” I have just devoured on a sunny May Saturday.

Anita (her style and manner draw me to use her first name – I think of her as a friend I have yet, and hope one day, to meet) is an educational psychologist who has developed a social and therapeutic group “intervention” (oh my, how I hate that word, but it seems the closest fit for now) called “the friendly group”.

Thrilled and delighted at the notion of a therapeutic approach to friendship and social interaction for autistic children (well.. children who struggle with friendship), I ordered Anita’s book that very day. It arrived last week and has sat patiently on my desk awaiting the weekend and a few precious “free” hours.

I admit that initially I was a little daunted. I work hard, my home life continues to be quite intense demand significant emotional energy and I try to find time for creative pursuits that replenish me. So any additional moments are precious opportunities for rest and “escape”. Reading a non-fiction book that sits squarely in my world of work felt a little more like “homework” than “pleasure”.

Oh my goodness was I wrong!

Love, compassion, understanding and an uncompromising belief in autistic people’s desire and ability to make connection leaps our of every page.

I cried the bittersweet tears of recognition, nostalgia, hope and sadness while reading each chapter. I longed for time travel and the opportunity to offer such a chance to my children, while looking forward with excitement to acting on this newfound knowledge with my grandchildren.

Anita describes a simple (not easy) and effective approach to one of the biggest and seemingly intractable problems seen in schools: increasing numbers of children display social interaction difficulties and soaring anxiety.

We talk and talk of the epidemic of mental ill health in youngsters. We stress the need for emotional regulation, a “relational” approach to children and the importance of emotional wellbeing.

But we prioritise rules, uniformity, physical attendance, homework, grades, obedience…. all within an urgent need to adhere to a clear timeline.

Anita demonstrates how much can be achieved by protecting a couple of hours each week and affording children a one hour session in which time can pass at their pace within a clear structure. Freedom within boundaries…

It’s hard to see how any school could find this unmanageable.

There is so much learning in this book for me – both as a parent and as an advocate and consultant. For any parent, grandparent, family member of an autistic child (or adult. For EVERY teacher, practitioner, SEND officer!

I truly believe that Anita’s book should be compulsory reading for anyone working with autistic children. If only one of the gems in it were applied by each adult our children encounter, their lives would already improve.

I am left with so many questions! So many of the families I work with would benefit hugely from the Friendly Group, and Anita’s book gives a wonderful starting point for someone wanting to start their own. Maybe you, dear reader, have already done just that? What is your experience? Have you seen a similar approach to support older young people or indeed adults?

My journey does not end here. “Making Friends” made my Saturday more beautiful, but that is only the beginning. I look forward to finding out more, to seeking out “Friendly Groups” near and far and learning even more… and I urge you to join me on this journey!

Find Anita’s book here!