Communication support – disability specific cards and other identifying items

This is as complete a list as I can currently compile (there are some places that have removed details of everything they sell from their websites whilst they’re closed for COVID-19 reasons). Expect this list to expand in due course and for the post to be edited. Please do draw any broken links to my attention.

Although I’d been aware of a number of these before drafting this post, the act of drafting leads me to conclude that disability or illness specific alerting cards or items are generally made for disabilities / illnesses / conditions

  • that can affect how people behave in public
  • that can cause loss of consciousness
  • that can affect how people communicate
  • that affect how people should be cared for by medics in emergency situations
  • that are really rare, so a prompt is needed for unfamiliar medics.

Deliberately omitted from this post, which is already quite long are alerting cards / other documents for particular medications or that operate in particular areas of the country – this is a condition specific list.

Headway provide a card for people with Acquired Brain Injury

Alzheimers/ dementia

A charity is working on ID cards for ataxia

Auditory Processing Disorder (at the end of the document)

There are lots of Autism Alert Cards:

The National Autistic Society’s downloadable one

ARGH card designed by autistic people for autistic people

Autism Anglia (covers Bedfordshire, Cambridgeshire Essex, Hertfordshire, Suffolk and Norfolk)

Autism Berkshire (covers Bracknell, Reading, Royal Borough of Windsor and Maidenhead, Slough, West Berkshire, Wokingham)

Autism Wessex (covers Bournemouth, Dorset and Poole)

Autism West Midlands (covers the British Transport Police nationally as well as Staffordshire, Warwickshire, the West Midlands (eg. Birmingham, Coventry and Wolverhampton), the West Mercia Constabulary (think Herefordshire and Worcestershire, Shropshire, Telford and Wrekin)

Cheshire Autism

Cumbria

Devon and Cornwall

East Sussex

Hampshire

Howgate shopping centre, Falkirk, Scotland

Kent

Leeds City

London (also used by the British Transport Police)

The Marlands shopping centre, Southampton

Oxfordshire

Pentagon shopping centre, Chatham, Kent

Scotland

South Yorkshire

Wales

Wiltshire

Behcet’s disease

Mobility canes for blind people – they also sell red and white canes for deafblind people. (there’s a relatively straight forward process for blind people to register their sight loss in the LA registers, which perhaps diminishes their need for any separate card or other small identifying object).

Cancer on board badges

Deafblind cards

Deaf children / Wiltshire and Dorset Deaf Association – for BSL users / Wiltshire and Dorset Deaf Association – for non-BSL users / Hearing Aid battery books / badges for deaf people and wristbands and related items for deaf people

Developmental Language Disorder

Diabetes Wristbands / Diabetes ID cards for insulin users only / Diabetes necklaces / more diabetes wristbands and other ID / Insulin passports

Given how hard it is to find any dyslexia specific alert cards, I suspect they aren’t considered to be useful by many dyslexics. There was, some ten years ago, a Bromley specific scheme providing a card called Helping Everyone with Literacy Problems to help people ask non-verbally for help with reading and completing forms. It is unclear to me why this scheme no longer exists; public spending cuts or it being a non-disabled person’s solution to something that wasn’t needed.

Epilepsy Action / Epilepsy Society

Heart Conditions/ Heart Failure / Cardiomyopathy

Huntingdon’s disease

Fistula wristbands/ Emergency treatment keyrings for people with fistulas for dialysis/ more emergency keyrings

Advanced liver disease / hepatic encephalopathy passport

Primary sclerosing cholangitis

Mental Health – key ring based set of cards for anxiety

Crisis cards: a generic crisis card. Central and North West London, an easy read version by Central and North West London, Dudley and Walsall, NHS Fife, Wales

Motor Neurone Disease

Multiple Sclerosis

Muscular Dystrophies

Myotonic Dystrophy

Parkinsons

Phaeochromocytoma / Paraganglioma

Prospopagnosia (face blindness)

Stroke cards/ “communication licences” for people who’ve had strokes

Tourettes

Other communication support tools

There are many different documents and other items eg. cards / badges / wrist bands available to help people communicate non-verbally. I’ve covered those specifically intended for use when using public transport in another blog post as there are rather a lot of them. It’s quite difficult to create an overarching structure to describe what’s broadly available, as what exists comes from different sources made for different and often overlapping purposes. To keep this post to a manageable length, I haven’t covered Apple or Android Applications that do the same or a similar job to these physical objects. At an overarching level there seem to be:

  • Items which prove something about the individual to someone else
  • Items which assert an entitlement to a discount / concession
  • Items that assist communication specifically with public services or other officialdom
  • Items that generally assist communication – whether because someone cannot (always) use spoken English, the information is too lengthy/detailed to be spoken and needs to be put in writing, the information is important and has to be communicated repeatedly or because it’s designed for an emergency situation where someone who would otherwise speak is prevented from doing so.

In more detail there are:

  • Typical symbols of disability that are reasonably well known: Blue badges, Disabled Persons Railcard, Bus Pass under the English National Concessionary Travel Scheme (includes Freedom Passes for London), Disabled Coachcard
  • Correspondence from the DWP eg. award letters for DLA/PIP/AA and in some circumstances ESA or about the limited capable for work (and work related activity) elements of Universal Credit. This is a prerequisite to obtaining some of the other items listed here. A4 letters are much less convenient for carrying in a purse or wallet than something credit card sized. They also contain a lot of personal information that is often irrelevant.
  • Correspondence from Children’s Services or Adult Social Care eg. an assessment of your needs, details of the services they’re providing.
  • Correspondence in respect of NHS Continuing Care.
  • EHCPs and Annual Review documentation.
  • very occasionally, documents providing written proof of registration with a Local Authority as disabled, eg. Hampshire’s yellow card
  • also occasionally, letters from a doctor, usually on an NHS letterhead, confirming something about you – that you can’t stand, queue, need a telephone, need a carer (or more than one), need someone to travel with you to hospital appointments, can’t use a telephone directory etc and things like Certificates of Visual Impairment.
  • Medical Exemption Certificates for presciptions
  • cards and other identifying items to help you show you entitlement to a discount or other concession eg. Nimbus Access Card, CEA Card, DID card – usually for these sorts of cards, to obtain the card you need to show the issuing organisation some evidence of your need for it.
  • organisation specific cards showing an entitlement / concession eg. the National Trust’s Essential Companion card, Ride Access Passes / Carer Passes for Merlin theme parks.
  • cards intended to help people deal with the police and other authority figures – some Autism Alert Cards are like this. As these sorts of cards are often created together with police forces, they are usually only issued on receipt of proof of a particular disability or condition. There are other initiatives aimed at helping people with communication problems interact with the police eg. some areas’ implementations of the Safe Places Scheme (but not all of them), Pegasus Card Scheme
  • Specifics to do with toileting – RADAR keys to open accessible toilets that are kept locked using a standard key format. Can’t Wait cards which seem to sit in an odd place – they are intended for use by people who are usually verbal to reinforce or replace a verbal request to use a toilet – with part of the theatre of the request coming from the card appearing to be official (though they’re not).
  • cards and other items to explain in simple terms that you have a particular disability or illness eg. Autism Alert cards, that are often created by the well known charities and are reasonably easy to obtain on request. Here’s another by the Bladder and Bowel Foundation
  • tools that originate from disabled adults making the things that work for them see eg. Stickman Communications, the Curly Hair Project, Codeword Pineapple, Cancer on Board badges, Doodlepeople, Sootmegs
  • tools that originate from work developed by Speech and Language Therapists, see eg. products produced by the Play Doctors, like communication fans, communication passports
  • medical alert bracelets, necklaces and other items intended for emergency communication eg. Medic Alert, ICE Communication Cards, some carers emergency card schemes, message in a bottle schemes
  • situation specific tools eg. hospital passports, Disability/About Me Passport for assisting in person communication with Job Centre Plus staff, Reasonable Adjustment Passports and Wellness Action Plans for use in the workplace – many of these tools are designed for communicating information that has to be communicated repeatedly in an efficient way.

Communication support for travelling – trains

This is deliberately timed non-COVID-19 content; sometimes it’s useful to think about other things for a while. Though COVID-19 wise, it is worth considering what is written here in preparation for non-confident public transport users starting to use it again, when it becomes available for more general use. Some people may be sufficiently out of practice that they’ll need a bit of help regaining their previous level of confidence.

This isn’t a post about English National Concessionary Passes (for free bus travel) or Disabled Persons Railcards or the equivalent ones for the National Express. I’ll write about them some other time, but they are reasonably well known.

What’s less easy to find and thus is something I want to write about is the plethora of different documents / cards / badges made as communication support aids by the various different companies that run transport services and by some Local Authorities.

This post contains a lot of links; if you notice any that become broken over time I would like to know about it. It is also a post I am likely to update and edit over time anyway as what’s available changes.

Starting with the Local Authorities; some English LAs (but by no means all) have created travel wallets in bright colours that can be used by people to indicate to the driver (or guard) on local public transport that they might need additional help or time. Some of the time they’re particularly advertised to learning disabled people or to people with ASD. Sometimes they’re restricted to adults (rather than including older children who are learning how to travel independently) At the time I’m writing, I’m aware of:

Northern Ireland, where there is a yellow access travel wallet

Scotland, where they have the Thistle Card

Wales, where there is an orange wallet scheme that runs throughout the country.

Devon, where there are orange access wallets

Durham, where they operate the Bridge Card Scheme (which also operates in Tyne and Wear and Darlington, Hartlepool, Middlesbrough, Redcar & Cleveland and Stockton-on-Tees

Hertfordshire, where there are orange travel wallets

Worcestershire, where there are pink travel wallets

These are useful so far as they go, so if you live in one of the relevant areas, it’s worth considering asking for one. It is a shame, that there is no consistency in colour for these wallets – which will make them less useful for people who travel longer distances by public transport, as they may not be recognised further away from home.

These travel wallets are usually supplied together with journey assistance cards (discussed towards the end of this page) to enable you to signal your need for assistance to bus drivers and staff on trains.

Travel support cards

Now for the travel support cards offered by some of the train operators. These look to me like they are of relatively limited use for most people, as the emphasis is on recording a name and telephone number of a friend/relative/carer/PA who can be contacted for you if you get into difficulties. Some have space to record how you would like staff to help you if you are in difficulties. This makes them potentially useful, to my mind for,

  • people who lose the ability to speak when in difficulties (whether by reason of a panic attack, high anxiety, seizures)
  • people who aren’t very good at using spoken English generally (eg. some primary BSL users, people with poorly comprehensible speech, people at early stages of learning English)
  • those learning how to travel independently who want a note of what they might ask staff if they experience difficulties.
  • some learning disabled people

In nearly all of these cases, the individual’s difficulty with communicating is unlikely to be restricted to just difficulties communicating about transport, so a separate card to show to a train guard / bus driver may not be as of as much use as a more comprehensive solution Medic Alert bracelet or necklace or a communication book or an Apple/Andoid App to support communication.

Transport operators offering such cards at the time of writing, include:

Gatwich Express/ Great Northern / Southern /Thameslink (these operators have a common card)

London Northwestern Railway

Scotrail offer both badges and a communication aid card

South Eastern Railway

South Western Railway

Transport for London

West Midlands Railway

Some other national schemes that are potentially useful communication aids when travelling.

Blue Assist Cards – allow you to create a text message on paper/mobile phone that could be shown to someone to ask for help.

Helping Hand Cards these are associated with Brighton & Hove, but aren’t restricted to that area – credit card sized cards are produced to order, to the user’s requirements.

JAM Card– intended to communicate “Just A Minute” for people who need to take a bit longer when communicating or completing tasks.

Sunflower lanyards and other items – used to indicate any sort of hidden disability. These are becoming relatively well known, meaning that they could easily act as magnets for pickpockets and other people with less than pleasant intentions. It’s worth looking at the more discrete items than the lanyards eg. the travel wallets, pin badges, wrist bands.

Priority seating

Some of the train operating companies have created schemes to issue priority cards or badges to particular groups of people who hav difficulty standing during train journeys. I haven’t included reference here to the schemes aimed at people who are pregnant. Some of these cover buses and trams as well. The ones requiring documentation probably involve too much bureaucracy for anybody who is able / confident enough to ask for a seat, as they convey no entitlement to a seat and are intended as an aid to persuade other passengers to give up their seats. But there are probably people for whom the bureaucracy burden is worth it, so it is worth knowing about them.

c2c – require certain documentation before they will issue a badge indicating a need for a priority seat.

Great Northern Rail – require certain documentation before they will issue a priority seat card

Great Western Railway require certain documentation before they will issue a priority seat card

Greater Anglia are offering two varieties of “please offer me a seat” badges at certain train stations / on request. They also offer a priority seating card on receipt of certain documentation.

London Northwestern Railway – are unclear about whether they require documentation to issue priority seating cards.

Nottingham City Transport (together with Nottingham City Council and Nottingham Express Transit) offer both “please offer me a seat” badges and “happy to stand for you badges” to anybody who wants them.

South Eastern Railway – require certain documentation before they will issue a priority seat card and badge.

Southern – require certain documentation before they will issue a priority seat card

Thameslink Railway – require certain documentation before they will issue a priority seat card.

Transport for Greater Manchester send out “please offer me a seat” badges on request.

Transport for London – send out “please offer me a seat” badges and cards to anyone in Greater London and South East England who asks for one.

West Midlands Network offer “please offer me a seat” badges and cards on request to people who live in the west midlands.

West Midlands Railway – require certain documentation before they will issue a priority seat card

Transport Assistance Cards – buses

A number of the bigger bus companies have produced Transport Assistance Cards, generally in the form of .pdf files that can be downloaded and printed, so you can cut out and add the relevant cards to your travel wallet so they can be shown to the bus driver. They are mostly repetitive, with the occasional card that’s specific to one operator. You could always go for a blank piece of paper/card with your own message.

Like the journey assistance cards made by the train operating companies these are probably most useful for people who have difficulties communicating in spoken English. These ones are also potentially useful where:

  • you want to use written communication to avoid drawing other passengers’ attention to your communication [eg. you might want the driver to know to wait till you’ve sat down before moving off, without disclosing your balance difficulties to everyone else on the bus]
  • you have to do a lot of communicating about your needs and it helps you to not have to do all of it verbally / to use a visual reinforcement.

Some of the cards I’ve found are:

Generic request form – for sending to your local bus company if you don’t have printing facilities.

The Confederation of Passenger Transport make two generic pages of cards, intended for bus companies to “personalise” – page one and page two

Arriva

First Group

Nottingham City Transport

Travel South Yorkshire provide printable cards in both colour and black and white.

 

COVID-19 – movement restrictions / “lockdown”

Guidance is not law. [except for some odd occasions where it is]

The Regulations (ie. the law) restricting people from leaving where they’re living is http://www.legislation.gov.uk/uksi/2020/350/contents/made – read Regulation 6

The guidance produced by the government does not reflect the law – it is much more restrictive. The Court will only enforce law, not guidance, so get some proper advice before paying any fixed penalty notice. [The regime of fixed penalty notices here seems like it could turn into a money making exercise/tax on the poor and others who fail to get advice that will allow them to defend any proposed prosecution.]

You can leave your home if you have a “reasonable excuse” and a non-exhaustive list of examples is given.

Without doing things that are currently a really bad idea because they increase the risk of spreading the virus ie. holding a party, BBQ or other event with lots of people attending and being closer to one another than 2 metres or going mountaineering or somewhere else you might get into difficulties of the sort requiring a mountain rescue team to help you out of, there is a lot of scope for being outside your home.

If you need/want to exercise outdoors more than once a day, whilst following the advice about social distancing, go for it. Same if you have a child who is used to be able to be outside and needs a lot of exercise.

If you want to deliver something to a family member or friend who doesn’t meet the current definition of “vulnerable” go for it.

If you’re sharing your home with others and it’s all got a bit tense, or worse, it’s OK to go out.

Public health is important, but so is the government being honest in its publications. There’s no good reason for the government to be issuing guidance that is so much more restrictive than the legislation without acknowledging that that’s what it’s doing.

Separate to the Regulations, thinking about the health implications at present, it’s worth being cautious around activities that pose a higher risk of injury, even if they’re ones you routinely do as a household or individually. Trampolining can cause broken arms/wrists. Various DIY jobs pose the risk of injury. The risks are of getting poorer treatment because the hospitals are overwhelmed with COVID-19 patients and of catching COVID-19 in or around the hospital.

 

COVID-19 – schools closing edition

All nurseries, schools and FE settings are closing to all children other than those who are cared for by at least one key worker and those who are “vulnerable”. There is quite a wide defintion of vulnerable for these purposes, giving a non-exhaustive list of:

  • supported by social care
  • safeguarding and welfare needs, including Child in Need Plans
  • those with Child Protection Plans
  • Looked After Children
  • Young Carers
  • disabled children
  • children with EHCPs
  • other children with “social” difficulties [which in this sense seems to be more of a reference to their family circumstances than to difficulties the child has interacting with their peers and staff at school]

Some of those definitions are overlapping: ie. a child with a Child Protection Plan, will have safeguarding and welfare needs and will be being supported by social care.

It is explicit that children do not have to be sent to school just because they meet the criteria of “vulnerable”; though for children where there is extensive social services involvement on a child protection basis, any decision to not send them to school should be discussed with the child’s social worker to avoid allegations being made that the child has been removed from school to conceal abuse.

Some children will also meet the criteria for vulnerability to COVID-19 due to eg. asthma, cerebal palsy, diabetes, learning disability. A smaller sub-group will meet the criteria for extra vulnerability to severe side effects eg. those receiving chemotherapy. For many of these children, particularly those in the latter group, it will be better for them to be somewhere other than school if at all possible.

The children with some of the most complex needs in residential special schools will probably need to stay where they are with their existing, familiar staff teams, so far as possible.

The issue as I see it is that the pandemic is going to be a marathon not a sprint and what can be put in place over the short term may not be sustainable for some months. There are considerable risks attached to keeping children out of school, where school is part of the “safety net” for the family. If you are living somewhere where it is difficult to safely take your child outside without getting too close to other people, there are likely to be considerable overall advantages of them going to school and being able to use the school playground. [You may for instance have a child with behavioural needs that mean you need more than one adult to manage them outside and there’s only one person available. you might live close to a main road, be unable drive and not have any open space within walking distance]

The patchiness of the provision and the way it is going to change to acommodate the changing numbers of children and the different staff involved may make it provision that is difficult for some autistic children to use. Conversley, I suspect some other children are going to shine in the different setting, with fewer pupils and staff and different activities.

My conclusion on this question is that it’s best to retain flexibility in your own thinking: you might conclude you don’t want to send your child to school (despite being able to due to being a key worker/them being vulnerable) and you’ll manage another way. You might equally conclude they need to go to school now and find yourself changing your mind in a couple of weeks time. The flexibility to send / not send children to school should be there over time, so any decision you make now isn’t one you’re going to be stuck with through the pandemic.

 

 

COVID-19

I’ve been thinking about posting this for a few days and wondering what I might have to say that’s different to the information that’s already available or expands on it in ways that are helpful for disabled people and parents of disabled children.

New normal

From what I’ve seen so far (and what is known about the general pattern of pandemics), COVID-19 is going to be around and a major difficulty [both personally and in terms of the overall capacity of the healthcare system] until a vaccine has been developed and administered to a reasonable number of people. That’s at least a year away and I reckon probably closer to two years.

What this means is that the advice about handwashing and ways to cough and sneeze that minimise the chances of passing on infections is here to stay. It needs to become routine for people for whom it isn’t already. It may mean some backwards steps for children who are toilet trained but not great at washing their hands effectively – they may need specific teaching and extra supervision until they can reliably wash all of the surfaces of their hands.

I suspect there’s going to be a lot of people in a few months time who develop skin problems as a result of washing their hands very frequently. If you already have problems with your skin, it’s probably worth getting advice from a pharmacist/nurse/GP/dematologist early about the best ways for you specifically to wash your hands. If you don’t, it’s almost certainly worth finding an emollient cream to use as often as you can after washing your hands.

These recommendations about handwashing are probably going to be difficult for some people to follow:

  • some people with pre-existing skin conditions
  • some people with sensory processing problems who find the physical sensations of handwashing really unpleasant, or if they’re OK with that, find say, the noise of handdryers in shared toilets intolerable
  • some people who have pre-existing anxiety around hygiene/health, who might have established rituals for handwashing or who might, in their anxiety, think the guidance doesn’t go far enough

There’s also going to be an increased overall burden on the NHS, which is almost certainly going to lead to increased waiting times for referrals as resources are diverted to deal with COVID-19. There isn’t a great deal anybody can do about this, though I think it’s probably wise not to delay seeking any referrals you think you need.

Isolation

I don’t think it’s scare mongering to suggest you have a look at the advice on self-isolation and to think about whether it’s something you could realistically achieve with your particular family/household circumstances. Many disabled children won’t be able to manage what is needed to minimise the infection risk. Even those that can are likely to find 14 days in limited numbers of rooms in their home very difficult unless they’re feeling unwell enough to sleep. In some cases, you may be better off declining to self-isolate and having the child admitted to hospital. This is particularly likely to be the case where a child needs a lot of care. Paid care staff may themselves become ill or need to self-isolate meaning you have less support than you would usually.

It is likely this will become less of a problem later on in the outbreak when there will be more advice around general social distancing rather than isolation of ill people.

You might think about toys, hobbies, books and so on that would be likely to be entertaining for your child in advance. For some children the lack of exercise will be really hard and you might be able to find suitably sized home gym equipment. If you have a private garden, you might consider new garden based toys and/or exercise equipment. If you’re into nature and think not being able to go outside will be a particular problem for you, you might consider what house plants you own and whether cultivating some more, maybe including some herbs or similar will help. This is perhaps especially important for people who live in flats without gardens.

School closures

I suspect these will happen, it’s just a matter of timing. I have seen no published information so far about plans for residential schools for disabled children. There are pretty good reasons for some of these schools to stay open, to carry on caring for their disabled children. If your child is at such a school, it’s worth having a discussion with the staff there about their plans and contingency plans.

The school might move the children’s bedrooms around, so that all of those who are ill are cared for together, away from the children who are well.

If you’re in a situation where you wouldn’t be able to care for your child at home without school, it’s probably worth contacting social services for an assessment of your child’s needs for social care and your own needs as a carer. If you already have a social care assessment setting out support you need during school holidays but not during term time, this is a good starting point for the sort of support you’re likely to need if the schools are closed during term time. Some of the support that’s often available during holidays is unlikely to be made available eg. group activities for disabled children, mainstream group activities, as they defeat the purpose of the school closures. So, you can stress to social care that you will need an equivalent replacement service.

If you don’t have existing social care suppot, you may find you need some now, as the demands of caring for your child in circumstances where school is closed and perhaps other care arrangements have broken down (eg. your childminder is ill).

You might find other parents are in a similar position to you and perhaps willing to accept a slightly higher risk of infection by meeting up with you and your child – depending on the children’s needs, you may find it a welcome break to have two adults caring for two disabled children rather than being on your own with your own child.

If your child is in receipt of NHS Continuing Care funding, it’s important to think through how they would be cared for if existing trained support workers/paid care staff/nursing staff become unavailable due to their own illness – discuss with the people responsible for the care plan and any agencies or other companies who supply staff.

If your own circumstances are very complicated and you’re in a position where you cannot safely care for your child at home, remember that there remains a mandatory duty on the LA to provide accommodation per s.20 of the Children Act 1989 where a parent is prevented from doing so. Social care services will be stretched and will try to discourage you from making them fulfil their duty, but it is an option. It’s also useful as a consequence for children’s services departments that don’t take requests for help to enable you to manage at home seriously.

If your child’s school is likely to close, it’s worth discussing with them how they are intending to set work for the children over the closure. For some children, ongoing school work they can probably complete much faster than in a class setting, will be broadly welcomed. For others, who maintain a strict dividing line between home and school, attempts to persuade them to do school work at home will be extremely frustrating for all involved. Schools do have to make reasonable adjustments to their policies to accommodate disabled children, so for younger children who won’t be persuadable into doing what they think is school work at home, it is worth trying to agree a range of activities that will extend their learning whilst not appearing to be school work. For older children, particularly teenagers preparing for GCSEs, the school should be working with you to explain the situation isn’t typical and that it is essential they carry on with school work.

Uncertainty

Whilst the general course of pandemics repeats over time (so is reasonably well known), there’s still a lot we don’t know about COVID-19, how the UK Government will respond, how governments internationally are responding, what the WHO advice will be and how other international events will interact with it. This means a lot of the planning that can be done has to be contingency planning of the “if x happens, we’ll do y”. This overall situation is likely to be inherently stressful for many people. Some decisions will have to be made without complete information. It’s worth thinking about activities for children to help them tolerate uncertainty better.

 

 

Bad faith

This seems like a seasonally appropriate time to write on this topic, when Christians are thinking about peace and goodwill to all.

One of the things I often come across are parents who have concluded that their LA is acting in bad faith, out of malice. This does happen, but nowhere near as often as people have decided it does, as they misinterpret actions as being malicious when they’re in reality done out of ignorance or for some other motive.

The reasons it’s important to consider what is really going on carefully are these:

1. SEN is (when you’re looking at an EHCP) a marathon, not a sprint. You don’t have to “get on” with your LA case officer, but you are going to have to work with and around your LA until your child is an adult (and in some cases on an ongoing basis as they transfer into adult social care provision). A victory achieved at great emotional cost to yourself is of no better value than one achieved at lesser cost.

2. Acting on anger can lead to taking actions that aren’t the right thing to do in the longer term. Anger is a feeling, that’s as real as any other feeling and one that often needs an outlet – sport, talking to someone and so on. Actions based on anger aren’t often the ones that serve children best in the longer term. Anger can become a hinderance to taking effective action, particularly when it results in intransigence.

3. Spending lots of time being angry over a long period of time isn’t usually very good for our bodies. It’s a marathon, with periods of extra effort, not a sprint.

4. Understanding the likely motivations of LAs helps in planning how to respond to them. You can still conclude they’re wrong to act on those motivations, whether morally, or in many cases, legally. Generally, nobody likes to think of themselves as being the “bad guy” so people put their own actions into the contexts that make them feel like they’re doing a good thing. For LA officers, this is usually the knowledge that their education budget is fixed and that they have to educate a particular number of children within that budget. “Protecting” the budget for other, maybe more needy, children is a factor that makes LAs less likely to agree to more expensive placements outside of the Tribunal. It’s easier if you’re an LA to say to your Council Tax payers “The Tribunal made us” rather than “we agreed it was necessary to spend £200000 on this child’s education”. The obvious knowledge that most parents of children with SEN are themselves Council Tax payers seems to be ignored. This is one of the reasons why arguments put to an LA that say “my choice of school and accompanying provision is cheaper than your proposals” are quite often successful – there’s a saving to the public purse.

5.Also remember most LA staff are dependent for their own security on having a job and an income each month. They are rarely well paid and may very well be people who fall into the category of “just about managing” in their personal lives. It’s very difficult for someone in that position to go very far outside what their employere has asked them to do, even when they are personally sympathetic to your case.

6. As Government spending was cut from 2010 onwards, lots of LAs took decisions that resulted in them losing their experienced SEN staff. Prior to that point, most LAs had senior case officers, who acted as representatives in many cases before the Tribunal, who had a reasonable understanding of the legal requirements. This meant they would be able to negotiate a case sensibly. With these people retiring and moving on elsewhere, many Children’s Services departments have ended up with inexperienced staff who are trained in their own internal policies to the exclusion of the legal requirements. This means that quite often LA officers are acting out of ignorance – this is not the fault of the individual, but of the LA corporately in not training its staff properly. This is something that can properly be made the subject of a complaint.

7. In cases where an LA is behaving maliciously, you stand a better chance of resisting them when you can react to them firmly, but reasonably and calmly.

Transition

We’re at start of a new academic year when lots of four year olds are settling into their Reception classes and lots of Year 7s are trying to get to grips with bigger schools, a timetable, more teachers, more homework and so on.

My experience tells me that the Year 6 to Year 7 transition can sometimes go spectacularly wrong within a few weeks where a child has been well supported at primary school but cannot cope with the demands of the secondary school with the support available to them. Sometimes, a child’s special educational needs have not been fully diagnosed and often it’s an Autism diagnosis that follows the child’s exclusion or removal from the school.

If you’re in this position, where you have a new Year 7 struggling with their new school, I suggest considering the following:

1. If they have an EHCP, seek an Emergency Annual review of their EHCP as soon as you can. If the problem is not identified and fixed quickly, the child can become too anxious about school for any subsequent ‘fix’ to stand a reasonable chance of working.

2. If you’re in the middle of an EHC Needs Assessment and you like the school they’re at and want them to stay there, if possible, engage with the school a lot over temporary solutions, pending the conclusion of the EHC Needs Assessment. This is an occasion when it may suit you to make less of an issue of the school behaving illegally (ie. imposing a part-time timetable) than you otherwise would.

3. If you’re in the middle of an EHC Needs Assessment and you’re convinced the school isn’t right for your child, operate in whatever way is least stressful for your child and compatible with your childcare arrangements. In your case, it is likely to assist you in obtaining an EHC Plan for your child if the school exclude them, so avoid taking action simply in order to avoid an exclusion.

4. If your child has known SEN that were thought to be milder than would require an EHC plan, now is the time to make the request for an EHC Needs Assessment, whilst talking to the school about how to help your child. Everybody’s original assessment of the severity of their SEN based on what they were like at primary school may well be mistaken, but it’s taken the move to secondary school to identify the problem. If you ask for an EHC Needs Assessment and it turns out you’ve “overreacted” to a teething blip, it’s not a problem – LAs routinely decline requests for EHC Needs Assessments and nothing will happen unless you appeal the LA’s refusal to assess.

5. If your child does not have known SEN and things appear to be going wrong with their move to secondary school, it’s worth:

    • Starting a diary – make a record of what’s happened each day for your own and/or your child’s use.
    • Consider who at the school knows what about your child; if your child is adopted, donor conceived, has been bereaved, is living in an “unusal” family set up and so on, there’s considerable risk to them of insensitively chosen or simply inappropriate tasks in lessons. Where a child is a Former Looked After Child (ie. you’ve adopted them, are their Special Guardian or have a Child Arrangements Order under which they’re living with you, after they’ve been a Looked After Child) they are eligible for the Pupil Premium. It is therefore in their interests that someone at their school knows about this in order to claim the funding. However, in a secondary school, communication is generally more fragmented than in a primary school – information known to the school as a whole may not in practice be known to each of the child’s subject teachers and is highly unlikely to be known to external supply teachers. Secondly, in the social milieu of school, your child’s preferences for who gets to know information about them are becoming much more important than when they were much younger. They may not want any teacher to know they were adopted or they may want their form tutor to know but no one else.
    • If there’s something else unusual in your family circumstances – say a parent has a long term health problem, a younger sibling has very significant SEN and they’re a Young Carer or perhaps one parent is in the military and liable to be deployed to dangerous areas, it is worth, in discussion with your child, considering whether to pass this information on to their school.
    • If something goes seriously wrong or there are a number of moderately serious incidents, request an EHC Needs Assessment. As in (4) above, if everything turns out to be teething difficulties, you don’t have to appeal against the LA’s refusal to start one. If what’s gone wrong is the beginning of identifying your child as having significant needs, you’ll be further along the process by having a right of appeal six weeks after your request.
    • Consider what is going on socially and helping your child make safe use of social media for staying in contact with friends.
    • Checking, so far as you can, that your child is drinking enough water, eating enough food and sleeping enough. School toilets are still [I left school in 1997] often not in a good state of repair/decor and can be a venue for bullying, which can lead to children not drinking enough to avoid using them. Lunchbreaks can be short at secondary schools. Consider a packed snack, even if your child is intending to eat a school dinner. Days at secondary school are usually longer and involve more walking than those at primary school, so are likely to be initially tiring.
    • Consider how to keep evenings and weekends less busy for a few weeks – this might be counter productive, because hobbies outside of school are generally good for self esteem and confidence, but is worth thinking about.
    • Contain homework to a reasonable amount of time each evening. Adequate sleep and at least some time to relax in the evening is more important than homework at this stage.
    • Providing direct help to organise their bag each evening for the following day – books for each subject, a pencil case, a calculator, packet of tissues and so on [yes, they should be learning to do this independently, but it’s somewhere you can help, in the short term, whilst they settle]
    • Making sure they know about anti-perspirant and the importance of washing .
    • Checking that their clothing, including their shoes, are comfortable and suitable for what they’re doing. Some children have sensory processing disorders and struggle with wearing any sort of school uniform because of the feel of the fabric. Anybody expected to walk any distance in shoes giving them blisters or that are very flimsy will have sore feet. Shirt collars can be unpleasantly stiff until they’ve been washed a couple of times. Talk to the school about issues that arise and discuss solutions – if a school is not willing to adjust its uniform requirements for a disabled pupil, you may well have an Equality Act claim for disability discrimination.
    • If school uniform and PE kit is particularly complicated, it’s worth getting them to practice changing quickly from one to the other.
    • Taking them for an eyetest, if they’ve not had one recently.
    • If they’ve previously had glue ear or other problems with their hearing, it’s worth seeking a referral back to audiology/the ENT department to check their hearing.
    • Also consider when they last saw a dentist and if relevant take them for a routine appointment.
    • If they menstruate and they appear tired, consider if they might be anaemic – this is one issue worth a GP appointment. If they experience painful periods, discuss with the GP what painkillers are recommended and how these should be administered at school.
    • If they might start menstruation, including for the first time, make sure they have clean underwear, tights (if relevant) and menstrual products with them. Find out where they can go to borrow a skirt/pair of trousers if in need, or get them to store a spare one in their locker, if they have one.
    • Consider a GP appointment if they appear particularly tired, after a few weeks or earlier if you suspect a potential (physical) health problem.
    • Also consider an early GP appointment if the ways that things aren’t going well for them look like a mental health problem – the earlier a referral is made to CAMHS the better.
    • Bear in mind that school may not be the problem – something might have happened outside of school and timing is coincidental.

Elections and voting

Another topical issue to consider.

Everybody in England over the age of 16 who is a British, Irish, or Commonwealth citizen or (currently) a citizen of another EU country should be registered to vote.

The issue of voting is one of a very limited number of areas that is excluded from the Mental Capacity Act’s provisions for making decisions for another adult. Even people who might arguably not have capacity to vote have a right to do so. This is perhaps particularly important for people who have lost capacity due to a brain injury or dementia who would be quite rightly angry at being prevented from doing something everybody else is allowed and encouraged to do. But it is also important in terms of engagement with wider society for learning disabled adults.

People with two addresses, which would include pupils attending a residential school are entitled to be registered at both addresses (though can only vote once in each election).

If you do want to vote in person and your polling station is too far away for you to easily get there, you may find your local political parties are willing to offer you a lift to the polling station on election day.

It is relatively easy to apply for a postal vote and for some disabled people, it will be easier to vote privately at home with time to consider the ballot paper. Although large print ballot papers are available at polling stations, which will help some people, the arrangements for visually impaired people to mark ballot papers are poor and rely on a tactile device placed over the ballot paper.

People who are detained under the Mental Health Act 1983 can vote by post/proxy (with the exception of those detained because they have been convicted of a crime). The same would be true for people who are deprived of their liberty in accordance with the Mental Capacity Act 2005 – whether authorised by way of the DOLS procedure or by a Court Ordere.

People who care for disabled friends and family might also prefer to vote by post rather than be committed to travelling to a polling station.

It is slightly more complicated to apply for a proxy vote, but it can be done. This is worth considering for anybody who prefers to vote in person but who has a fluctuating condition (so might be unable to go to the polling station on election day) or who has complicated travelling arrangements for work.

There are deadlines to apply for postal and proxy votes some weeks before elections are held, so it is worth sorting one of these out (or both – it is possible to vote by post as a proxy for someone else) at a time when there is no pressing election.

Where someone has an emergency after the deadline to apply for postal/proxy votes, it is possible to be granted an emergency proxy vote up to 5pm on polling day eg. if you’re in an accident and break a leg.

Internet Safety – School Uniforms

Not solely an SEN/disability issue, but a topical one.

It can be extremely easy to work out which school a child goes to from a photograph of them in school uniform. Sometimes there’s a logo that gives it away. Sometimes local knowledge of the schools in the area combined with a less clear picture is enough. Sometimes it takes a little more effort to complete the jigsaw, but it can be very easy.

Primary school pupils old enough to travel independently and secondary school pupils are more vulnerable to attempts at grooming than younger, more closely supervised, children.

Children who can be identified as attending special schools will be particularly vulnerable.

Best to keep your photographs of children in school uniform to those you know well enough to invite into your home / who you’d tell, if they asked you, which school your child was at. This may well be a subset of the people you interact with online.