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.

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.

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…

Uncategorized

Jargon… is it only for professionals?

As parent carers (and their representatives), we often ask professionals to avoid using jargon or acronyms. Apart from the fact that these make understanding difficult, acronyms in particular can mean many things.

In a recent example, my daughter was asked by her GP if she was using a wheelchair due to SPD.
Both of us immediately thought he meant “Sensory Processing Disorder” and were quite confused as to why that would require a wheelchair. It is one of her diagnoses.
In fact, he meant “Symphysis Pubis Dysfunction”. She was pregnant, and it was a reasonable assumption (correct, but not the primary reason for her wheelchair use).
Moral of the story: avoid acronyms!

But today I am thinking about language that parent carers begin to use which may not sound like jargon but is… and in the same way as medical or professional jargon, there is a huge risk that “lay people” will not understand. In this case, “lay people” include extended family, parents whose children do not have additional needs, teachers, therapists, doctors and all kinds of professionals.

Are we shooting ourselves in the foot by using such language, that feels really relevant, but that opens us up to misunderstanding and can even diminish our children’s needs in the eyes of others?

Masking

If you are the parent of a child/young person suffering from anxiety, or who has autistic or ADHD traits, you will be familiar with the notion of “masking”.

To ‘mask’ or to ‘camouflage’ means to hide or disguise parts of oneself in order to better fit in with those around you. It is an unconscious strategy all humans develop whilst growing up in order to connect with those around us. 

However, for us autistic folk the strategy is often much more ingrained and harmful to our wellbeing and health. Because our social norms are different to others around us, we often experience greater pressure to hide our true selves and to fit into that non-autistic culture.

Dr Hannah Belcher, from the NAS website

“Masking” is a very real and traumatising strategy employed by any child who is suffering from anxiety, so it’s no wonder that parent carers use the word so frequently once they understand it. It describes the child who is “fine in school”, then arrives home sobbing uncontrollably, or so exhausted that they curl up on a sofa and stare into space for hours, or comes home screaming abuse at mum, hitting or breaking anything in their way.

My biggest lesson about masking has been the following: most people cannot control how, where or when they mask. Many are not even aware that they are doing it. This is particularly true of children.

Those of you who have been following me on my Tugboat journey will have gathered that I like to explore different perspectives on the same issue. Today is no different!

If you are a professional…

When you hear a parent talk repeatedly and with passion about something like masking, take a breath. Do not assume that they have jumped on a bandwagon, have “self-diagnosed” their child.

Try this as a starting point:
In front of you is a parent whose child is not happy. In response, this caring parent has possibly tried to ask for help, has researched their child’s behaviours and characteristics and has learned from other parents, from internet searches, from support groups. This is valuable evidence that can help you help the child – if only you accept it.

If you are a parent…

It’s so easy to overuse a term that fits so beautifully once you find it. And before you know it, in the world of social media, that word is EVERYWHERE. But do all those using it truly understand it?

I think it’s probably fair to say that most people have a vague understanding of “masking” now, in a way that they did not five years ago. But this means that it has become overused and for the most traumatised children, the word has become devalued. Don’t forget, too, that every single human being masks – it’s the reason we are able to be social creatures. But in our world of additional needs, we use the word to describe a child in fight/flight mode, who is leaning on a survival strategy day in day out. That causes trauma and will lead to serious difficulties.

In other situations, you will be talking to people who have no idea what you mean when you use the word. Often, these will be professionals, and they will be listening to you and coming to their own conclusions about the meaning. “Masking” is an active verb. It’s all too easy to understand it as a conscious choice made by an individual. So either the child has such good control of their emotions that they must be able to make other choices. Or they are defiant. Or they are manipulative.

It is our responsibility as parent carers, and as the person choosing the words we use, to ensure that they are understood in the way we intend.

Whenever I am talking to someone about my child’s “masking”, I start with an explanation of the term. I explain that in the case of an autistic child, masking is very much like a survival strategy that keeps them safe.
It’s rare that they are aware of doing it, only how very tired they are when they finally find themselves in a safe space.
For those children who are aware that they mask, many cannot control it. This adds a level of panic because they are not behaving in a manner true to themselves, but nor can they change their behaviour.
When the “mask” comes off, many children have a violently emotional reaction. Have you ever put your palm over a tap to stop the water coming out? When you remove your hand, how strong is the flow of water?
Most of our children struggle with communication and their emotions – far more so than “average” children. So when that mask comes off and they feel a gush of complex and often contradictory emotion, they are overwhelmed. It’s deeply frightening. So it’s no wonder that we parents are suddenly faced with children in meltdown or shutdown states.

Now I’ve explained what I mean by masking, I will try and take the time to check in with the person I’m speaking to. How does what I’ve said make them feel? Is it something they recognise? Have I made them think a little differently? It’s really worthwhile asking those questions out loud. Apart from anything else, if you treat someone in the room as an equal, they are rather compelled to do the same to you!

Only at this point will you be able to have a real discussion because you are now all speaking the same language.

Jargon goes both ways

Don’t forget to check your jargon! You may not even realise the words you are using are jargon to someone else.

Uncategorized

Strengths-based model?

In the UK, support for children with additional needs or disabilities starts from what is known as a “strengths-based model”. This is a psychological approach that focuses on a person’s strength and ability to control their own lives, and starts from the position that this person can and will be resourceful and resilient when faced with difficult situations.

If you are the parent of a small child (or indeed not so small) with additional needs or disabilities, you may well be seeing red already. Most of us approach systems for support because our child cannot control their own life, even when compared to their peers, or has been so knocked about by life that they have little resilience left. And yet…

When systems first identify that a child has additional needs, they bring overly bright smiles to the table and ask us to “focus on your child’s strengths”…

Don’t ignore the problem!

If I walk into hospital with a broken bone or a bleeding head, I do not want you to ask me which parts of my body are working well or feeling good. At least not at first!
Please fix the bleeding first! Deal with the crisis, the reason I am here and then later we can talk about the fact that I can use crutches because my arms are fine.

When a parent approaches you because their child is not reaching a certain developmental milestone, or they are crying every day after school, or they simply cannot recognise their letters… deal with that problem first. Now is not the time to put on that huge (and rather obviously fake) smile and tell them that Sam paints beautiful drawings, or that Lou is “such a happy child”.

Please help us find solutions to the problem that brings us together.

Find or create “stable”

The strengths-based approach that much of our lives centres around depends on a certain degree of stability. To be resilient and resourceful, we have to have a functioning “owl brain” (https://www.brightfuturescounselling.com/post/the-lizard-dog-and-owl-explaining-the-brain-to-children). Our pre-frontal cortex, responsible for analysis and problem-solving, has to be “online”. And that can only happen if we feel safe and stable.

Here’s the thing: many if not most children with additional needs only rarely feel safe. They are often confused, anxious and stressed. They live in near constant panic because they are rarely in an environment that suits those needs. So their cortex, their owl brain, is most often off-line… and yet we ask them to perform tasks that only that part of their brain can do!

So once you have helped fix the immediate crisis, the “bleeding”, your job as the adults around that child and their family, is to help them create “stable”.

Think about the physical environment and its impact on that child. Think about the demands of the day, physical, emotional and psychological. Can the child manage a change of classrooms? Is the maths lesson at the best time of day? Do they need breaks in a quiet space to self-regulate?
How can you put the child first within the highly regulated environment of a school, a hospital? It might take three hours with a play therapist to perform a blood test – but if you take that time, the next will be much shorter…

Now! Build on strengths

Only now can you start truly thinking about strengths. Now that you have a safe, regulated child in front of you, working with them and their family to discover AND BUILD on their strengths, resilience and resourcefulness is possible, and exciting!

Don’t even start if you are not prepared to change the way you work to include those strengths – that would be unfair.

If a child is exceptionally good at science, what will you put in place to encourage that and allow that child to excel?

If they love running, how can you add more running to their day?

If they delight in helping younger children, can you set up a mentor scheme within your school or club to allow them to do more of that?

In conclusion…

The strengths-based approach is an incredibly valuable one – but like a sticking plaster, it works if the wound is small, identified quickly and cleaned first. It is not appropriate when faced with a dirty, bleeding open fracture.

I like to think of it as akin to preventative medicine. If we can learn to eat well, exercise, practise self-care to maintain our emotional wellbeing, we can prevent all manner of health problems as we grow older.

If – and it’s a big if – we are able to identify a child’s needs before they go unmet, then we can use a strengths-based model to equip them with the tools they will need to handle life. The reality is that most children with additional needs are identified because those needs have not been met. In that case, you cannot use a sticking plaster. Emergency medicine first please, followed by convalescence and rehab. THEN and only then can you start thinking in a strengths-based way…

Uncategorized

How do you Holiday?

It’s late summer as I write this and I know that many families like mine, like yours are reaching the end of their energy reserves. Our children with additional needs more than most require a “village” to raise them. And the support systems of school, clubs, respite seem to become very scarce indeed during the holidays and this is especially true of the long summer break.

Does your child sleep? Can they ever be left unsupervised? If the answer to these questions is “no”, chances are that you have now had weeks of unending alertness and your body and brain have had enough. Not to mention juggling work, finances, extended family who may just add to the chaos. So… what’s to be done?

The first thing I would suggest is to throw out the “should” book. The stories we tell ourselves of what family life “should” look like. In this book, the holidays are so often portrayed as a blissful time with siblings playing happily together, parents watching on with tender smiles. We need to pay attention to what our children and we need – whatever that may look like.

In my case, going away on “holiday” was never an option. The stress of transition, the difficulty in managing medical supplies and the uncertainty of what that holiday might look like meant that going away was absolutely not worth it.

Our three children had very different needs, so we tried to meet them as and when we could. Mostly we stayed home and tried to keep normal daily routine going – that was the easiest way to thrive. Our daughter even had school uniform dresses because she found the change too difficult (I did buy different colours of school dresses for my sake!!). She would often plan lessons and “school” activities as a way of coping with the fact that her routine had been disturbed.

For our youngest son, the holidays usually meant badly needed rest, so he was often in bed much of the time. Anything more ended in tears of exhaustion.

And our eldest thrived in holiday times. He found the routine of school dull, unchallenging and restrictive, so the freedom of the holidays was a relief – IF he was given complete control! And he often found the first couple of weeks very difficult as he managed the change from one environment to the next.

Seemingly small things allowed us to create really happy memories – one summer, we splurged on three boxes of Lego that gave us a wonderful family afternoon. Not much maybe, but it’s a memory all of us carry to this day.

Finding somewhere that feels safe and comfortable for days out, or even half days can be remarkably replenishing. Each year, I would try and save for a year’s pass to Chessington World of Adventures, or Wisley Gardens (those happened to be close and work for us). In fact, we mostly used those for after school picnics, never venturing on the rides, but enjoying a space that felt safe.

Maybe one of the biggest and most challenging “shoulds” that I gave up was the notion that we should stay together as a family unit during holidays. While we did this during the summer, Christmas was the one that felt hardest. But for a number of years, we split the family because it was better for everyone. One child went to their grandparents (sometimes with one parent) and the other two stayed home. This gave everyone a break, and allowed the children to have their very individual needs met. Otherwise, how do you manage one child who cannot leave home, with another who desperately needs to get out?

We need to build a new set of stories I think, to share with each other how holidays can be so that we and future families allow themselves to trust their instincts and holiday in the way that suits them. To that end, I’d love to know how you holiday! Please share some ideas in the comments 🙂

Uncategorized

To EHCP or not to EHCP…. that is the question

And a controversial question it is. This post will most likely determine whether you run towards me and Tugboat with a smile on your face, or run screaming in horror. Both are completely appropriate depending on your experience, your circumstances, your beliefs and opinions. I would love comments, but I will not tolerate any aggression (kindness is paramount in everything I do and if I’m to inhabit a corner of the internet, I’m determined that it should be a safe space for all).

The short answer to the question is – it depends. An EHCP will not necessarily be able to provide the accessible education your child needs. For some, it’s essential. For others, a strong relationship with a mainstream school who are committed to true inclusion will render an EHCP irrelevant and sometimes even problematic. For others still, while an EHCP is absolutely necessary, the school your child needs doesn’t exist…

What is an EHCP?

We are hugely fortunate in the UK to stand on the shoulders of disabled people who have fought long and hard for rights, freedoms and legally binding support for our children. This should never be underestimated and it’s profoundly saddening to realise that there is still a need for people to fight for these rights.

In terms of education for children and young people with additional needs and disabilities, this comes in the form of “Education, Health and Care Plans” – legally binding documents that describe the special educational needs of a child and the provision needed to help them meet the outcomes that have been determined.

In theory, it’s a great system. The legislation is clear and the bar for an assessment is, at first glance, very low. There’s a but… there are actually many buts!

When the legislation was put in place, in 2014, resource did not accompany it. The implementation of that legislation is far more complicated than its writing, and local authorities have finite and seemingly decreasing amounts of money to work with. The awful result is that the system works for those who know how to work it. I’m convinced that every child who has an EHCP needs it. But far from every child who needs an EHCP has one.

Should your child need an EHCP, there are resources to help you through the process, and many consultants and private professionals who can guide you through from request to tribunal if needed. If you are in the midst of this process, search online for your local SIAS (SEND information and advice service), and use IPSEA and SOS!SEN for additional support.

At Tugboat, we can provide parent-led support through the EHCP process up to the issue of a final plan, but would signpost you to other services should you need to access the appeals and tribunal system.

Benefits of an EHCP?

There are many reasons why a child with additional needs may need an EHCP and the legislative criteria for an assessment are low. To request an assessment, you must simply prove that:

  1. HAS or MAY HAVE special educational needs or a disability and
  2. MAY REQUIRE additional support through an EHC Plan.

Sounds simple, doesn’t it? Yet in the implementation of the law, things become far messier.

If you are in the midst of this process, search online for your local SIAS (SEND information and advice service), and use IPSEA and SOS!SEN.

An EHCP may or may not be necessary for a mainstream school to put the necessary support in place for your child. However, if your child needs a specialist setting, they will need an EHCP – few if any such schools accept children without them.

Disadvantages?

As a parent who has had three children with ECHPs, I can say that an EHCP is something of a blessing and a curse. This is a system that allowed my children to access education where they simply could not otherwise. But it’s also one that they have found to be isolating and problematic in various ways.

And… an EHCP has a life of its own. The process of obtaining the initial one is almost always long and traumatic, and this tends to affect the whole family. Once you have an EHCP for your child, this is reviewed annually which can be a significant task.

One of the most heart-breaking stories I hear again and again is that of a family who have obtained an excellent EHCP which describes a child’s needs and the provision required extremely well and is absolutely individualised…. but so much so that no school feels able to meet the needs and families find themselves unable to find a suitable setting.

EHCPs are wonderful and essential to meeting the need of many children. But it’s really important to realise that our children live in a very imperfect world. Even if we are able to create a perfect educational provision, they will eventually leave that and enter the messy society we all know. And transition from EHCP to “nothing” can be brutal…

Conclusion

EHCPs can feel essential for many families, because they provide a legally binding document that in theory can ensure our children’s needs are met. Often, this is a result of breakdown in relationships with the school such that families are left feeling unheard and children become trapped in their additional need and disabilities.

The important thing to take away from this post is that EHCPs are a very necessary part of the SEND system. If your family needs one, you will benefit from support to navigate the process, especially to ensure you keep hold of “family life” in the midst of a stressful system.

However, there is a great deal of support available from schools and other systems for children with additional needs without an EHCP, which is far less spoken of and yet is the only option for the vast majority of our children.

I’d love to know what your experience of EHCPs has been… and maybe more importantly what support your child has had without one. Comment below 🙂

Uncategorized

Life and Hope…

One of the most important messages I want to give those of you who find Tugboat, is that life can be good and hope is always worth looking for.

So I’m going to share some of my personal stories on this blog as I go – to give you some very real examples of life with disability and additional need, and how it is possible to find a way to “good”.

Big news for me! I recently became a grandmother! My amazing daughter has complex needs. She needed a special school, and even that didn’t work out. It’s fair to say that she has had some really dark times.

And yet…. at the tender age of 20, she has left home, found herself a rented flat, navigated employment, benefits, household bills AND found the love of her life and had a planned baby!

The new family is doing so well and I’m incredibly proud of them. She is already a remarkable mother, beautifully responsive to her baby’s needs and communicating to nurses, health visitors and social workers like a pro.

Neither of us would have believed this even three years ago – and yet here we are! Hers is really a story of hope fulfilled.