Author: Karen

I started to write about autism and what I’d do if I had an autistic child. Then I stopped, because unfortunately, the waiting lists are such that the most likely scenario is that an autism diagnosis comes after a substantial period of waiting and trying out things that might help in the interim period. I will write about autism separately, but I think the more logical place to start is by thinking about what I would do if I had a child and I believed ‘something’ wasn’t right, but wasn’t sure what it was.

I wrote a bit and in the process of writing realised that the topic is too complex for one piece of writing and that I’d need to divide this by age of the child at the time you first identify problems. I’m going to start by writing about the youngest children. I’m not specifically writing here about children who were admitted to NICU as newborns where you’ve known about their difficulties since birth or soon afterwards. I’m also specifically thinking about the context where you’re worried about a small child’s ongoing development, rather than the sort of problem where you’d be seeking speedy medical help. I’m also not writing here about a situation where you feel at breaking point or unable to cope.

With children under the age of approximately three, my initial focus would be searching for a medical diagnosis. For some of these children once a diagnosis is made and treatment is given, they can ‘catch up’ on parts of development where they are ‘behind schedule’. For others, when a difficulty presents this young, it’s likely to be quite a significant one warranting a medical diagnosis or at least a thorough exploration to see if there is one.

I think it’s important to remember in these circumstances to keep an open mind; you might suspect autism, but other conditions can present in similar ways to autism or can be present at the same time (ie. some deaf children can have poor social skills, some children who experienced abuse with their birth parents may have a complex presentation including autism, other developmental problems arising from neglect and attachment difficulties). Not everything is autism and is important that developmental language disorders, for example, aren’t missed. It’s also important to remember children are individuals who develop at different rates and to not over react when a baby or toddler is a bit slower than expected with the developmental milestones. So keep an open mind and don’t narrow your focus too quickly.

Secondly, you can easily read online about missed diagnoses because medics over apply the concept of “if you hear hooves think horses and not zebras”. You might well be the person with a child who has a rare condition, but you should still start by thinking about the most common ones. Go looking for zebras once you’re sure there aren’t any horses.

At this inital stage, there’s a choice to be made between observing and gathering evidence and trying to put in place things you can to improve the issue yourself and leave structured evidence gathering until you’ve tried out some other things first and found they haven’t helped. Alternatively, you might try to do them both together.

It’s difficult to decide in the abstract which option will be best. My instinct is if there is something that is a pressing issue, that’s upsetting people or causing people to sleep badly and so on, it’s worth having a go at addressing it first, but to set yourself a time limit. Once your child has been seen by a GP, the chances are they’re going to be on a waiting list that could be a variable amount of time. It’s unlikely the first person they see is going to be able to give them an immediate diagnosis. This means that you will have time after you’ve started the process with the NHS to keep trying things yourself and at that same time that whether or not you want more time to experiment with solutions, you will need to find ways to manage until such time as the medical processes catch up with you.

Evidence gathering

Keep a diary, note how your child’s presentation is different in different places (your home / a relative’s home / a supermarket / a park) and at different times – how are they different after you’ve collected them from nursery. If there are meltdowns or behavioural incidents (or seizures / other events that appear to be medical) take videos and photos. Work out an approach for evidence gathering that fits with the time you have available – you might find, with an older child that more detailed notes for one week out of each month gives you enough data. You aren’t necessarily going to share the evidence you’ve gathered in its raw form with anybody. Its use is, at least initially, so you can say, confidently “3 days out of 5 when I collect them from nursery they are exhausted, tearful and don’t want to do anything” or “out of six occasions when we’ve been to Lidl, they’ve had a meltdown in the shop or shortly after we’ve left on five of them”. If you can achieve this level of detail, it will help you communicate your child’s needs accurately to your GP and ideally displace any suggestion that you are an “over anxious” parent. For this reason, a short period of evidence gathering is likely to be beneficial in nearly all cases.

Aim for as much objectivity as you can in record keeping – don’t look at a previous record before writing the current one to avoid influencing yourself. If there are other adults in your household or who regularly care for your child ask them to help with record keeping too, to see what picture emerges. You might find one problem consistently with one adult or no particular pattern.

Video evidence of peculiar behaviour is worth taking so that it can be shared with medical and / or educational professionals in the future and gives you a baseline. You might catch seizures or other physical medical problems as well as difficulties with language. Absence seizures can be very disruptive educationally, so it’s worth making some effort to catch that sort of thing on camera.

From the perspective of checking your child isn’t in pain they can’t communicate about, regular visits to the dentist are a good thing and ideally should be started at a less stressful time so that you try to avoid your child becoming scared of dentists.

It’s nearly always worth taking a child to see an optician so that any visual problem can be found, because they’re often simple fixes with glasses and / or contact lenses.

If your child attends a nursery or goes to a childminder sharing your concerns with them and seeing if they match what’s happening with them is important. To some extent it doesn’t matter if they do as children presenting in different ways in different settings can itself be evidence of an unmet need. But you want to know.

Things to try

My focus would be on what was most distressing to my child or what was hindering my effectiveness, so problems with food, sleep and communication would be the first places I’d look.

I’d have a low threshold for finding an HCPC registered dietician to help me if I had a child who wasn’t eating or was only eating a limited range of food and couldn’t get a fast NHS referral. A lot of published information (both online and in print) about nutrition is nonsense and I’d want to try to find somebody with an understanding of the science so that I could avoid trawling a lot of useless content to identify the useful nuggets. I would be avoiding taking nutrition advice from anybody other than an HCPC registered dietician. Children who aren’t getting a wide enough range of foods over the longer term may become deficient in particular nutrients. My aim in seeking advice would be to help my child broadly eat enough nutritious food so that they have enough energy to grow and play and to ensure meal times aren’t stressful.

If there’s a small child who is awake when they ought to be asleep overnight they won’t have got their proper allocation of sleep for the day and nor will the adults. Sleepy people are very often grumpy and less patient with each other. My aim would be improving the total amount of sleep everyone gets and I might well seek advice from somebody working in this area. This isn’t a regulated area, so finding a suitable adviser may involve a bit of guess work and seeking personal recommendations.

My next focus would be speech and language therapy, because a child who cannot communicate is likely to become frustrated and sad. If we can improve the communication, that is likely to make everything a bit easier to manage. There’s a window of ‘language learning’ time for young children that you don’t want to miss, if you avoid it – you will hear it said that children who aren’t talking by the time they’re five probably won’t be able to speak. Improving the communication might involve teaching the adults around the child more skills around how to communicate or introducing some adapative and augmentative communication equipment rather than necessarily lots of direct work with the child. So it is worth looking at a one off speech and language therapy assessment independently, even if you aren’t in a position to fund ongoing therapy privately.

Generally young children with conditions like cerebal palsy are identified by the NHS and some support is put in place without families having to argue too much at the initial stages. If I had a child with some kind of milder physical disability that hadn’t been identified early, I would look towards an independent physiotherapist, for a number of reasons. Firstly, I might have spotted something that can quickly be improved with a short course of therapy rather than something life long and that’s worth trying. Secondly, it’s less common to find physiotherapy on EHCPs. It’s entirely possible, for the right child, for physiotherapy to be in Section F of their plan, but compared with speech and language and occupational therapy, it’s less likely to be there. Thirdly, a physiotherapist is likely to be able to give me advice about activities that will support my child’s development that we can work out how to incorporate into our week. Very often physiotherapy for a small child is meant to be supplemented with activities like swimming, gymnastics, trampolining and so on and some professional advice on which activities to pick at an early stage would help.

Occupational Therapy is probably next on my list where I have a child who needs to be taught different ways of doing things or where we need help with equipment or where there are obvious difficulties with sensory processing.

Even though there is uncertainty about the child’s underlying diagnosis at this stage, all three areas – SALT, OT, Physio should be able to provide recommendations to support in the interim.

What to do next

Evaluate the position and let the evidence lead you. You might discover that what you thought was a problem isn’t actually one, or have worked out a way to improve their sleep which has improved their behaviour during the day. That’s a success and doesn’t mean you were wrong to have looked at the problem in detail. Put the evidence to one side and carry on. You may find the same or a different problem emerges when your child is older and now you have the ability to talk about it historically.

If the evidence leads you to the conclusion that there’s a difficulty you need further help identifying and/or addressing, now is a time to see a GP, because the evidence you have will enable you to explain what you’re worried about in detail. They should be able to refer your child to a child development centre / paediatrician who can investigate further. They may also be able to refer to speech and language therapy / occupational therapy / physiotherapy, but that will depend on local arrangements ie. referrals there may usually be made from the child development centre. In some areas a Health Visitor may also be a useful first contact and able to make some referrals.

Medical and educational processes for obtaining support can operate in parallel. Often a medical diagnosis can help guide the educational support needed, but it is tautalogous – no, you don’t need a medical diagnosis to obtain an EHCP – you need evidence of what they need to learn that’s additional to or different from what other children of the same age need, but very often the way you work out what they need in order to learn starts from a diagnosis.

In that waiting period I would continue to try to keep recording evidence, in a sustainable way for me, so that I could talk to medics and other experts about what’s going on for my child in an up to date way when we’re eventually seen.

I would be keeping the evidence in such a way as to support a claim for Disability Living Allowance, if the difficulties last for three months and are expected to last for at least another six months.

I would be looking at the “Things to try” section above and considering if any of our difficulties are sufficiently bad or waiting lists are particularly long that I want to try one or some of them.

It’d also be useful at this point, if you can, to ask relatives about any known conditions in the family to help you answer the family history questions in due course.

One of the tricky things about this period is that there is a huge amount of uncertainty that isn’t going to go away until your child has been seen by somebody. It’s possible you’ll see a specialist and they’ll say ‘nothing to worry about’ and you’ll be relieved (or alternatively, upset because you can see something is wrong). It’s possible you have a diagnosis in mind and you’re right. It’s possible you have a diagnosis in mind and you’re wrong. And there are many other possible permutations. Think about how best to look after yourself in the uncertainty. This might involve finding a distraction or an enjoyable activity for yourself, or it might mean finding yourself a counsellor / therapist. It might be that some of the suggestions below around finding other families in similar positions helps with the uncertainty.

Now is a good time to do some research into:

– what local SEN groups exist

-any local activities geared to disabled children (this is one place where your LA’s ‘local offer’ might be useful – they often identify specialist sports and other activities for disabled children). Your child might be too young for most at this stage, but you have the opportunity to investigate and see which ones you like.

With both of these you are looking for activities that might suit your child and social connections for you with families in similar situations. You might end up not getting on with some of the people you meet – that’s fine, keep looking and try different groups and activities till you find some that work for you. You don’t need to avoid mainstream activities but you may find more in common with other families of disabled children – I think the classic example is that parents of children with poor communication skills may find it very hard to tolerate parents of children with reasonable communication skills complaining about their children saying ‘no’ all the time. The realities are different for families in both situations.

It’s also a good time to do some research into:

– charities and other organisations specialising in the conditions you suspect your child might have – look both at the national ones and at the smaller more regional or local ones.

– charities that help families where there isn’t a specific diagnosis and charities that generally help families with disabled children.

You’re looking to the charities for information, which may be more up to date and comprehensive than that provided by the NHS and perhaps for diagnosis specific support groups / talks, so this is worth doing, even if you’re not looking for grants and you don’t need another regular commitment in your diary.

If there’s a very long waiting list to see the relevant NHS clinic, I’d make enquiries about seeing someone privately, taking care to ensure that the private service worked with very young children and could replicate the multi-disciplinary approach you expect to see in the NHS. At this age, I’d be unlikely to seek a private medical diagnosis because a one off diagnosis is unlikely to lead to me being better able to manage the situation in and of itself and it is likely to be better to wait for the NHS and / or to wait until involving an independent Educational Psychologist makes sense.

 

 

 

 

 

You see a lot of writing suggesting people should be careful about writing about subjects they don’t really know about it. What I’m writing now is probably adjacent to my lane, because you don’t practice in this field for as long as I have without picking a few things up. I will do similar posts for some other areas of need in the future, but this one is about dyslexia.

The reason I’m starting with dyslexia is that there is a really big spectrum, from people mildly affected to people very significantly affected. Experience tells me it runs in families. If you are dyslexic, it’s sensible to work on the basis that your child will share your difficulties. Where you have a child who is dyslexic without comorbidities (eg. autism, dyspraxia), they can very often manage in school without needing an EHCP, but with some additional support. In this context in can be cheaper to ensure the school are making reasonable adjustments in accordance with their obligations under the Equality Act 2010 and to put in place some support privately.

My priority with a young child would be making sure my child had access to information in other ways eg. audio, video, adapted formats of books, so that they can carry on learning whilst they learn to read and/or while reading is a stressful and difficult thing for them.

I’d look at Meares Irlen/Scoptopic Sensitivity – coloured overlays might help / tinted lenses might help and both are very difficult to get funded on an EHCP. They also might not help at all, but discovering that is itself useful.

I’d start my child off on a touch typing programme at home with the aim of it eventually becoming an effective means of recording for them. If that wasn’t effective, I’d look at dictation software as soon as my child was of secondary school age, as younger children’s voices can’t always operate this software very easily. Schools only have so much curriculum time, but I do wonder why touch typing isn’t taught generally. We aren’t quite at the point where voice activated software and dictation software can fully replace typing and many people will eventually do jobs where being able to type fluently is an asset.

Dyslexia itself isn’t usually diagnosed in children under the age of about seven. I would seek out a diagnosis as soon as the testing is likely to be reliable. Once I had a child with a diagnosis I’d help them to join libraries for “print disabled” people so that we could more easily obtain books in alternative formats, because again, one of my areas of focus would be on them being able to consume the information and stories that many people read.

I’d probably buy my older primary aged child a laptop and some of the specialist software for dyslexia eg. Read & Write Gold, so that they had effective (and age appropriately safe) access to the internet as well as other standard software for doing homework etc. Once they had a degree of competence at using the laptop, I’d seek agreement from the school that my child be permitted to use their laptop at school. Laptops and specialist software can be funded under an EHCP, but unless my child needed complex equipment ie. beyond a laptop at £500 or so, I’d rather own the laptop and have it available at all times, rather than leave it to the LA to provide.

I’d keep an eye on the JCQ’s access arrangements information. For some access arrangements it’s necessary to show that they represent the pupil’s usual method of working. I would be liaising with the school to make sure they were cooperating (ie. not thwarting my child from using a laptop for writing tasks).

I would consider whether to withdraw them from RE in order to create space in the school day for them to catch up on other work. With a younger child I’d impose time limits on homework, so that they’re not trying to work long into the evening when they’re too tired for it.

I’d think about out of school activities that rely less on literacy that might be self esteem supporting. I’d think about this with a younger child, but it would become more important as they become aware of all of the other children at school being able to read.

I’d consider buying in some weekend tutoring support from someone with an additional qualification in dyslexia/SpLD. CReSTeD also accredit “Teaching Centres” which I would consider as well as individual additionally qualified teachers who advertise their services.

I would consider the state funded mainstream schools recognised by CReSTeD for their dyslexia teaching and whether a house move to enable my child to attend one of these schools was a viable option. Given how few of them there are and the need to have a child who fits into a category of needing some level of SpLD awareness through their school day but without needing to be in a specialist setting, it’s unlikely this would be an option I’d pick, but it’s certainly one to consider.

If despite some out of school tutoring support, the right technology and plenty of access to sources of information and stories that didn’t involve reading standard print, my child was consistently unhappy or not making progress, then I’d seek an EHC Needs Assessment with a view to an EHCP.

Following on from the last post about pandemic preparedness some time ago, which was getting a bit long, here are some other things to consider as part of low key preparation for another pandemic.

If you / your teenager is thinking about university, always keep in mind the possibility of doing an undergraduate degree with the Open University and considering a more traditional university experience for a Master’s course at a later date. Other universities may have good online / distance learning options that are worth looking at – far better to be on a course designed to be taught in this way than one hastily converted. Assuming you get on well together and there’s enough space, living together and studying from home may well be more satisfying (and less expensive) than living in university halls or a shared house whilst still doing all of your studying online. It may need to involve some deliberate resetting of expectations of each other and how you interact. If you’re in a position to do very advance planning and own your own home, creating a “granny annex” could provide a good option for a young adult studying from home.

If you have a teenager, think about how they’re going to take GCSE + other exams. If there’s the potential for a COVID style teacher grading system, they may be best off remaining on the school roll, notwithstanding you may need to deal with an attendance officer. If not, or if you are planning on longer term elective home education, you will want to think about ways in which your teenager can study for accredited qualifications. This point particularly applies to older teenagers looking to take A levels or other qualifications – can you find good online teaching, with the ability to enter students for exams?

Find out about the local elective home education groups in your area and nationally – who do you get on with? What’s on offer that works for you as a family?

Try to teach children how to swallow tablets – it gives you more options for giving them medicine.

If anybody eats a restricted diet due to ARFID or similar reasons, think about ways of managing this when ‘safe’ foods are less available. If the next pandemic is an avian influenza – H5N1 there will be shortages of eggs, milk, other dairy products, beef and consequent shortages of all the other things people go to as substitutes for them. You might be able to work with them to increase the range of foods they consider ‘safe’. You might be able to create a big pantry to store lots of their non perishable safe foods.

If you can afford it, make sure there’s at least one computer per person of school age and older and a robust enough broadband connection to cope with everybody being on video calls or watching videos or playing video games at the same time.

This is a longer form version of a conversation I was involved in on BlueSky, shortly after BBC publicity about children being abused at a special school.

If you are looking for a school for your child, these are some of the things to be considering. Very few of them are in and of themselves deal breakers, you need to be looking for patterns rather than individual red flags, which often have innocent explanations.

– Don’t over rely on Ofsted reports. They are snapshots. We’ve all been made aware of schools sending particular children on school trips during an inspection or temporarily excluding them in an effort to restrict what the inspection team see. The Ofsted report may be correct on the basis of what the team saw at the time and the school still have problems. Also note that sometimes Ofsted go the other way and raise concerns about perfectly proper practices in special schools (like locking doors so children can’t escape or having restraint as an ongoing part of a specific child’s behaviour management plan).

– Do look at other inspection reports where they’re available. Residential schools usually have a separate inspection of their accommodation. Where the accommodation is a children’s home (usually because it offers 52 week accommodation) the inspection report can be more difficult to find because addresses aren’t usually published for children’s homes on their Ofsted reports. Look for CReSTeD reports and any separate inspection report if you’re looking at an independent school.

– Does the school know who it caters for? If the school doesn’t have a clear understanding of which children it should be taking, it will end up with a mix that probably won’t work well. A mixed intake with separate classes / streams may work – one Autism stream, one a primary SEMH stream. Be wary if the school is vague or desperate to take your child (independent schools, including specialist SEN schools will want to keep their numbers up to make their budgets balance and some may be tempted to take children who don’t fit what the school does best).

– What’s the staff turnover like? High levels of staff turnover are invariably a sign of something being wrong with a school. This is unlikely to be mistreatment or abuse of children, but often a problem with the senior leadership team or owners of a school meaning that the teaching and organisation will be less good. Schools that are losing lots of experienced staff lose their institutional memory and skills in working with their pupil cohort.

-If it’s a residential school, find out what the arrangements are for visiting. Can parents come and take their child out for dinner or for a walk around the park? Even if these aren’t feasible activities for you or things your child would enjoy, you want to understand the school’s attitude to families visiting. If you have a child with PMLD or significant behavioural issues, SLD and Autism it would be reasonable to expect the school to facilitate you visiting on site, with respect for the privacy of other children. It’s reasonable to expect a school to generally discourage visiting during teaching hours and to want to maintain the children’s usual routines, particularly for cohorts of Autistic children, so a school saying ‘if you go out for dinner, please be back by 8.30 / 9pm, so we can start the bedtime routine’ isn’t being unreasonable.

-Where you are in a Tribunal case, the preparation of a transition plan is likely to be important as part of the case, particularly where your child has been out of school for a period of time. Once you have confirmation the placement will be happening, it’s worth arranging to talk to the school to go over the details of the plan (of the sort that are too mundane / trivial to have been decided earlier). You ideally want a shared understanding of what you’re expecting to happen as your child goes through the transition plan and starts at the school. In some instances it makes most sense for the child to start going to school, full time immediately, but knowing that this is a big change that will take some adjustment. In other cases a gradual transition plan will work better. Sometimes you can predict a honeymoon of compliance / ‘good’ behaviour that will end in a month or two once the child feels comfortable enough. You want to have an understanding before you start of the range of expected reactions.

-If you are tired / busy / worn out – either after a Tribunal case or because a placement has been arranged quickly in an emergency, arrange for a meeting with the school after you child has been there for a couple of weeks – by this point you ought to have caught up a bit on sleep so that you’re able to engage with the school in planning and in asking them more questions.

-Keep a diary as your child starts at the school, noting their behaviour when they come home and what they say. Lots of things make children more vulnerable to abuse and some of those reasons will be the very reasons they’re in particular schools in the first place. If your child is currently a poor communicator, think about how you might tell if someone is treating them badly. For some young children or older children with physical care needs it may be appropriate for you to see them undressed, giving you an opportunity to spot bruises or other marks the school haven’t told you about.

-If it’s a residential placement, work out your pattern of contact with your child. This may be different to your contact with school staff. It may suit your child to speak to you Tues / Thurs evenings or similar rather than every night. But you may initially need daily or more frequent contact with staff until you’re confident they know your child well enough.

-A good school should be teaching children about their rights in ways matched to the children’s level of understanding. ‘No hitting’ is something many children can understand as is ‘tell somebody if someone hurts you’. Find out about the school’s plan for teaching this bit of PSHE.

-Don’t conceal a camera or microphone in your child’s bag. If you’re worried enough about what’s happening at school to be thinking about this, the time for evidence gathering has passed. Arrange to go and observe your child’s class from a place where your child can’t see you. This may give you some insight as to the interaction between the teaching staff and the children – it may be clear there is a problem with the teacher or that there’s miscommunication and your child hasn’t understood something. If you’re still worried arrange a meeting with the school. If it’s more serious than that arrange for an Emergency Annual Review of the EHCP.

-Where you have serious concerns that your child is being mistreated at a school, you can expect your LA to be more of an ally than an opponent. No LA wants to spend money on schools that are ineffective or be party to a situation where children are being abused by teaching or care staff. You can report the mistreatment as a safeguarding concern to children’s social care, as well as getting the education department to sort out an Emergency Annual Review. You may still end up with an argument with the LA over the next placement, but it is likely to be an easier argument – your child had the needs they had requiring the initial placement and now they may have additional needs arising from their mistreatment, so they need the same sort of placement but in a functional school.

KJM Legal has had accounts on Facebook, Instagram, LinkedIn and Twitter since 2018. We’ve never been terribly active on any of them. The broad landscape of social media is continuing to change (I’m old enough to remember when MySpace was social media and to have not been able to open a Facebook account because I wasn’t a university student).

The ways social media is currently changing, I’m not convinced it’s useful for KJM Legal to make use of Facebook, Instagram or Twitter other than to point to content here. On the one hand, these are currently mainstream, readily useable sites with apps that work on Apple and Android phones. I know there are specific groups on Facebook that try to help families of disabled children as well as groups for disabled people, which are currently useable. On the other hand, the way these three sites are now being run (or are about to be run) poses risks to LGBTQ+ people and disabled people. Once somewhere becomes less safe for one marginalised group, the likelihood is it will become less safe for others. And even if it remains ‘safe’ enough, it’s unclear how useful it will remain, as more people move elsewhere.

Putting time into creating content on a site where I don’t have editorial control is always a bit risky; I have seen people lose accounts they rely upon for business purposes because of automated decision making deciding their content was inappropriate for a site. Pointing to content here seems like the best available option, bearing in mind people will still be using Facebook, Instagram and Twitter because they’re ‘easy’ and ‘just work’, which is important when time is limited.

I am not aware of similar concerns about LinkedIn.

KJM Legal now has a BlueSky account. At the moment BlueSky seems possibly more suitable for engaging in conversation.

I’m not adverse to having a KJM Legal account if I can identify a Mastadon instance that’s ok with business accounts. I’m also not adverse to creating a KJM Legal Discord server, if I ever have clients who’d actively like to be put in touch with each other.

As an education lawyer, my position prior to COVID starting would nearly always have been that it’s better for a child to be within the ‘education system’ rather than electively home educated. This is because there’s no way to force an LA to help you with elective home education, so you cannot expect to mix and match LA funded provision with your own. [This is the case notwithstanding that there are times when LAs can be forced to fund education otherwise than at a school]. Generally, LAs should be held to the statutory duty to make suitable educational provision for children with SEN. Opting for elective home education lets the LA get away with doing nothing.

Secondly, for most children with EHCPs, there is a need for specific expert input into their education – they need a SALT, an OT, a Teacher of the Deaf, a QTVI and so on. Elective home education is likely to reduce a household’s income considerably to accommodate an adult being available to supervise / teach the child meaning there will be less money around to buy in these services privately. Obviously NHS based services will be available, whether a child is electively home educated or not, but may be very patchy and with very long waiting lists.

Thirdly, for quite a lot of children with EHCPs, learning how to interact with and communicate with other children is part of the special educational provision they require. In specialist schools this is facilitated by teaching staff working under the guidance of SALTs and there are opportunities integrated into the day for the children to be taught and to practice these skills. With elective home education, there are often family run groups covering particular activities that are hard to do at home that happen at set intervals, which allows some opportunities for social interaction. These are unlikely to happen each day of the week. It is also possible for home educated children to join out of school sports clubs and other organisations like Scouting and Girlguiding. For some children, it may be better for them to work on interaction with other children more slowly and in the ways possible for electively home educated children, but it is something to be considered carefully.

Where elective home education becomes an option that should be seriously considered on at least a temporary basis is when there is a public health situation that is not being properly managed. We are overdue an influenza pandemic, on the basis of the historical timing of recent ones. That doesn’t change just because we’re in a COVID pandemic. At this point, in May 2024, there are concerning reports of avian flu H5N1 being found in the udders of American cows with at least one farmworker infected with it. There are also reports of H5N1 being found in American wastewater. H5N1 has been jumping around between birds and some other mammals (cats, mink) for maybe just over a year. The more it jumps around between birds, mammals and back to birds and so on, the greater the potential it will make the jump to being easily transmissible between people. [At the moment, as far as I can tell, you are at little risk of catching H5N1 unless you are handling dead birds or are around infected herds of dairy cows and exposed to aersolised milk during the milking process].

If H5N1 makes the jump to people, it won’t be immediately obvious because it takes time for people to become ill and more time for them to become ill enough to seek medical care and further time again for those who are going to be seriously affected by it to be hospitalised and for some of them to die. It will take time to work out that H5N1 is what people have (rather than COVID/MERS/some other condition). It is likely that H5N1 will have a substantially higher case fatality rate than COVID – I see estimates of up to about 30%.

Schools will close if there’s an H5N1 pandemic. There won’t be enough well staff to keep them open safely, even if there is political desire to avoid closures. This is a time when you want to be ahead of the curve, to keep your whole household at home as much as possible.

If things proceed as COVID did, it is likely to be safe enough to keep your child at home on the basis of the virus and allow the school to record it as ‘unauthorised absence’, with your child remaining on the school roll for so long as there is no pressure on them to return to school whilst there’s a lot of virus about. If the Government is very slow to respond, you may find yourself with a school trying to manage your child’s absence as if it’s truancy. At which point removing them from the school roll may be the best course of action, unless they have an EHCP (you wouldn’t want to have to fight to ‘recreate’ your EHCP the otherside of the worst bit of pandemic, after you’ve already gone to all the effort of getting it right)

If you have a child with an EHCP attending a special school, removing them from the roll is not as simple as it is for all other children, but you are unlikely to experience much opposition, in these circumstances, to keeping your child at home without removing them from the roll, as many of the children attending special schools will be particularly vulnerable to flu viruses and the school will be tactitly content to have fewer children around to reduce the numbers of people who can pass germs around.

If you already have social services involvement, it will be best to try to get some advice before removing children from a school roll, as unfortunately removing children from school rolls and moving house is a known tactic of abusive parents, because it ‘hides’ children from appropriate interaction with public services. You will want to be clear why it’s unsafe for them to be at school, to indicate whether you are planning to move house (and at this point you might be, if your ‘lockdown’ plan is to join relatives in a big house more rurally etc) and probably to invite the social worker to come and meet you and the children outdoors.

This writing is prompted in part by an argument I had with someone on Facebook – who knew it was useful for something.

When you are operating in a Court/Tribunal context, your decision making (including your evidence gathering) needs to reflect what the Tribunal is likely to find persuasive. You want, so far as you can, to answer the questions they are likely to have before they’ve asked them. This means a number of things.

1. Tribunals are not usually sympathetic to arguments for provision that lacks an evidence base, is very new or is otherwise controversial. Think very carefully before including requests for things that might be thought of as “weird and wacky” in an EHCP, because you do run the risk of making yourself look less rational and everything you say being subjected to a higher level of scrutiny. This isn’t ‘fair’ – especially when you are an expert in the topic and you are expecting mainstream science / education professionals to catch up with it in a couple of years time. Some of the time it can be easy to leave things like this out because they aren’t really educational (even using the very wide defintion of special educational provision that the Children and Families Act uses) – hyperbaric oxygen / raw food diets etc can be kept as something you do independently and left out of the EHCP. If you really do need to include something a bit “out of the ordinary”, ask your own independent experts to comment on it and why it works / is likely to work for your child, when more mainstream options are unlikely to work. Note, that you’re always asking independent experts for their professional views – they may disagree with you. In Tribunal cases you generally have a choice about whether or not to serve an expert’s report [this isn’t the case in other jurisdictions] and you will need to consider carefully whether your child is better served by you compromising on the unusual thing or by not using the expert’s evidence. Pick your experts carefully and listen to their advice.
2. Children are people separate from their parents. In the context of Tribunals making decisions about children with special educational needs, Tribunals make decisions based on the evidence available to them about what is right for the child. Arguments along the lines of “this is my child, we’re doing x because I say so” aren’t going to be helpful to you in arguing about educational provision with a Tribunal, especially when you’re advocating for something that looks unusual. It isn’t like making decisions for yourself, where you have considerable scope for doing what suits you because you consider it’s best for you regardless of what anyone else says.
3. Applied Behavioural Analysis is in a special category. [It’s a specific type of intense, structured input, usually for very young autistic children] It’s always been somewhat controversial, though it’s been possible to get Tribunals to order it on the basis of evidence that it’s working for a specific child and there’s a plan for it to come to an end in due course with the child integrated into a school. What’s relatively new is that there are now autistic adults online explaining that the practice is abusive and they have suffered from it. Tribunal panels can read the internet as well as the rest of us: they will be aware of this additional bit of controversy. If you have evidence ABA is right for your child, in your specific circumstances and that there isn’t any other suitable provision, you would be well advised to have your independent Educational Psychologist comment on your child’s level of distress when seen working with one of their ABA tutors as well as to have your Consultant/Case Manager comment on how ABA in 2023 differs from that around in 2000, how they support distressed children and enable children to express their feelings.

There’s new guidance about how to address judges in some Courts and Tribunals, that applies to SEN Tribunals, which are part of the “First-tier Tribunal”.

We now all have to get used to calling judges “Judge” rather than “Sir” or “Madam”, whilst specialist members (“wing” members or ‘non-legal members of Tribunals’) continue to be addressed as “Sir” or “Madam”.

“Judge” has been a term used to verbally address English judges by people (mostly barristers) who encounter them outside of Court rooms, for a long time. Inherent in its usage is that the person being addressed is another lawyer, which will be why it’s not being used for specialist members.

A potentially useful phrase is “Judge, I wonder if it would assist you and your colleague(s), if I….”. The important bit is “you and your colleague(s)” as it gives you a less clunky/clumsy way of addressing your whole Tribunal panel at once than any of the alternatives.

When looking at most special educational needs questions, GPs aren’t able to be terribly helpful, because the issues that arise are around the impact on education rather than on the correct medication to trial or similar. [This is a bit of an oversimplification, as there are areas where a GP would be able to advise eg. that a child, due to their medical conditions is likely to tire quickly and need an afternoon nap or rest period before more lessons, but it generally holds true]

Where GPs can help is with related issues:

1. If you are caring for a disabled relative, it’s worth asking your GP to note that you are doing that. This applies whether you’re caring for a child or an adult (or as some people do, both ie. their child and an elderly parent) They are meant to offer eg. more flexible appointment arrangements to carers as well as annual influenza vaccinations. At the moment, unpaid carers are included as part of JCVI’s priority group 6 for COVID vaccinations, so there is some advantage to you in your GP being aware of your circumstances.
2. It’s important your GP knows your occupation, as some conditions have occupational risk factors meaning priority for vaccinations. In respect of COVID, if you are employed by a disabled person as their PA, (whether independently, via a personal budget or direct payment) you fall within JCVI’s priority group 2 for COVID vaccinations, along with all other health and social care staff. [Yes, there’s an argument to be had about the ethics of prioritising paid care staff over unpaid carers, but for now this differential treatment is where we are]
3. There’s certainly talk at the moment of prioritising adults who are key workers for COVID vaccinations at a later stage in the process, so if you are a critical worker it’s worth writing to your GP to make sure they have your occupation recorded correctly and to give them some understanding of how much in person contact you have with people as part of your work.
4. Children aged 16 or 17 and adults who are Clinically Extremely Vulnerable fall within priority group 4. Children aged 16 or 17 and adults who are Clinically Vulnerable (scroll down to “moderate risk”) fall within priority group 6. It’s arguably worthwhile attempting to arrange any overdue chronic disease appointments to make sure you/your child is definitely on your practice’s radar as falling within priority group 6. Priority group 6 also includes residents in residential care settings, which would include specialist schools as well as care homes, even where residents don’t have conditions that would put them in priority group 6 individually. Usually where people are living in a residential care setting they are registered with a local GP, but sometimes it’s easier for them to be registered with a GP near their usual family home. So if you have a child in such a setting, it’s worth making sure their GP knows this.
5. At the moment, there’s very limited recommendations for vaccinating children under 16 – see pages 13-14 of Chapter 14a of the Green Book which limits the recommendation to children with severe neurological disease, who frequently get respiratory infections and who spend time in specialist residential settings for children with complex needs. If you have a child who falls within this category, it’d be worth telling their GP that you want them to have the vaccine as soon as it’s available.
6. GPs are meant to co-ordinate provision and have complete sets of our medical records. When you have obtained independent reports for your child around an aspect of their SEN, it is usually worthwhile sharing these with your child’s GP, even if they won’t affect any medical management immediately. They may be relevant to your child in later life.

I’ve recently had a couple of enquiries from people looking for help with residential conveyancing and will writing. Although conveyancing is part of the Legal Practice Course and will writing/probate is something I did a little of as a Trainee, I have very limited knowledge of either area.

Lawyers specialise early (arguably a bit too early in a way that means a lot of us miss out on seeing some of the connections between fields). But the end result is I know as much about conveyancing as most of the people reading this. I know a little more about will writing because it’s an area of law where there was a capacity test that pre-dates the Mental Capacity Act 2005. It’s also an important area to consider for parents with offspring who lack capacity to manage their own finances as part of long term planning. But I’m not somebody who drafts wills.

If you’re looking for someone to help you with conveyancing, I suggest:

• get a personal recommendation from people who’ve moved house recently.
• consider the location of the solicitor’s office and proximity to your [current] home / work locations. [this may be less important during COVID-19, where so much is being done remotely].
• use the Law Society’s Find a Solicitor search function.

In relation to will writing, I suggest:

• look for personal recommendations, but be prepared to discard them if the person doesn’t have the right expertise.
• stick to Solicitors for this, don’t go for non-regulated will writing services.
• use the Law Society’s Find a solicitor search function – look for firms with expertise in both “private client” work and Court of Protection work if you’re trying to leave money to a disabled relative who lacks capacity to manage their own finances.
• if your situation is really complex, bear in mind you may need advice from Counsel on some aspect of it.