“Data Protection”

This has been rattling around in my subconscious for a little while as a nice neat example of a post. I dug out the emails recently for someone as an example and given that I edited it down for them, I thought I’d share it with everyone. I think it’s a nice example of several things:

That freedom of information staff are often undertrained, and this lack of training manifests as a tendency to give out less information (because institutions generally don’t like to give out information); That, in freedom of information terms, it’s often insufficient to ask – you also have to know your rights, and be able to present evidence.

As a bit of context: In 2012 I was gathering data for the Domesday Dataset, which went on to reveal hosts of issues, including device obsolescence, postcode lotteries, and the rising dominance of the iPad.  I do think of it as my greatest academic work (at at some point in 2016 or so I should repeat the study to see what’s changed).

I’d asked Walsall Healthcare Trust for a list of devices they’d purchased between 2006 and 2012. I’d let you look at the resulting correspondence (the bits that have been edited out are things like overly long signatures and quoting previous emails).

0210/11: FoI Response Letter
8 messages
Freedom Of Information (RBK) Walsall Healthcare NHS Trust <foi@walsallhealthcare.nhs.uk> 11 January 2012 at 11:20
To: Me
Dear JosephThank you for your Freedom of Information request.  I am pleased to attach our response to your request.


Please do not hesitate to contact me should you have any queries.


Joseph Reddington <Me> 11 January 2012 at 12:06
To: “Freedom Of Information (RBK) Walsall Healthcare NHS Trust” <foi@walsallhealthcare.nhs.uk>
Thank you so much for your quick reply – very efficient :)Just a quick query – is it possible to be a bit more exact on the numbers? 1-5 is a bit vague when some of these devices are £10,000 a pop…


The other minor thing is that I meant to ask for the results broken down by year – apologies for not including this at first – would it be possible to do this? I’m happy to put in another FOI request if necessary…






Freedom Of Information (RBK) Walsall Healthcare NHS Trust <foi@walsallhealthcare.nhs.uk> 11 January 2012 at 15:48
To: Joseph Reddington <Me>
Dear JosephUnfortunately, due to Data Protection we are only allowed to specify between 1-5.  In terms of the data to be provided by year please would it be possible to put in as another FOI request.

Kindest Regards


Joseph Reddington <Me> 11 January 2012 at 16:11
To: “Freedom Of Information (RBK) Walsall Healthcare NHS Trust” <foi@walsallhealthcare.nhs.uk>
Could you tell me what aspect of Data Protection is involved here? In particular why it affects the data supplied by your trust and not the 56 other trusts who have so far responded with exact data to the same question (for reference I’ve listed their responses below)?(Also please consider this the formal request for breakdown by years – I’m entirely happy for the 20 day cycle to start from today for this additional request)

















Classicly done












































[Quoted text hidden]

Freedom Of Information (RBK) Walsall Healthcare NHS Trust <foi@walsallhealthcare.nhs.uk> 12 January 2012 at 11:01
To: Me
Dear JosephPlease find attached a list of the exact number of devices purchased as requested. 

Kindest Regards



CommuniKate: Vision

So, The CommuniKate Project is about one year old, and it’s been released about three months now, to much more of a pleasant reaction than we expected.  A few weeks ago Kate and I sat down in Tibbits with the back of an envelope and worked out where we want to go (AzuleJoe has its own goals, more on that in another post).
There are three things: universal formats; different ability versions and, as a pipe dream right now, access beyond hardware.
Screen Shot 2014-10-02 at 12.48.54
Universal formats
Universal formats is straightforward. If you can buy an AAC device, we want you to be able to use CommuniKate 20 on it. Ideally all the devices would work with something universal like the open board format, and we strongly support that. But it takes a while for manufactures to take those things on so we’ll be developing (and looking to help develop) CommuniKate ports to any AAC device you can name.  Giving the users more choice, more security, and easier device switching when they need it is our key goal right now.
Different Ability Versions
CommuniKate 20 is designed for users with complex needs.  Some users have difficulty with the number of items on the page.  In the next year or so you should see CommuniKate 15 released, along with a version of CommuiKate 20 that supports scanning.
Screen Shot 2014-12-10 at 12.00.18
Access beyond Hardware
Something that is always surprising to AAC professionals in the UK is that the UK is world leading on AAC. There are a wide range of factors: the national health service,  our relative wealth as a country, and even more mundane things like certain examples making the whole setup much more acceptable in the UK for many many years.   But the world is a big place and there are people with communication disabilities living all over the world in awful conditions.
We’ve posted about communication books before. We’re going to be investigating the possibility of working with some partners working overseas who might be interested in a copyright-free (translated) way of helping people communicate. For the price of one piece of hardware in London we could ship 500 CommuniKate communication books to somewhere that really needed them.

AzuleJoe: behind the scenes of the CommuniKate 20 demo

One of the parts of CommuniKate 20 that turned out to be very popular is the live demo (you can view a video of it in action here).

It’s time to talk a little bit about that live demo and how it works. This is one of those posts that’s only focused on the technical reader. It will have very little value to the non-coders among you I’m afraid.

The live demo software is called AzuleJoe, it’s entirely open-source and, like almost all the code presented on this site, it’s available to download from github.

When you view the live demo, what you are actually looking at is the CommuniKate 20 pageset running on the AzuleJoe software. The software that became AzuleJoe dates back to 2009 when I built a system for my little brother. When we started to prepare CommuniKate 20 for public release in 2014, the software was significantly overhauled into something that developed it’s own identity

The name ‘AzuleJoe’…

In case you are wondering, the name ‘AzuleJoe is pronounced A-fo-lec-oy, AzuleJoe is a Basque word meaning Tiles.  I Apologise for the ‘out there’ nature of the word but when you are trying to find a word that sounds like it might be something to do with an AAC device and also includes “Joe” as the last three letters (“CommuniKate” rather painted me into a corner) you are pretty happy with a short word that means Tiles.

Why is it separate?

Of course, we could have folded AzuleJoe in with CommuniKate and left it as a simple online demo. The reason we that we separated out the projects should be obvious to anyone browsing the repository: AzuleJoe can demonstrate any pageset, not just CommuniKate 20.   CommuniKate 20 is the first openly licensed pageset, we have no intention that it should be the only. 

If you’ve got a pageset that you would like to see running online easily, then the AzuleJoe code will help out, and indeed, Joe will probably help out if you ask.



Some of AzuleJoe’s design features might be a little unexpected on first viewing, but they are generally part of a reasoned view.  Let’s look at one in particular.

Full page images

You might expect that the images that AzuleJoe works on to look like this:

Screenshot 2015-02-13 12.10.12

Instead they look like this:


There are sensible reasons for this. First of all it was useful for the development of the pageset. Kate put CommuniKate together as a PowerPoint file. I then exported that into images and put those images directly into the software. Each image has an accompanying JavaScript file that tells the software what do do when each zone on the screen is pressed. Currently I generate these JavaScript files by hand, but the next version of AzuleJoe should be able to generate them automatically from the PowerPoint files.

Here’s the JavaScript file that goes with the image above.

function breakfast(){
    utterances[0][0]="yes ";
    utterances[1][0]=" ";
    utterances[2][0]=" ";

    utterances[4][1]="bran flakes";


    utterances[0][3]="boiled egg";
    utterances[1][3]="fried egg";
    utterances[2][3]="scrambled egg";
    utterances[4][3]="full English";





You can see how simple this is to build, one image for every page and one very simple file to go with each one.


Why is this useful?

We think that pageset design should be as simple as possible for users. If it’s PowerPoint it can be a communication book as quickly as it can be a working AAC demo. We want to be able to say to people “Here is a PowerPoint Template, now you can build a pageset concentrating on the language rather than the buggy interface some programmer threw together. When you are finished. We’ll expand it out for you.”


I like open source things, how can I get involved?

We love the idea of people helping out with the code. Because AzuleJoe is currently such a simple project, it’s there are a lot of easy things that people can do to help. So if you’d like to fork the repo to, for example:

  • provide scanning
  • use native TTS on android (or any other format)
  • retarget AzuleJoe to a different pageset
  • import from (hard) or export to (medium) the openboardformat
  • precompute utterances

Then we’d love to see what you can do. I’d also love to hear from people who are used to working with the Microsoft Office file formats.









Half a million siblings under 16

My little brother, via Skype

My little brother, via Skype

I post occasionally on Sibling Issues, partly because, as we’ve noted before, there are relatively few other people doing itA few of the guest writers on this blog are siblings themselves and we’ve talked a few times about them being a ‘hidden’ population.

In October, I set out to find out how big this hidden population was. When you can put numbers around something, you can start to understand it a little more. It can inform research direction within academia, and funding decisions outside it. It can focus minds and help people make tough decisions.

Traditional research, of course,  would be to send out some surveys and try and extrapolate from results. I’ve used this style before on papers, but it’s frustrating when you know the data is already there. It’s particularly annoying when you know that much more accurate data already exists.

In this case, almost all parents of children in the UK are in receipt of Child Benefit.  Also almost all parents of children with disabilities in the UK are in receipt of Disability Living Allowance (DLA).

If you had two lists, one containing all the households that contained all the households that received Disability Living Allowance for someone under 16, and one containing the amount of Child Benefit claimed by each household, then we could count up the number of siblings. You’d only count the cases where both the ‘glass‘ and the DLA sibling were under 16, but you’d get better data than ever before.


What’s great is that we can do this.

If you worked for the Department of Work and Pensions (DWP), and had these datasets handy, then it would take you about 15 minutes to interrogate the system to get the numbers out.

In October last year, I made a Freedom of Information Request asking for

“the number of people receiving Disability Living Allowance on behalf of an under-16 year
old. I would like this information broken down by the overall amount of Child Benefit claimed by the person.”

This is the sort of the thing that the Freedom of Information Act is particularly useful for. There is no political point scoring happening here. The DWP know that this isn’t information that people are going to shout at them over, this is information that the government can release to the public to help make the world better.

This Friday, they came back to me;  Here are the figures.


Number of Children per Household Frequency Total Number of Siblings
1 101,100 0
2 144,590 144,590
3 81,270 162,540
4 34,310 102,930
5 12,120 48,480
6 4,200 21,000
7 1,520 9,120
8 540 3,780
9 210 1,680
10 80 720
11 30 300
12 10 110
Total 495,250


That’s 495,250 in total. As a minimum number of the siblings (under 16) of children (also under 16) with disabilities. I haven’t worked out how to extrapolate this to the siblings under 18, or adults. But I think that’s a very, very big number considering the tiny amount of attention paid to it.


Note – lots of caveats can be put in here, but I wanted to put these numbers out. This is clearly only one datapoint, but the DWP figures are as solid as one can imagine. For those interested, you can compare with the Office for National Statistics numbers here (there will be a couple of follow up (and very nerdy)) posts on the statistical differences.



Keeping us going

Very short post today, but an important one. One of my long-term correspondents in AAC sent me a video of her son trialling a new communication aid. He was ordering his own dinner for the first time in his life. I asked and he agreed to share the video more widely.

It’s things like this that keep me going.

The 30 most ‘liked’ disability pages on Facebook – 2015

Last year I wrote a post on the top 20 disability pages on Facebook – it’s a year old and so it clearly in need of a bit of an update. This is that update.

The method goes like this – I asked Google to give me all Facebook groups with the word ‘disability’ in the title or description, build up a library of those URLs and retrieved the ‘likes’ ‘talked about’ and ‘description’ information from the page. As always, I’d be interested in knowing if I’ve missed anything.

Rank Like’s Name
1 95,569 Social Security Disability Income
2 45,409 Disability Scoop
3 40,960 Disability
4 36,493 Scope
5 25,143 Disability.gov
6 13,980 Black Triangle Anti-Defamation Campaign in Defence of Disability Rights
7 10,287 Leonard Cheshire Disability
8 8,780 Link
9 8,588 Disability rights movement
10 7,047 This Is What Disability Looks Like
11 6,981 Disability Support Group
12 6,085 Disability Rights UK
13 4,630 DisabilityNews
14 4,460 National Organization on Disability
15 4,044 Hidden Disability
16 3,312 Disability Grants 
17 3,081 International Disability Alliance
18 2,924 Disability – ADA “let’s talk”
19 2,833 Disability Pride Day NYC
20 2,799 National Disability Institute
21 2,687 Disability Rights California
22 2,637 Disability Bitch
23 2,348 Disability Rights Legal Center
24 2,168 Disability Today
25 2,151 “Focusing on Ability not “disability””
26 2,091 Disability Rights Fund
27 2,038 Disability Rocks
28 1,999 Disability Dating UK
29 1,922 Disability Rights International-Mexico
30 1,840 Disability News Service

Using AzuleJoe and CommuniKate 20 online

So in November we launched CommuniKate 20.  We were, and are, pretty proud of it.

Screen Shot 2014-10-02 at 12.48.54

In the last two months, something a little strange has happened, it’s been very popular, and interestingly we’re seeing more and more traffic to the demo page that you can see here.  We’d intended that the demo page be used by SLTs  to have a look at the pageset before installing it on a device.  However, it turns out that there are  people using it as a first-order communication device:  they are  loading up the very basic CommuniKate demo without any customisation and using it to speak.

Obviously this is a surprise, and a pleasant one – it’s caught be slightly wrong footed thought and too a certain extent I’m scrambling to keep up.  This last week I put together a ‘how to use the demo’ video:

It’s a very short video – I wanted to show off the functionality without the people watching needing to be literate, and to work with short attention spans. It helps that the software is pretty low in functionality just yet…

5 arguments that break as soon as Disability is involved. (Friday Requiem)

Quick note for readers.  I think it’s important that I consider my back catalogue of posts to be part of the site and that they get maintained, looked after and followed up on.  So each Friday I’ll be picking a post I did from that week last year, and see if my opinions have changed, or find out how the story develops.

This is an update of this post, written last year. 

One of the things I find fascinating about disability is that it breaks your argument.

It doesn’t matter what your argument is, disability will break it.

You have yourself a nice simple world view like, for example:

I believe that organ donation should be opt-out, not opt-in.

(which I happen to broadly agree with) and suddenly you have to contend with a range of cognitive issues, which make a simple issue complex. Obviously, that’s very hard for you.
You may also have the view: I believe “fat pride” is absolutely disgusting, offensive to everyone at a healthy weight, and deserves to be shamed at will.(which I happen to broadly disagree with) which runs into a problems as soon as you consider a wide range of health issues.

Or you might have a nice clear ethical principle about suicide and you find that various of the disability-related aspects around right-to-die might make your position really quite uncomfortable. Until recently I was  slowly developing a career around exactly these complexities with privacy control and disability.

Abortion is always a can of worms regardless of the consequences, but both pro-choice and pro-life positions (as they are generally presented) have nasty consequences for various disability issues.

The point is that because people are different, solutions for many people can’t be simple. Never has this been more apparent than this story from just before Christmas:

Many disabled citizens have difficulty wielding traditional pistols and rifles, which has prompted some to become vociferous allies in the campaign to block new restrictions on assault-style weapons.

“They’re banning these weapons for arbitrary reasons — because it has a certain grip or stock — when in reality those are the features that someone with a disability like me needs to operate a firearm,” said Scott Ennis, a hemophiliac who started the Connecticut-based disabled firearm-owners group and serves as its president. Like Foti, Ennis suffered joint damage that makes it difficult for him to grip and shoot.


Ennis and others insist that all citizens have the right to bear arms, and disabled citizens often have an even greater need for weapons for self-defense.

Yes, someone has raised the (sensible) issue that if you are banning guns based on the type of grip they have (which is pretty strange gun-control from a British point of view anyway, and even stranger for anyone from a technical point of view… we can make grips), then you are disproportionately causing problems for people with disabilities. For those of you keeping score, the court case in question was reduced to an individual plaintiff in February, and hasn’t made the news since.

(page image from http://commons.wikimedia.org/wiki/File:Disabled_parking_place.jpg)

The target for assistive technology shouldn’t be ‘everyday man’ it should be Iron Man

Screen Shot 2014-12-14 at 15.23.42
[Pat Starace’s] Iron Man inspired 3D printed hand and forearm are a perfect example of such personality and expert engineering… with an added dash of hacker flair.

The target for assistive technology shouldn’t be ‘everyday man’ it should be Iron Man

The examples in this post are largely (but NOT completely) tongue in cheek.  I would, however, like to be clear that there is a serious point to be made here.

I see a lot of assistive technology of the form  “Now this person in a wheelchair can get in and out of bed without problems”.  Many of them I really like such as: “Now this person can eat cornflakes”.

It regularly strikes me that this is something of a false target. I can hand on heart tell you that, in all my life, I have never wanted to be ordinary. I have *been* ordinary regularly. Many, many, many times I’ve failed to reach the standard of ‘average’, but it’s never been the target.

I mildly object to the idea that an assistive technologist goes up to a person with a disability and says “my dream is to make you ordinary”.

There are two problems. Taking my brother Richard as an example. To make him ‘ordinary’ (and I tense up to write this), we’d have to push the state of the art so far as to be unbelievable.  He would need an entirely new set of custom equipment, training, and practices every single time we tried something new, or experimented – it’s never going to happen. Aiming for ordinary is going to miss because there is quite so much not-ordinary.

The other thing is that it’s a very odd place to stop. Why not even the odds? Two of my grandparents used wheelchairs as they aged. Quite often people would ignore them and talk to the person pushing the wheelchair. I understand this is a pretty common problem.

Terribly, my instinctive solution to the issue is to weaponise…
If electric wheelchairs came with Taser weapons (presumably charged from the main battery), then I suspect that
  1. people using them would feel safer and
  2. people would be much more inclined to get the hell out of the way.  

AAC devices that included Airhorns would certainly solve the problem of AAC-users being ignored (it turns out I underestimated the internet on this one…). I’ve talked before about being in favour of blind people having guns. Crutches with pepper spray would change the incentives for bullies on the street.

I like to think that the point of assitive technology was to level the playing field. You will never level the playing field by just picking the six everyday activities and making them ‘normal’ (although we should definitely still be doing this, it’s important) you level the playing field by pushing beyond.

Best illustrated, of course, by the classic:


I’m reminded of what I wrote when Disneyland altered its special needs access

Disney World is one of my little brother’s favourite things. Particularly the rides. And I can accept that it’s not particularly fair on non-disabled people if someone is always jumping the queue, I’ve felt fairly embarrassed accompanying my brother. But my view has always been this: if you tot up all the unfairness in the world that’s faced by the people jumping the queue, against the people standing in it, then I’ve always felt that Disney was doing its bit to settle the score. And that a day in Disney World really was some of the happiest, and most ‘normal’ time we spent as a family.

Assistive technology shouldn’t be aiming for this (although it should be proud of every gain it makes):

Image from: http://chasevariant.blogspot.co.uk/2012/07/marvel-universe-375-series-4-professor.html

Image from: http://chasevariant.blogspot.co.uk/2012/07/marvel-universe-375-series-4-professor.html


It should be aiming for this:

EDIT – I should note that I’ve moved, to a certain extent away from working to build flashy new things myself, but I’d still like to see the people in area having a bit more of an ambition.  And this movement is largely because my interests centre on intellectual disability. If Richard was an amputee you can bet your bottom dollar I’d be building a Jaeger in the back yard.

Two amazing disability artists at the Shape Open exhibition.

A little while ago I had the good fortunate to be at the Shape Open exhibition.  The Shape Open is is an annual call-out for both disabled and non-disabled artists to submit work of any medium in response to a disability-focused theme.  Art isn’t something I’ve talked about on the blog before but as I’ve started to dabble in art events I thought it was time to start being a bit more inclusive.

I’ll leave the review of the event itself to those more qualified, but I did invite a couple of the artists to talk about the work they put up. Obviously it’s better seen in person but I thought this might be a fun diversion from my normally-technical approach.

Carly Jane

First up is Carly Jane, a disabled artist who presented the work ‘Strangers’, which is one of those works that really does appeal on several levels.


I’ll let Carly talk about it in her own words:

The response of the limbic system within the brain when in a state of either fear or excitement is identical. This is where an individual makes a choice, and probably why I can’t stand roller-coasters. My work often sits somewhere in the middle of that choice. I am interested in exploring the boundaries of inhibition. I also often use humour as a route into the work, behind this however I intend to confront social categorisation and behaviour led by conditioned minds. We are all conditioned, myself included. Hopefully this will lead an audience to question the root of their own belief system, and in the making I am constantly questioning my own.


You can find out more about Carly’s work at  www.carlyjayne.co.uk



Wouter van de Koot

Wouter’s watercolour piece ‘The Good Life 5’ was a real highlight of the exhibition.

Screen Shot 2014-12-08 at 11.05.56


In Wouter’s words:

In my work I often aim to confront myself with my personal  fears and fantasies. I do this in improvised performances in which I reenact specific scenes. The Good life 5 deals with the fear to become (temporary) disabled. Physical  health is something I often take for granted and the thought of losing it fills me with unease.  One of the questions I ask myself is: how do you keep your personality intact if you become dependent on others for your daily functions.

Much more about Wouter at: http://www.woutervandekoot.com/






How mapping software screws wheelchair users…(Friday Requiem)

 Quick note for readers.  I think it’s important that I consider my back catalogue of posts to be part of the site and that they get maintained, looked after and followed up on.  So each Friday I’ll be picking a post I did from that week last year, and see if my opinions have changed, or find out how the story develops.

Last year, in this post, I wrote this:

Public transport in London is not good enough for people with mobility problems, and it’s pretty hard to even explain to people that mobility problems isn’t the same as people in sport wheelchairs.  The London Underground is a particular offender (mostly for historical reasons of construction it must be said), and the nasty truth is that for a lot of people with mobility problems the LU is a no-go area. Personally I find the idea of ‘just use the bus’ pretty horrible in any case and I’d like to see *actual* accessible transport, but while waiting for accessible transport, I’d like the second-order services like mapping software and so on to take account of the fact that not everyone is one of the gouging and biting mobs fighting to get on the central line at quarter to six in the evening…. Sigh.

By odd coincidence,  this story is currently doing the rounds.

Doug Paulley, 36, was denied access to a First bus to Leeds when a woman with a pushchair refused to move because her baby was sleeping

The most recent judge to look at the case has overturned the ruling, on the interesting basis of ‘this is a job for parliament’. I like to think that the choice between ‘forcing a wheelchair user of a bus’ compared to ‘risking waking a baby’ is one for common decency.

Children do what parents do…

As you all know, one of my big interests is in open access to research and in making that research accessible to people that are outside of academia. I was very much taken by the paper “Imitation (rather than core language) predicts pragmatic development in young children with ASD: a preliminary longitudinal study using CDI parental reports”  and I asked Carmela Miniscalco,  the lead author, if she was willing to write a short introduction for my readers. She very kindly complied and I think it’s very much worth listening to what she has to say.


Children do what parents do…

and not what they tell them to do. It turns out that the old saying holds true in our study of pragmatic language development.

Parents often worry about their child’s language development and delayed language is the most common cause for parents to seek help from professionals. Many children with autism spectrum disorder (ASD) are identified due to absent or delayed language, or loss of meaningful words during their second or third year of life. Core language skills such as vocabulary and syntax may range from nonverbal to above average levels in children with ASD. In contrast, intentional and functional use of pragmatic language skills) appears invariably poor.

The key idea of our article was to use parents’ ratings of their child’s language abilities. We used the MacArthur Communicative developmental Inventories (CDIs) from two time points. The CDI comes in two versions and covers areas such as early words, actions and gestures, expressive language and also include a pragmatic scale.

The result showed that basically all rated areas were associated concurrently and by combining the two versions of the CDI we could examine longitudinal predictors of pragmatic growth. The regression analyses showed that imitation, specifically Imitating adult actions longitudinally predicted pragmatic growth. This imitation  includes items such a child’s attempt to put a key in a lock, pound with a hammer and pretending to “read”, activities building on imitation and pretend play.

At the moment we can formulate two possible explanations of this finding; (1) Imitation increases a child’s general social engagement and motivation and/or (2) Imitation may reflect a child’s tendency or willingness to learn the manner in which actions are normative performed. These two are not necessarily mutually exclusive, but more research in this area is needed.

In the meantime, our study suggests that it might be important to support and scaffold imitation of adults actions in young children with ASD.

You can read the full thing as a pdf here.

Camphill and Private Eye

As the blog has become more popular I find I’ve started to get emails from people who would like to use it as a platform – a lot of the time these are just press releases churned into a bit mailing list but there are also a few academics, people with stories to tell, and just recently the occasional haunting tale.

One of my readers emailed me about a disability related story appeared in Private Eye recently. The story itself was a fairly damning indictment of the Camphill Village Trust (CVT), a charity that runs residential communities for disabled people all over the UK.

I wanted to look into this in a little more detail and today I’m going to give you the first part of the information I have. I contacted CVT for their side of the story and got it.  Normally I would link to the original article at this point, but because it’s print only I’m having to run a screenshot, sorry everyone.

Private Eye’s Article


The CVT response (with Joe’s occasional remarks)

Statement from Huw John, Chief Executive of Camphill Village Trust:


Why the change?

Employment status is not a matter of choice for CVT, it is to ensure the charity is compliant with the law.

CVT sought new legal and tax advice on the employment status of co-workers following repeated formal concerns from our auditors that a historic tax agreement with HMRC was out of date, coupled with Charity Commission concerns about co-worker remuneration. Following expert legal opinion, it was clear that the current co-worker model needed to change.

Whilst we are now required to have employment contracts with our co-workers, our commitment to the care and support we offer to our beneficiaries will remain unaffected; none of our communities – including Botton – are under any threat of closure and we are actively investing in their futures with a range of exciting new projects. Our ethos will remain strong. The people we support are – and always must be – at the heart of every decision we take.

We understand some of the concerns that have been raised in relation to this decision, but the changes do not mean the end of CVT, or our unique communities. Botton has always been a very special place and we confident it will continue to be so.”

The problem with this sort of thing is that it mildly conflates several issues.  While researching this post I took the opportunity to speak to family members of Camphill residents (not ones provided by campaigners I should say, I have my own contacts and I don’t think that I’ve forgotten how to do research) and a couple of people who knew how the systems worked.  It’s clear that there the model definitely has to change.  The Camphill model isn’t really one that sits well in the atmosphere of the 90s let alone 2014 – and that’s just at the level of things like paperwork; risk assessments; and safeguarding.  Not to mention big problems in funding following the last few years of change.

However that’s only one of the issues.  Let’s be clear, the two things are:

  1. That change is happening
  2. That you are being an arse about how change is happening.  (The words were ‘bullying and dirty tricks’)

The campaigners are furious about both,  many observers accept (1), depending on how much the trust the process and think that (2) is the thing that stops them trusting one.  The text above is just saying that (1) needs to happen.  Sigh.


Shared Living

With the changes being made by CVT, shared living will still be available for those individuals and communities it is appropriate for.

For those that shared living is appropriate for, there will be self-contained accommodation for co-workers within the household, enabling there to be greater clarity on working hours for each employee as instructed by the Charity Commissions requirements.”

I’d like some numbers on this. CVT will have an estimate somewhere and it would be helpful if they had written “For those that shared living is appropriate for (we estimate 40% of the current residents), there will be“.  That’s largely me being picky though…


Safeguarding policies have not been ‘misused’ by CVT in any way. We report matters that may be safeguarding to local authorities in accordance with the local multi-agency safeguarding policy.

We may suspend a member of staff in that context and for co-workers that may involve asking them to move to alternative accommodation for a period to protect both the co-worker from further complaints and to protect those adults with learning disabilities living in the same household.

Once the local authority has given us permission to proceed we investigate and, if appropriate, follow our disciplinary procedures. 

We are unable to discuss any situation relating to an individual, save to confirm Mr Barber was suspended following a complaint that was raised with the local authority as a safeguarding alert and the charity will now be investigating.  The nature of the complaint is such that there is no reason to be concerned about his teaching or parenting activities.

As a separate matter, the charity is having to recognise that co-workers need to become employed.  We can confirm Mr Barber works as a class teacher for a separate charity. CVT cannot offer him employment to work elsewhere and attempts to reach an amicable solution with him about a future role and accommodation in the charity have to date been unsuccessful and he has been given two months’ notice to leave.

Other co-workers have not been asked to leave.  If co-workers decide they do not want an employed role, or to work under a more conventional volunteer arrangement with a more subsistence level of benefit, then charity ultimately will not be able to continue to provide them with indefinite free accommodation and financial support. To do so would be an irresponsible use of charitable funds. 

It remains our hope that co-workers will choose to engage with the necessary change process and any issues of concern can be worked through with each co-worker family, ultimately resulting in them staying in Botton.”


Or “we cannot discuss this case except to put our case across.”   The problem that CVT has that if you are going to do a response, you really do need to refute the *nasty* accusations against you, not just the easy ones.  So, I for one, want to know what happened with the £65,000 costs claimed (to be fair, the counter figure of £15,000 sounds low to me as well – I invite either side to show me the paperwork. Numbers are pretty easy things to look at.


No-one has been told they will be ‘evicted’ from Botton if they do not accept new contracts and no-one has faced a ‘fast-track’ eviction. We have made it clear since the start of this process that continuing as co-workers is no longer an option at CVT. If co-workers decide that they do not want an employed role, or to work under a more conventional volunteer arrangement, the charity cannot continue to provide them with indefinite free accommodation and financial support. To do so would be an irresponsible use of charitable funds.

It remains our hope that co-workers will choose to engage with the necessary change process and any issues of concern can be worked through with each co-worker family, ultimately resulting in them staying in Botton.

This sort of thing really annoys me because it’s just playing with words.  “We didn’t tell anyone that they word be evicted using that word, we just told them that they wouldn’t be able to live there.”   in a similar vein to “I didn’t kill him, I just stabbed him until his heart stopped beating”.


Release of Documents

CVT sent me these documents, which was very nice of them. They are the letters they received from HMRC about TAX and business practices.

HMRC Letter 1

HRMC Letter 2

I like this – I like that the are refuting Private Eye’s suggestion by just releasing documents in a transparent way. And those documents are a fairly solid endorsement of the need for change. But the problem is that it’s not that many of us watching think that change is bad. It’s that if you keep screwing it up we’ll presume that you are probably going in the wrong direction.


(This got cut from the top of the blog, but I think it’s worth putting in as a general apology for the fact that this post is pretty unreadable for people using screen readers.)

Unfortunately I couldn’t think of a better way of doing it without breaking copyright in a fairly serious way… Because Private Eye lacks an online edition it’s quite difficult to feed their text into a screenreader for example or convert it to audio.

Or so I thought…

It turns out that the guys at the RNiB offer a service that provides Private Eye as one of their talking newspapers. How very excellent, I’m pretty impressed.

Friday Requiem: I shouldn’t tell you this but…

Quick note for readers.  I think it’s important that I consider my back catalogue of posts to be part of the site and that they get maintained, looked after and followed up on.  So each Friday I’ll be picking a post I did from that week last year, and see if my opinions have changed, or find out how the story develops.

So last year I wrote this:

One of the most useful habits I’ve got into in the last few years is this.

When someone starts a sentence with “I shouldn’t tell you this, but-”, I stop them.

That’s pretty much the whole of it, but it’s such a useful little thing, I suddenly found I had fewer inconvenient secrets clattering around in my brain.

It turns out, when I look back over the times that people shouldn’t have told me X, that X has pretty much never been useful to me. It’s never made me happier, healthier, or richer. All it’s done, is that it’s meant that there is a least one person in the world who when I meet, I have to remember a fact, and then remember that I’m not to mention the fact and after going though that process I can then actually start thinking thoughts that are, you know, useful.  Really when someone is saying ‘I shouldn’t tell you this, but -” they are saying ‘I’m going to make life harder for you, while at the same time showing that I am fully aware that I am a poor friend’.

So yes, if I had to pick one habit that’s made my life better over the last few years it’s that one. If you want information, go to Wikipedia.

EDIT – two edits I need to make here, first of which is to clarify – this only happens about three times a year (I looks kind of ‘high school’ on first reading) and secondly it was pointed out to me that I only do this for social or personal matters – I’m all ears for industry gossip – I’ll have to change that…

I written it as a general – hey-this-is-a-kind-of-useful-thing-and-I-think-if-more-people-did-it-then-the-world-would-be-better-post, but, by a strange co-incidence, this week, I’ve actually be advocating for it as a phrase.

Let me give you a bit of background.  I’m currently preparing a funding proposal, similar to this one, about developing a privacy focused iconography for AAC users. We’ve been throwing some general ideas around about the starting points we might want to seed discussion with.  And to do that we were brainstorming phrases that might denote a particular cultural aspect of privacy…. Our list included

  • “Secret”
  • “I shouldn’t tell you this
  • “hide this”
  • “you didn’t get it from me”
  • “for your eyes only”
  • “Don’t tell X”

“I shouldn’t tell you this” has a distinct meaning in a terms of privacy and information exhanche and while I still think it’s something that sensible people should avoid, I do think that it’s something that people have a right to be able to express.  I’m actually interested in what people thing the building blocks are of privacy – are there phrases that you think encompass a particular cultural term?