News

CIES first impressions: good people, bad stats?

This week I’m at CIES in Vancouver. I thought I’d share my first thoughts.

It’s a conference for people to share research.  The first thing I would say is that the people are better than the research. I see sample sizes that are very small – but when the sample is collected from people running away from home because of war, I’m happy to let that slide.  Control groups are ‘control’ in that they are getting ‘part’ of the intervention. But when the group is spread out over a country because they are following their herds, I get that you have to make some changes.

This is a set of people who care about making a change rather than really testing an idea,  and some of the talks are clearly by people who are yet to really buy into the scientific method. There has been at least one talk where the control group clearly outperformed the target group, and this wasn’t mentioned at all in the talk.  There is a certain amount of ‘I need to have a results slide, here is the results slide, now moving on…’

An commercial  exhibitor told me that the the software they sold to nonprofits was great because ‘You don’t need to know any statistics, you can just put your numbers in and get the results’.  I think I literally staggered.

For all that, There are some amazing people here.  I’ve learned about the lives of the people deported from the states, I’ve spoken to people who are working out how to deliver education in the world’s biggest refugee camp.  I met people who are looking at the issues faced when children learn English as an additional language, but who have no written form for the home language.  I was astonished to learn about how self help housing works in Nicaragua.

The people at CIES are at the other end of the scale to the people who go to Mozfest. At Mozfest I can walk up to a stranger and ask “What’s the cool thing you are doing?” and they’d know. They’d also tell you which github repo to get the information from and happily take you down to the full atomic level of explanation.  At CIES the level of thinking is vastly more strategic and almost entirely technology agnostic (bordering on Luddite in places).   The average CIES person I’ve met is interested in projects that are running in a few hundred schools and that are completely nontechnical.  But the passion is the same. Everyone here wants to change the world.

 

 

CAPR style update!

About 18months ago we featured Claudia Romero, who had just launched a clothing range for people with disabilities.  She’s back to tell us how the story has been developing. 🙂

You can read the first part of the story here.

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Claudia Romero and family

It’s been almost two years since I told the beginning of my story creating CAPR-Style and we’ve come a long way since then. We have now created a full range of adaptive clothing for both adults and children. These are all adapted to make dressing easier, to combat a problem such as smearing or ripping of clothing, or for example to fit a wheelchair user better than a traditional garment.

This would all have been impossible without an incredibly supportive family and a strong CAPR-Style team. As we run the company from my family home, the two often blur but they combine well. It’s been great to watch my two older sons show such interest in the day-to-day running of a business.

One of the biggest things we’ve had to overcome is getting our brand out there and aiming to change people’s mind-set about disability. People often find it hard to admit they struggle and need help when dressing someone. We try to keep an active profile on social media and to attend as many events as possible where we can show off our garment offering. This is also a great way to meet people and get new ideas on what people need from their clothing!

The main thing we have to keep clear is that everyone is different. This is why hand-making each garment to order works really well for CAPR-Style. Each customer often needs a slight adaption on our base designs, added elasticated hems on the legs of a body vest perhaps or an opening on the left shoulder not the right. We offer as many options as we can, and a large part of our orders are bespoke to tailor for specific needs.

Our different body vests are certainly our best-sellers, however, I’m really proud of our range of jackets – the Kinlock Jacket is a go-to item for my own son Christian when we’re going out and about Edinburgh. They all open on the front and the back, so the wearer can be easily dressed from either side. They also have adjustable cuffs to keep out the cold and ensure they don’t get caught on things. The Ayr is designed specifically for wheelchair users – with a lengthened front. The Dunbar is a more traditional looking denim jacket from slightly warmer weather.

One of our biggest achievements since beginning CAPR-Style was being named Scotland’s Most Innovative Small Business in the Great Faces of Britain Competition. In 2015 we were also shortlisted for awards from Creative Edinburgh, Mumpreneur and the Great British Entrepreneur Awards. These things are a reminder that we are doing a positive thing successfully. However, what really supports me through a hard day is a simple e-mail from a customer saying our garments have made a difference. This really pushes me to continue, to expand CAPR-Style, and to work with each individual customer to create something that really works for them!

 

10000 missing children

This week eQuality Time applied for funding for a new project. We thought this would be  a good time to put some of the information here.

We’re going to talk about the problem, what we’d like to do about it, and the nature of the outputs.

Regular readers will note a significant change in tone and approach.   The changes in tone is partly due to the circumstances (previously we’ve written the posts before the grant, rather than the other way around).  It’s also got a lot to do with the nature of the project – previous projects were technology-lead, we can put something in front of the public or a funder and say “There it is, look how it solves your problem”,  this project is information-lead so we have to take a much more classic development approach with a full problem analysis and Theory of Change.

We remain in the very early stages of the project – we’d love feedback or questions. There’s bound to be places were clarification is needed and we’d be grateful if people would point us in the right direction.

 

The problem

At any given moment  there are 10000 children in the UK that are missing out on education (Pupils missing out on education – Ofsted report 2013 (http://goo.gl/NCWo5l)). This might be because of exclusion, special needs, or a range of other factors.  A significant proportion of this 10000 live in London.

Education is a vital part of society – children with poor education prospects are more likely to be involved in crime, drugs, and gangs, and less likely to find full time employment later in life.  By allowing this situation to perpetuate we are preparing for a legacy of poor outcomes and disappointment.

A major barrier in providing education for these ‘missing’ children is that almost nothing else is known about them – their backgrounds, situations or educational needs. Without this information, all attempts to tackle the problem are doomed to failure.    This includes a lack of broad quantitative information (are we dealing mostly with exclusion, or with special educational needs? What are the areas of London with the largest concentrations of ‘missing’ children) and qualitative research (how do children end up leaving education? What are the cracks in the system that cases fall through? Are there representative stories that help us understand the situation?).

We seek to address this missing information and use it to make a difference at both the grassroots and public policy levels by the collection of data and the provision of support.

Our Activities

We propose two major activities. We describe them in the context of the outputs that they will produce.

Quantitative data gathering

We shall carry out a quantitative data gathering exercise covering all of London’s local authorities, examining the number of children missing out on education in each borough and the demographics involved. Data will be gathered for this by a coordinated series of Freedom of Information requests.  This will provide vital information on the problem in it’s own right, contextualize further work, and inform our other deliverables.

Qualitative Data gathering and network building

Our second activity is a program of interviews and focus groups with children and families outside of education.  This activity will examine the process that families go through, and the circumstances that lead to children vanishing from the educational system. It will also examine the effects on families following on from this process.   One particular area of focus is that we shall be interviewing families that have successfully lobbied for educational provision.  Their stories will form examples of good practice for our ‘Warpack’ output described below.  This activity is as much about building a network and putting families in contact with each other as it is about gathering information.  By grouping parents together we allow them to access peer-support and relieve feelings of isolation and helplessness.

These activities will have three direct outputs:

  1. A quantitative and qualitative report will be written directly to target policy makers.
  2. An arts piece, examining the stories of children missing form education and advocating on their behalf towards the public and press. The types of stories told and the information to back it up will be informed by output 1.
  3. The production of ‘Warpacks’. Our initial scoping research suggests to us that a large number of the children missing due to education are children with special needs to have been excluded because the local authority will not pay for the costs for the schools to meet those needs.  This policy is often unevenly applied, with those parents challenging decisions in court being almost entirely successful.  We will examine successful cases and produce a ‘Warpack’ of materials for parents and carers to inform them properly of their rights, the success of others and the best way of challenging decisions successful.  We expect these advice packs to speed up the return of many missing children into education.

Theory of Change

Our theory of change for the project looks like this (click for larger version):

1000 ToC

Accessible version here: 10000 Theory of Change.

 

Eating and living

Screenshot 2016-02-19 14.20.51

So this is my lunch from a little while ago.  Normally this is the sort of thing that wouldn’t even make my own blog, but in this case it’s important.

I was contacted a little while ago about an eating disorder project – people in recovery, their friends, families and other people around the issue submitted recipes .

That project became a book, which launches today.   In its own words:

 

Eating & Living is a recipe book for those in recovery from eating disorders – by those who have been there. This collection of recipes has been shared by people who are recovering or are recovered, carers, friends and family of sufferers, professionals and health experts – and each of them has told their story as to why this recipe matters. There’s meals that evoke memories of childhood, those tried for the first time in recovery, those lost in the ill years and found again in recovery. Some stories are funny, some poignant – all of them offer a hint as to why caring for yourself with nutritious meals matters so much. Born out of conversations by patients on an inpatient ward, it is testament to resilience, hope and belief that recovery is possible.

With a whole mix of recipes for different meal times, tastes, and budgets, featuring a variety of ingredients, the book offers suggestions in a simple and safe format, and provides recipes for balanced meals to ensure that the nutritional and physical aspects of recovery are addressed.  This book offers support with grocery shopping, planning meals, cooking and eating and aims to play a role in helping individuals conquer those obstacles. Guidance has been provided by dieticians, to ensure that readers are confident in following the recipes.

The book communicates the message that there is no such thing as a ‘good’ food, but everything in moderation is ok, positive, and necessary in a healthy and balanced diet, and that meals are an important and enjoyable part of a happy life. Unique in both its origins from those in recovery, and its crowdsourced content, with recipes coming from recovery activists, healthy eating specialists, friends, family and more, it’s a book that can have great impact.

Recovery is hard. But worth it. Everyone is worth having a healthy and vibrant life. The aim is that this book will enable individuals to make the changes and foster long term lifestyle change.

The money raised from sales of the recipe book are going towards B-EAT, the UK’s national eating disorder charity.  B-EAT provides helplines, online support and a network of UK-wide self-help groups to help adults and young people in the UK beat their eating disorders. They campaign, raise awareness, organise events and offer support to change the way everyone thinks and talks about eating disorders, improve the way services and treatment are provided, and to help anyone believe that their eating disorder can be beaten.

Because it can. You can eat. And live.

 

Starting with Fires

All shapes and sizes...
All shapes and sizes…

 

We’ve been doing a lot of user-engagement with various stakeholders in AAC recently and a couple of things got highlighted that we’ve been worrying about for a while.  These included many people who would benefit from AAC being outside the ‘AAC community’, and a general lack of AAC information in the public eye.

We’d like to see what we can do about this. We’d like to help empower users to demonstrate use of AAC before seeking formal assessment and funding: particularly those people who are unable to immediately assess the Hub and spoke model of AAC or don’t have access to a local SLT service.

In particular, we’d like to support those people whose hub/local service do not have a budget or are awaiting funding arrangements.  We think we’ve come up with a way that will also allow us to improve the awareness of the potential for AAC amongst the public.

We’re purchasing 8 Kindle Fires, that we’re loading with Cough Drop and CommuniKate as a starting pageset.  We plan on giving them away to anyone they will make a difference to.  This could be users whose AAC devices are broken, it could be potential users who just need a machine to experiment with for a month or two, or it could be services and centres that need a tablet to be able to lend out.

We should mention – one of the things that we want to achieve is a greater awareness of AAC in general so we’re hoping that some users would give consent for a photo to appear in, say, a local paper.

If you know someone and think that a tablet with CoughDrop and CommuniKate would improve their life, then please let us know – we’ll gather up the entries and in a little while we’ll pick out ones that we think would benefit most.
This is being funded by the Awesome Foundation and London Catalyst, who are both wonderful funders.  It does also mean that we’ll be looking particularly at people within London for the majority of the devices.

If you are interested, let us know at admin@equalitytime.co.uk.

 

The 60 second silent Supertitle video

From wikipedia:

An elevator pitch, elevator speech or elevator statement is a short summary used to quickly and simply define a process, product, service, organization, or event and its value proposition.[1]

The name ‘elevator pitch’ reflects the idea that it should be possible to deliver the summary in the time span of an elevator ride, or approximately thirty seconds to two minutes and is widely credited to Ilene Rosenzweig and Michael Caruso (while he was editor for Vanity Fair) for its origin.

So we should have an elevator pitch for Supertitle.  In fact, we should have one that’s shorter than 60 seconds – because both teachers and students are busy people. More than that – it needs to be language independent – although Supertitle needs a group of bilingual students to work, we do a fair amount of work with students who have no functional English at all.

So we put together a first attempt.

Hopefully this gives people a rough idea what happens and how it helps – I tried it with a group on Tuesday and we were pleasantly surprised with how well it went.

 

I cut the code… …but I did not cut the API

eQuality Time paid its first code bounty recently.
Code bounties are a great tool, particularly for organisations our size, but most readers of the blog might be unfamiliar with the term.
When building The Open Voice Factory I made a lot of use of a python library called python-pptx.  It’s an open source library – someone people wrote a lot of functions that were useful to people reading (and writing) PowerPoint files and made it available so that everyone could use it for free.
I’d been using it a lot and unfortunately reached a point where I needed some functionality that it didn’t offer.  This was a problem.
There was an obvious solution – the library was open-source so I could just download the source code, make the changes I need, and then share it with the world.  I’d get what I needed, and other people might be able to make use of it as well if they hit that problem.
However – I’m a blunt-force-trama coder at the best of times, and any changes I made to the repository would be a hack that people were unlikely to use. Plus – I would have to learn a lot about how the code worked before I could make the change. It was looking like at least two weeks work.
However, there was a better solution.
I posted this message on the project’s github site.   It offered $400 to anyone who was willing to extend the library to do what we needed.  The original author got in touch relatively quickly, we had a correspondence and he took the time out to make the changes we wanted.
This is the wonderful thing about open source, because everybody wins.
  • We get the code we need, at much less of a cost than it would have been to write it ourselves.
  • Anybody after us gets the same code for free – so any of the hundreds of other users of the repository just got a few more options.
  • The people running the repo get to have their API strengthened, used more, and generally promoted
  • The people writing the code gets paid to do something that otherwise would have stayed at the bottom of their ‘someday-maybe’ list.
I really liked the process, it was a great way to get something done meaningfully and economically. I think that it’s a wonderful illustration of how open and transparent making is a great way of moving things forward.

On open source and medical devices…

Although I’ve posted little about it, you’ll be aware that eQuality Time is a finalist in the Inclusive Technology Prize.  Nesta, who are running the prize provided funding and support for us to look at expanding the AzuleJoe software (and by extension, the CommuniKate page sets) into a fully sustainable open source AAC solution.
It’s a very interesting project, and it’s got a lot of potential to deliver help to people who aren’t in a position to make use of exciting AAC systems.
This post is slightly about AzuleJoe, and partly about something I’m turning over in my head about open source systems.
The alert reader will note that the AzuleJoe git repository is very clear:

Disclaimer

This software is designed to let healthcare professionals and interested individuals explore a pageset for use on an AAC device.

It is NOT an AAC device. AAC devices (including software released freely) must be registered as medical devices within the EU. A freely downloadable piece of AAC software must also comply with the relevant medical device legislation in any of the 100s of countries they it can be accessed in.

 
We’re currently examining this process with a view to eventually registering, but this is a costly and time-consuming process, and we’d like to spend our time on development. Until then, AzuleJoe is for pageset demonstration, exploration, and research.
 
There are two reasons for this,  the first one is sensible – AzuleJoe was first a small piece of code for demonstrating CommuniKate and it will be a while yet (although the Nesta deadline looms) before the released version is robust enough that I’d be comfortable with it being used as a full AAC device.
The second is legal. This is the government position on medical devices.

Medical purpose

Software that has a medical purpose could be a medical device. A medical device is defined in the Medical Device Directive (MDD) as software intended by the manufacturer to be used for the purpose of:

  • diagnosis, prevention, monitoring, treatment or alleviation of disease
  • diagnosis, monitoring, treatment, alleviation of or compensation for an injury or handicap
  • investigation, replacement or modification of the anatomy or of a physiological process
  • control of conception
(The relevant european directive is: 93/42/EEC)  Digging into it, there are places that explicitly include releasing software for free on the internet.
Very clearly all AAC devices are medical devices and are covered by the law, I have NO problem with this. I think that if there is a device that might be needed to say “Help, there’s a fire!” it’s pretty clear that it should be extremely robust.
On the other hand,  there’s a clear tension here… assistive technology is so incredibility individual (a topic, we’ve covered many many times) that it very naturally has people building things that would be incredibly inefficient.  The act, as written, seems to indicate that if I asked a, say, Etsy supplier of cushions for a specially designed one for a wheelchair because I knew
If I designed cushions on Etsy, and someone contacted me asking for a specially designed one for a wheelchair because the existing support caused me irritation, I suspect I’d probably say yes.  But  93/42/EEC, as written suggests that the customer, if dissatisfied, could sue for the provision of an unregistered medical device.
As the world moves to move and more customisation of consumer goods: 3d printing of objects, custom designed clothes, print-on-demand books the medical device laws become harder and harder to enforce. More to the point,  as the world of disability moves from medical model to a co-design social model – classing assistive technology as a medical device looks less and less reasonable from a cultural perspective.
As it happens, I understand that registering a medical device of this type is relatively straight forward (it avoids diagnosis, monitoring or intrusive procedure) so we can fill out the paperwork, pay a fee, and then wait a few months (the solicitor we spoke to suggested nine months).    The issue for open source is that the world is bigger than just Europe.  To allow downloads from the US, we’d have to go though the US systems, but then there are 196 countries in the world and it’s the developing ones that have the most to gain from open source assistive technology.  The solicitor was very clear – to legitimately put out an open source AAC device we would have to do things:
  • be very clear that the software was only licence in the EU,
  • actively block (presumably by ip filtering) users from other countries
…and that seems to be Draconian and poorly thought out.
We’re going to spend some time thinking this thought and going back to the solicitors – both for our specific case and for the case of assistive technology in general.