Nine months ago I started working with Kate McCallum on a project that was pretty important to both of us. You will remember Kate from showing us how to hack a switch and from giving us a guide to creating a tactile overlay.
Some years ago Kate built a page-set called CommuniKate for her little brother. Fifteen years of AAC experience later this page-set has been used by people with a wide range of needs and on a diverse array of devices.
In January this year we found some time to compare notes at BETT. We’d both been convinced for some time that the AAC world needed open-access transferable page sets that could be used by any user on any device. I’d been researching the issue since 2010 and Kate is a veteran had years of supporting users who had been switched from one page-set to another.
CommuniKate 20 running on Grid Player.
We decided that CommuniKate should be the first open-access transferable page set. Nine months of hard slog later, it is.
Releasing a page-set is a lot of work. There were a few different layouts of CommuniKate that Kate had to draw from to create the ‘master’ version. Every icon had to be redone using creative-commons images so that we could release the whole set under an open licence. The manual had to be written. A demo had to be coded up. We had to port the master version of CommuniKate 20 over to our launch systems.
Because we’re releasing it openly people can download, use, modify and share CommuniKate and the manual without having to worry about permissions. And because it’s clear we where not going to make any money out of it we found we had a lot of help. Will Wade of the ACE centre stepped in for two of the translations, Paulo Ricca coordinated the team that gave us a Portuguese translation. The guys at DART have just started a Swedish one. SLTs stepped up to give us feedback on structure, nerds stepped up to give us feedback on code. Proofreaders, family, and friends pulled together for us on this one and we are incredibly grateful. We received material contributions from the guys at AssistiveWare and at CoughDrop, who recognised that this isn’t about competition – it’s about making the whole area stronger.
The CommuniKate homepage is at this link. We’d like you to explore the demo, have a glance through the manual and generally look around. If people have feedback, please don’t hesitate, if people would be willing to help translate even five slides to another language or please don’t hesitate. And if you are willing to transfer CommuniKate to a device not on this list, then definitely don’t hesitate.
When you Google the proverb ‘Necessity is the mother of invention’ it is attributed to everyone from Plato to Einstein.
But here is what I have discovered, Britain is full of amazing entrepreneurs who when faced with a daily problem simply invent a solution to make life easier. The necessity of invention becomes even more of a driver when that necessity is a disability related obstacle.
Take Catherine Bland, She broke her leg and was frustrated by trying to use crutches and carry her iPad and coffee around the house. So having failed to find a solution she invented the Hopper, a simple carry aid to keep her independence. Colin Albertyn had a similar experience. He damaged his Achilles heel and found that conventional crutches were simply too uncomfortable to use. So he invented the idea behind smartCRUTCH. When you look at the design it seems so obvious that’s how a crutch should look.
Another great small company called My Own Fone has stripped back phone technology to the very basics to create a phone that is so simple to use for anyone while Chris Peacock has come up with the brilliant idea to help people who have a hand tremor hold a cup more easily by inventing a cup with a rotatable handle called the handSteady, which uses gravity to keep the cup upright.
But is the marketplace holding back innovation?
The challenge for all small businesses is how do you take your idea to market? If Catherine needed the Hopper then surely so must all other crutch users. How do you take such a niche product to market?
This challenge is just made even more difficult by the fragmented nature of the disability marketplace. Much is made of the size of the ‘Purple Pound” but reaching out to disabled people is a marketing conundrum that is hard to reach. Wheelchair users have very different needs to people with sight or hearing loss or a learning disability. This has meant that marketing has been driven into marginalized specialist areas not the mainstream.
Disability is such a wide-ranging term and of course so many people simply do not associate themselves with this label.
For example if someone is living with dementia the customer may well be a family member or caregiver who might not necessary think to search disability websites for help. This makes taking your product to market even more complex.
One of the problems is that the history of the disability movement evolved from the charity model. Many charities do offer shops but they tend to focus on a narrow range of products targeted at their own end users.
Many products have their foundation in the medical model, and so the products are not exactly a stylish design, usually coming in grey and plastic!
What we need is the social model of disability to hit marketing and retail.
Even the Government thinks more could be done in this area to both make the overall marketplace better and to encourage a more innovative approach to products that makes life easier. They have launched a prize fund to help achieve just that.
The Inclusive Technology Prize aims to inspire technological innovation from British individuals and small businesses to improve or develop assisted living aids, adaptations and products that will make a real difference to the lives of disabled people.
I am also trying to find out what is already out there by launching a twitter hour at 1pm on Friday on the hashtag #InventedIthour.
This is what I want people to do:
If anyone has invented something, or has the beginnings of an idea and needs help or if you wish someone would invent something you need – then join in. Lets create a buzz and get the market moving.
I believe the disability marketplace is boring, lacks choice, creates a low volume high margin retail space and doesn’t know how to connect to consumers outside of a disability focus. It’s trapped in a medical approach constrained by a charity shop. I want to see a vibrant marketplace that focuses on product features, encourages peer-to-peer reviews, enables a secondhand and sharing economy to thrive and reaches into the mainstream to help so many more people
If anyone agrees then please join in and share your views.
Kay Allen of Really useful stuff. Kay hosts the wonderful #InventedIthour 1 pm every Friday with @RUStuff on Twitter to find and promote innovations in disability and accessibility.
So this weekend I was at Mozfest, which was awesome and is a whole year’s worth of posts on it’s own. Of the very many fascinating people I spoke to there were quite a few interested in transparency, and a good number working to improve Freedom of Information legislation. Now as you all know, I’m a big fan of freedom of information, but I thought today would be a good time to highlight how useful it is in healthcare research generally. With that in mind today’s interview is with Alexander J Fowler, who was lead author on the paper “The UK Freedom of Information Act (2000) in healthcare research: a systematic review“, which is well worth reading for anyone who doubts the usefulness of Freedom of Information in improving people’s lives. Alex was kind enough give up his time to give us some more background on the process.
JR: So you are what a might think of as a ‘classical medical researcher’ with papers like “The efficacy of the Cook-Swartz implantable Doppler in the detection of free-flap compromise: a systematic review protocol.”, can I ask what prompted an interest in Freedom of Information as both a tool and a topic of study in it’s own right?
AF: Our interest in the Freedom of Information Act stemmed from a piece of work conducted by a colleague. He was trying to get “big data” metrics on various aspects of surgical performance and found that sending a letter through to hospital management wasn’t working. He then made applications for data under the FOI Act and got all the data he needed. So we thought it would be interesting to find out who else had used this data collection technique, how successful it had been and what people could do to improve the response to their own requests.
Similarly, the FOI Act was fairly new and so we thought it would be appropriate to investigate how this potential window into the NHS was being used.
JR: In your review you look at studies that made as many as 300 requests (about the size of the Domesday Dataset), and as few as 1. Can you talk us though the correction between the number of requests and the response rate.
AF: The number of requests made was correlated with both data obtained and response rate. This is not entirely surprising, as the more requests one makes, the more data one would hope to receive. The variety of the scale of requests reflects how the FOI Act is being used by medical researchers. For some, they are making focussed requests to a single body (for example the NHS Litigation Authority) and just asking “How many cases of this type have you dealt with?”.
For others, they are doing as you did in the production of the Domesday Dataset, and asking a question (or questions) to a vast number of bodies in order to obtain a nationwide or regional answer. This potentially gives a relatively easy way of investigating across the broader spectrum of the NHS, and I think this is where the benefit of the FOI Act comes into it’s own.
JR: For the Domesday Dataset, I found that using whatdotheyknow.com was a big advantage in getting responses. Firstly because the people I was requesting data from knew that the response was public and secondly because when a trust said “I’m afraid we can’t give you that data under the Data Protection Act”, then I could send them the details of the last 90 trusts that *had* provided the data. Did you draw any conclusions about the use of ‘private’ FOI requests as opposed to the public methods.
AF: In our research, we looked at published papers and how successful their FOI applications were. Often, the reasons why data wasn’t provided weren’t available to us – but those reporting reasons stated that data not being available and “cost and commercial interests”. One other study reported concern that their request wasn’t properly understood. No papers reported using http://www.whatdotheyknow.com, but this certainly looks like a useful tool. All FOI requests in our paper were done on a private basis as far as I’m aware, but obviously with a plan to publish publicly. I know that some authors, in order to verify the quality of the data, immediately sent the data set back to the senior management at the NHS Trusts to ask them to confirm that the data was correct.
Irrespective of who you are applying for information from, it is worth remembering that there are cost limitations for the people providing the data. It is therefore important to pick a few questions, ideally just one, that is simple, to the point and unambiguous. Similarly, checking if the data is already available, or if similar data has been obtained from sites such as http://www.whatdotheyknow.com will help framing of the question, or even getting the data! The FOI Act has made it very easy to access data – and has caused an interesting shift in the way that collecting research data is funded. By sending an FOI Act request, you are effectively doing your data collection. This is paid for, at source, by the authority to whom you’ve made the request – we calculated that the combined cost to the NHS of the research presented in our paper was probably over £450,000. I think this will be a limiting factor for people hoping to collect vast amounts of data from a single source.
This work was completed a few years ago, and I’m not sure that http://www.whatdotheyknow.com was available to be used for much of the early research we reported. I have been in touch with some researchers in Canada, who have a similar piece of legislation, who are interested in developing software to enable broad requests to be made without the hassle of sending individual letters/emails. I think this is probably the future direction of FOI requests, online based, with databases of the appropriate people at the right places so you can just select “NHS Trusts” and your request would go to them automatically.
JR: Do you see FOI based research becoming a bigger part of medical research as time goes on? Or do you think there is only so big the area can go?
AF: I think the FOI Act is a hugely powerful tool for medical research – especially policy type research. In the context of the broad changes happening to our healthcare system, the FOI Act will provide an important method for us to understand the impact of these changes. A request made across multiple NHS Trusts would enable us to establish what is being funded in different regions, for example. The get out clause in the Act for commercial interests may well limit this use though.
Medical research is moving ever larger in terms of datasets – and this is a good thing. With the vast computing power now available to us, big data often means we can really drill down to investigate critical features of disease. However, there is a risk of spurious association when people trawl datasets. I think that if people are publishing their work, they should have come up with predefined outcomes of interest. The FOI Act actually helps a little in this respect as you have to ask a question of them, so you couldn’t just ask “Send me your excel sheet of hospital acquired infections”, but more “How many cases of c.diff have you had in the past 12 months?”
We considered using the FOI Act ourselves to ask all NHS Trusts how many FOI requests they had responded to for purposes of research. However, there is no requirement when making a request to state the purpose of your request so we would have struggled to identify FOI requests that were intended for research.
I hope that our paper has outlined to other researchers the benefits of the FOI Act, and given some practical advice on how to use it. Hopefully this will enable others to use the FOI Act to answer their own research questions –
JR: Lastly do you see any follow up word happening (by you or others) that we should keep our eye on?
AF: As I mentioned above, there are some exciting developments happening in the world of software, with a view to creation of a tool to enable easier access requests. I think as computing power, and wide scale collaboration further expand, the potential for data mining the results of requests should hopefully help us further understand disease and our healthcare system.
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.
A year ago today we had our first interview! Fran Brown became a Paraclimbing World Champion in Paris in September 2012, and is we caught her just after winning gold at the Paraclimbing Bouldering International Open 2013, in Laval in France. Fran was good enough to give my readers her time when there were very few of them so I’ve asked her back to give us a quick update on how her year has gone… It turns out that it’s gone well:
The last year has been pretty busy. This September was the biannual world climbing championships so a lot of my year was taken up with training for that. Pre-season training took up most of my winter, with a lot of gym work and cross training. The world cup series took me around Europe this summer where I won all of the lead events. July and August were entirely consumed with training specifically for the world championships and I’m happy to say that training paid off when I successfully defended my world number 1 ranking in Gijon, Spain, in September. Since then I’ve managed to fit in a couple of outdoor trips with some more planned for the next couple of months, and have returned to my physiotherapy studies at university.
Fran climbs in the NPD B class classification and you can find out much more about her at either http://www.franbrown.org.uk/ or on Twitter as @franrbrown. Much more importantly you can read the orginal interview here.
JR: You’ve very recently become Disability Minister, what do you think is the really key challenge you are going to be facing in role?
My top priority is sorting out the delays in the assessment process for Personal Independence Payment – I know how important this is for disabled people. I also have to ensure we get a new provider for the Work Capability Assessment and ensure the transition from Atos Healthcare is as smooth as possible. Finally, I want to do what I can in the months ahead to improve the support we offer to enable disabled people to be able to stay in or find work.
JR: As a follow up – you’ve been on my personal radar since 2007 when you (while in opposition) put forward a question on AAC, a major interest of mine, can you tell us a little bit about how that interest developed?
I saw how important technology was in some cases to enable people with a communication difficulty to communicate with the world around them. Having worked in the technology sector for 7 years (for Intel Corporation) before being elected to Parliament, I felt sure that we could do more here – hence my question in Parliament and the Inclusive Technology prize I mention.
JR: Your maiden speech was on the topic of learning disability – very appropriate to your new role – can you tell us why you chose that as your very first speech to the house of commons?
The two political parties then running my county council in the run up to the 2005 general and county elections (not mine, I’ll leave your readers to work out which) were determined to close special needs schools on principle regardless of the wishes of either parents or students. I thought this was wrong and campaigned on behalf of those parents and students. Although the elections came too late for the school in my area, the people of Gloucestershire elected a Conservative administration and we were able to stop one closure in the neighbouring area. I used this as a challenge to those who say elections don’t change anything – they can and do.
JR: I’m just back from an international meeting of disability bloggers and it was fascinating to see how differently (often worse) disability is treated internationally. Do you think that the UK is setting a high standard in terms of disability policy or are there innovations you’d like to bring in from other countries?
We want disabled people in the UK to be treated fairly, to be able to fulfil their potential and to be supported if they’re unable to work. That is at the heart of our policy and I absolutely think we are setting a high standard – and would hope other countries take the same approach. The 1970 Chronically Sick and Disabled Persons Act was the first legislation in the world to recognise and give rights to disabled people. It was followed by the 1995 Disability Discrimination Act which made it illegal to discriminate against disabled people at work or when providing goods and services. The 2010 Equality Act went further and showed that the UK is at the forefront of ensuring equality and protection for disabled people.
But we should not rest on our laurels. The employment rate for disabled people has risen gradually over the years and attitudes have changed a lot since the first Disabled Person’s Act over 40 years ago. However, sometimes it’s about a lack of confidence, with employers uncertain about employing a disabled person. We want them to realise that actually, the average cost of adjustments that disabled people may need is £75 – which can very often be paid for by the Government. This is one of the reasons we started the Disability Confident campaign – to dispel the myths around hiring disabled people.
JR: How else do you think we can achieve better equality?
The latest figures show 150 disabled people are moving into work or training every day. This is good news but there’s more we need to do to harness the talents of disabled people at work.We want disabled people to pursue their chosen career without fear of being discriminated against or stifled. With our Disability Confident campaign, we have held roadshows across the country to dispel outdated views about hiring disabled people, as well as showcasing their talents. Already more than 1000 businesses including Barclays, Sainsburys and EON have supported the campaign and are leading the way in opening their doors to disabled people – both in their recruitment and services to the public. For example, Fujitsu has become one of the first companies to introduce a Disability Passport – a single record of agreed adjustments and other relevant information that moves with an employee – making sure reasonable adjustments can be made more easily. Barclays became the first high street bank in the UK to introduce talking cash machines – using feedback from its own disabled employees. We want to encourage more forward-thinking companies like these.
Accessibility is still unfortunately not good enough in some venues in this country – including tourist attractions, sports stadiums and shops and restaurants – which is why I launched the Accessible Britain Challenge this month. The challenge is partly about fairness but we also want businesses to realise they’re excluding more than 12 million customers and their families if they fail to cater for disabled people. That’s the equivalent to the populations of London, Birmingham, Leeds, Sheffield, Cardiff and Manchester combined. There are plenty of low cost, easy things businesses can do to make their premises’ more accessible – ranging from making sure menus are in an easily readable print for people who are visually impaired, to making sure aisles and corridors are free from clutter. We have guidance and some great examples of communities that have made positive changes on our website – www.gov.uk/accessiblebritain.
JR: How important do you think technology is in improving the lives of disabled people?
Technologycan transform people’s lives, which is why I believe we need more entrepreneurs to design innovative aids, adaptations and products with andfor disabled people. Thousands of people rely on assisted living technologies to support them in their everyday lives but more needs to be done to update these and make sure they’re in line with other technological developments. A great example of innovation in this area is the former Liverpool FC player Terry Nelson’s idea to create an aqua running suit. Inspired by his own disability, he designed a suit which allows the wearer to run in a swimming pool without touching the bottom – helping both disabled people and injured sportspeople to exercise more easily. The suit is now being used by Manchester United and Real Madrid to help injured players to get back on top form.
It’s tough to get an idea like this off the ground which is why we will be launching the Inclusive Technology prize shortly. Its aim is to stimulate the co-creation of innovative or imaginative adaptations of accessible technologies or products which enable disabled people, their family and carers to live more independent lives. Innovations can relate to any aspect of life including, but not exclusively to education, home, leisure, transport and work. I would encourage anyone with an entrepreneurial spirit and imaginative ideas to get thinking!
“Ms Kate Green OBE MP” by LadyGeekTV – Flickr: Ms Kate Green OBE MP. Licensed under Creative Commons Attribution 2.0 via Wikimedia Commons
Third in our set of four political interviews Is Kate Green Member of Parliament for Stretford and Urmston and Shadow Minister for Disabilities. I’m keeping to a rule of ‘NO editorialising’ on these interviews so I’ll let the Q&A do the talking.
I’m just back from a very international meeting of disability bloggers and it was fascinating to see how differently (often worse) disability is treated internationally. Do you think that the UK is setting a high standard in terms of disability policy or are the innovations you’d like to bring in from other countries?
We often hear debate about the pluses and minuses of our membership of the European Union. The most common example of the positive influence of our EU membership is in relation to employment rights, and we know that some European countries offer better protection for employees when they become sick or have an accident. We can learn from them.
But being part of the European Union has brought wider rights to disabled people in the UK, as consumers and users of services, and as citizens. Significant progress has been made, for example, in improving access to goods and services, such as adopting European standards for installing lifts in public buildings, Braille labels on medicines, and, most famously, for buses and coaches.
Labour in Europe has been at the heart of the campaign for a fully-fledged European Accessibility Act, which would ensure voluntary European accessibility guidance is turned into binding legal standards. It’s disappointing that the European Commission dithered on producing draft legislation in the previous parliament, but it is something Labour MEPs will be returning to in the new parliament.
Labour also championed the global Web Accessibility Initiative in meetings with the European Commission, and last year fully backed the European parliament’s proposals to require EU countries to increase the number of public websites which are accessible. As we know, in the UK, access to welfare provision is increasingly being delivered online – whether that’s applying for the benefits that are so crucial to disabled people, to obtaining a blue badge, to ordering repeat prescriptions. Ensuring the highest possible accessibility standards is vital to enable disabled people to exercise their rights to social welfare support as smoothly and conveniently as possible – and can also help serve as an exemplar of best practice to commercial sites.
But perhaps most important is to underpin access and participation rights within a legal architecture that embeds the principles of equality and non-discrimination. We’re very proud that it was a Labour government that sighed the UN Convention on the Rights of Persons with Disabilities is 2009, and that Labour MEPs ensured that the European Union itself, and not just individual members countries, signed up to the Convention. And Labour in Europe has been leading the fight for a comprehensive non-discrimination directive at EU level.
Such a directive, if it had been in place, could have offered some useful protection against the harshest impact of the Tory-led government’s austerity measures. Mechanisms to report on and scrutinise compliance would have helped to expose the disproportionate effect of government policy on disabled people, and would have supported Labour’s call for a cumulative assessment of the impact of policy measures on them. A comprehensive non-discrimination directive is something Labour’s MEPs will be pushing again in the new parliament.
All politicians are used to meeting scepticism from our constituents about Europe, and I acknowledge that disabled voters are no exception. But I firmly believe, as a passionate pro-European Labour politician, that while the EU undoubtedly needs reform, its impact on disabled people and the impetus it creates for further improvements in their rights is one we dare not lose.
Me: As Shadow Spokesperson for Disabled People, you are in a position to see how a wide array of people deal with the effects of disability – is there a story that particularly touched you?
KG: Disabled people don’t need me to be touched – they need me to fight for their rights. The stories that make the strongest impression on me are the ones that make me angry. Like the experience of Paul Rutherford, a disabled grandparent who cares for his severely disabled grandson Warren, hit by the outrageous bedroom tax. Warren needs to have overnight carers, he needs extra space for special equipment to manage his condition, and it’s disgraceful that the family should be affected by the government’s rotten bedroom tax. Paul is showing great courage and determination in pursuing the case through the courts, and I’m hugely admiring of his bravery and persistence. It’s cases like this that inspired and encouraged us in the Labour party to commit to scrap the hated bedroom tax.
Me: As someone who does a lot of work in around a wide range of social care issues – what forthcoming pieces of legislation do you think will have the biggest effects on people with disabilities? Are there any that you think that we should all be watching closely?
KG: The Queen’s speech last week (JR – as shown here, I some of these interviews arrived a little earlier than others, Kate was one of the fastest to respond) showed the Tory-led government’s run out of ideas. There isn’t much legislation to help disabled people. Nothing to address the failing Work Programme that’s getting just 5% of ESA claimants into jobs – worse than if there was no programme at all. Nothing about building the affordable, accessible housing that’s needed by disabled people. Nothing to help with the extra costs disabled people face – for a special diet, extra transport costs, or extra energy costs to keep their home warm, for example. Nothing about cracking down on hate crime against disabled people.
Labour is looking at how we’d reform the Work Programme to offer more personalised, locally commissioned support to get disabled people into work. We’re committed to building 200,000 new homes a year by 2020. We’d axe the bedroom tax and freeze energy bills for two years to help with the rising cost of living. Last year, Liam Byrne announced Labour would toughen up the law on hate crime. A Labour Queen’s speech will be very different from the Tory-led government’s, with measures that will make a real difference to disabled people, their carers and families.
Me: You will doubtless be aware that Care.data has caused some controversy about it’s release program. This is a deep concern for many disabled people because they are obviously much more easily identifiable from medical records than other ‘data subjects’. Can you reassure us that this is an issue that has been looked into by your office?
KG: My colleagues in the Labour health team are responsible for this issue. They’ve already been active in raising their concerns:
The public awareness campaign has been inadequate
Inadequate provisions to ensure people with a learning disability, autism or sensory impairments receive accessible information
For most patients the only way to opt-out is to write to or visit your GP practice
The Care Act removes the Secretary of State’s responsibility for signing off any uses of data
Labour has therefore called for a number of safeguards:
A targeted awareness campaign should take place for those people with a learning disability, autism or sensory impairments.
GPs should be issued with clear guidance to ensure all of their patients are informed
All patients should be allowed to opt-out by telephone or email, as well as writing a letter
Secretary of State accountability for the release of potentially identifiable information should be restored and there should be patient representation on the research ethics committee.
As with UKIP, the process of getting hold of the Liberal Democrat Spokesperson was somewhat confusing…
Them: “Hello, Liberal Democrat press office.”
Me:Hello, my name is Joe Reddington and I run a disability blog, I’m interviewing the disability spokespeople from each of the main parties and I’d wondered if you could put me in touch with your spokesperson?
Them: “Let me have a look, I think you want X”
Me: “are you sure? X isn’t an MP… I think your spokesman is probably an MP…”
Them: “hang on…”
*hold music*
Them: “you want Stephen Lloyd”
Me: “thank you”
All of which would have been fine, except that, as Stephen is shortly about to tell you – he’s NOT the spokesman. He knows his stuff and steps up to the plate when asked, but he’s actually just a bright man that the Press Office have down as the ‘man to comment on issue’. I have to say that I was fairly impressed with Stephen overall. He knows his stuff, he didn’t duck the nasty question I chucked him at the end and overall came across as the sort affable, smart, and pleasantly combative fellow that I’d enjoy chatting to in the future.
So… with that out of the way… let’s do the questions…
Me: I’m just back from a very international meeting of disability bloggers and it was fascinating to see how differently (often worse) disability is treated internationally. Do you think that the UK is setting a high standard in terms of disability policy or are the innovations you’d like to bring in from other countries?
SL: I believe that in many areas the UK is leading the way in terms of disability policy. For example our ‘Access to Work’ scheme and ‘Work Choice’ are key examples of how UK governments have, for the last 20 years, tried to set the highest of standards. The ‘Work Choice’ programme supports disabled people find jobs and ‘Access to Work’ helps disabled people in work and to secure employment. Probably the most important international influence was the ADA (American’s with Disabilities Act) which our own DDA closely mirrored. I believe that any discussions on an international level are welcome, as it is important to share experiences as well as educate us about disability.
Me: You will doubtless be aware that Care.data has caused some controversy about its release programme. This is a deep concern for many disabled people because they are obviously much more easily identifiable from medical records than other ‘data subjects’. Can you reassure us that this is an issue that has been looked into by your office?
SL: Yes the topic of Care.Data has been considered carefully by me and my office. I understand why many may be concerned with the proposal to share information anonymously, which is why the programme has now been suspended for six months. However, it is important for the NHS to get a better picture of health and social care in England, it could lead to potential medical research.
In March 2014 the government amended the Care Bill to strengthen patient privacy rights. Any individual who tells their GP that they do not want their information shared will have their wishes respected. Beyond doubt, the information would never be sold for purely commercial purposes. I understand that in the next few months NHS England will work to consider what further steps they can take to make people aware of their rights under the Care.Data programme, and how people can opt out if they wish.
Me: So you have a long association with, and personal experience of disability (trustee of the Royal National Institute for Deaf People for example) – when you became disability spokesperson for the Liberal democrats did this feel like you’d found a place where you could really leave a mark on issues you care about?
SL: My experiences of disability go back many years, I was hard of hearing from a young age and lost my eye-sight for six months when I was in my twenties. However, I am not the specific spokesman for the Lib Dems on disability. It is just one of the areas I feel strongly about and am involved closely across a range of disability topics but because of my personal experiences, I always resist the party from pigeon-holing me.
Me: I’m afraid I have to ask – you haven’t brought up disability in the house since October (http://www.theyworkforyou.com/search/?q=disability+OR+disabled+OR+autism&pid=24754), can we assume that this is because you’ve been concentrating on your work behind the scenes on things like the All Party Parliamentary Group for Multiple Sclerosis?
SL: I have spoken about a range of disability issues this year, I believe if you searched for a phrase such as ‘hearing loss’, you will find I’ve raised numerous questions on hearing disability in the House of Commons. You may also be interested to know, that in March 2014, I lead the initiative to ensure the government declared a moratorium on their recent changes to ‘Access to Work’. I will continue to be involved with numerous disability APPGs.
We kick off our set of four political interviews with Cllr Star Etheridge, disability spokesman for UKIP, I spent some time in the last post being impressed with Star’s general efficiency and so today all I have to do is introduce her. Star is a solicitor who represents the Coseley East Ward in the West Midlands as a UKIP Councillor having joined the party in 2010.
Me: You will doubtless be aware that Care.data has caused some controversy about it’s release program. This is a deep concern for many disabled people because they are obviously much more easily identifiable from medical records than other ‘data subjects’. What’s your stance on such things as digital privacy/open access?
Star: I am not very impressed with this sort of data collection. There has been so many problems with data collection in the past with people losing laptops, memory sticks and that’s before we even consider the amount of data that they will be collecting. All people with complex health needs could be easily identified and this could lead to some people being unable to get a GP. As the CCG’s now sort budgets etc then this data could be used to cherry pick the “best” patients which will allow them to turn “a profit”. I would personally urge all people not just the disabled or those with complex health needs to arrange to contact their GP and to withhold consent to their details to being put on the database. This of course could be a double edged sword with catch 22 magnitude problems attached thereto which could end up with people who have withheld consent being unable to see their GP or indeed any GP. This is a possibility and I hope I am very wrong but the ramifications of agreeing to or withholding consent could be enormous. We have seen similar projects before in which the grand scheme is to get everything on to digital databases and they have failed miserably costing the taxpayers millions or most likely cumulatively BILLIONS of pounds. Money which could have been used to actually look after the people in this country. It happens far too often that taxpayers money is wasted to such an extent that it would have kept hospital wards open, nurses to care for them, help to support our most vulnerable so that they don’t have to endure impersonal 15 minute care visits etc etc. I am very wary of these grand IT Schemes but this is one that really worries me and many others.
Me:I’m just back from a very international meeting of disability bloggers and it was fascinating to see how differently (often worse) disability is treated internationally. Do you think that the UK is setting a high standard in terms of disability policy or are the innovations you’d like to bring in from other countries?
Star: I haven’t travelled much since I got ill and needed to use a wheelchair. I did however go over to Brussels about 2 years ago. I was rather appalled at the lack of wheelchair access. We could not get a taxi that could carry a wheelchair passengers, despite and number of kind people trying to help up us. Before going I really thought due to all the regulations etc that Brussels was likely to be more disabled friendly than most other cities. How wrong I was. In the UK there is much better access and more assistance. Even some the oldest buildings in the UK have in some ways managed to sort out wheelchair access. Lots of other helpful innovations are readily available for people who are deaf, blind and all manner of other disabilities. So my experience of Brussels in comparison to London, Birmingham, Wolverhampton, Manchester, Morecambe et al is that the UK wins hands down. Yes there are always times why you encounter a problem or two but give me the UK any day of the week. In fact we are having 3 days in Morecambe at the Middleton hotel a beautiful Art Deco building which has fabulous disabled facilities.
Me:As Spokesperson on Disability Issues, you are in a position to see how a wide array of people deal with the effects of disability – is there a story that particularly touched you?
Star: There have been a number of cases which have really vexed or upset me. I have a number of people who are living in the wrong type of property for their needs. One lady springs to mind, she has many complex needs but her main issue was that she was living in a maisonette and to get to her front door she had to get up 29 concrete steps. She was having to get up and down these steps like a toddler, going down on her bottom and back up on hands and knees. It was humiliating and made her become a sort of recluse. She hated being seen by her neighbours or other people and has had to crawl through cat litter, snow, rain so she could go for essential appointments. She had the boots on both legs that you are given at A&E to keep the bones in place so that they will heal, she was told to avoid standing up for any length of time and putting any weight on her a ankles. She was given a Zimmer frame to help but they don’t help when you have to go up and down steps outside your home. She was unable to get up the stairs inside her home, she was really in a mess. I could give a 5 page dossier on this one case. It took a little time, lots of calls, e-mails and we were able to get her council to find her a disabled friendly home. She moved in and even though there were a few little teething problems she is now safe, happy, able to sleep in her own bed not on the couch. She has changed and is now more outgoing and has a home that works for her.
Me:On a personal level, you’ve been really quite vocal about changes needed within UKIP’s policies (http://disabilitynewsservice.com/2013/05/ukip-set-for-radical-change-on-disability/) and it’s certainly nice to see policy debates happen in public rather than behind closed doors – can you tell us when we might see the new improved version of the official policies?
Star: I am hopeful that the new policy will be released in the Autumn in readiness for the start of the 2015 Westminster campaign. I can be totally honest in saying that the policies we will be putting out in our 2015 manifesto are written by people with knowledge, experience, expertise in the policy area. Ordinary members have had input so it is really a manifesto that has been put together with the support and assistance of our members and not dictated by the top brass of the the party. That’s we are the Peoples Party, it is why people are lending their votes to us, from every nook and cranny of the country. People are so tired of the corporate vision of the Old 3 parties and want to have their say, that’s why we have had public meeting all over the country, this has helped give us the peoples input directly Into our manifesto. We will continue to hold public meetings. We will always be available and will try our very best to act on local issues as soon as possible and our national policies I’d like to hope that our newly elected MP’s will do likewise for their constituents. I of course will be available to help anyone from any branch, area of the country to give them support, practical advice, fight their corner, and most of all, to be someone who listens, acts and tries to resolve their problem or as happens quite often just someone to listen.
This is the first post in a five part series. The next post will be an interview with Cllr Star Etheridge who is the Disability Spokesman* for UKIP and next Monday’s will be an interview with Stephen Lloyd, MP for Eastbourne and Willingdon representing the liberal democrats. On that Wednesday, we’ll have Kate Green, MP for Stretford and Urmston and Shadow Minister for Disabilities and finally on the following Monday we’ll have an interview with Minister of State for Disabled People Mark Harper.
Today we have a little bit of background, a graph, and a couple of comedy moments with UKIP.
This blog has never been party political. If you wish to see the world in terms of right and left then you can see posts you might class as extremely right wing, interventionist, free market, and extremely left wing among a general ‘let’s all help each other, open-data-will-save-us’ theme.
This makes it pretty unusual. Particularly as the larger UK disability blogs (see for example the list of the Top 60 disability blogs) regularly straddle the line between ‘Party activist blogging about disability’ and ‘disability activist blogging about politics’ (Sue Marsh being an excellent example).
However, 2015 is an election year in the UK (sorry US readers) and I think it would be good to be doing a certain amount of work putting out data, particularly disability relevant data, that can help people reason about the choices they should be making.
One of the advantages of being fairly widely read and being politically neutral is that you can get a certain amount of trust from all parties when you contact them. So I contacted the four major parties, and requested an interview with their disability spokesperson. These turned out to be:
Conservatives: Minister of State for Disabled People Mark Harper MP.
Arranging the UKIP interview was one of my more comedy moments, entirely because of my own biases… You see the phone call went like this…
Operator: (A sensible sounding woman with a pleasantly patient telephone manner): Hello, UK independence party. Me:Hello, my name is Joe Reddington and I run a disability blog, I’m interviewing the disability spokespeople from each of the main parties and I’d wondered if you could put me in touch with your spokesperson? Operator: Certainly, I know just who you need, have you got a pen? Me:Yes Operator: Now hang on, because it’s a little bit of a funny name…
At this point I panicked. I had a terrible thought that the name was going to be, ‘Pedro’, or ‘Siobian’, possibly ‘Petra’. I was horrifically aware of the possibility that the operator was going to be mildly racist over the phone and we’d have to have an argument.
Me: “Ah…” Operator: “It’s Star” Me: “Star. Wh- Star?” Operator: “Yes Star Etheridge, her email address is…”
I was unaccountably relieved, and I’d like to publicly apologise to the UKIP office staff for making a bit of a snap judgement based on this sort of thing.
More to the point, Star was easily the most efficient of the people I corresponded with. I had her interview entirely completed with in a couple of hours. The total time I was in the UKIP system (as in, the amount of time between first contact and interview, less the amount of time that emails were sitting in my inbox) was only 185 minutes.
By comparison, this is the figures for the other three interviewees.
UKIP: 185 minutes.
Lib: 15 days
Labour: 11 days
Conservatives: 169 days
In defence of the Conservative Minister, I originally got permission to interview Mike Penning, and most of this delay was while he was Minister. Plus there are difficulties co-ordinating the DWP and Mark Harper’s constituency office, and I imagine they had a little less free time and a bit more hoops to jump though than the others…. so we should definitely take that into account. If you’d like to visualise this, here’s the graph:
Time each political party took to answer interview questions….
For each interview I asked some questions unique to the candidate – and some that were largely the same across all interviews – I invited you to judge each of them on their answers. Some are more ‘political’ than others, and some more radical…
Of course, if you’d like to receive the interviews a little earlier than everyone else, then by all means subscribe for updates 🙂
*I understand ‘Spokesman’ is the title used by UKIP and Cllr Etheridge
Today’s guest post is from Nicole Caron, talking about a somewhat underreported part of communication disability – that of taking the ‘un’ about of ‘unintelligible’. If you like what you read I strongly recommend you visit their crowdfunding page… Nicole was very patient with me on the back and forth of this guest post… “No, my readers know all about that”, “No, my readers are much more technical than that…” and we had lots of fun haggling over the words.
As regular readers of this blog will know, being unable to express and communicate your thoughts and feelings is an everyday reality for millions of people (1.5% of the Western World’s population) who suffer from speech disabilities. This is very hard and frustrating for them and affects much larger circles in society such as families, caregivers, friends and society as a whole. Until now the approach taken by developers of assistive technology for people with speech disabilities has completely bypassed voice, opting to use other modes of communication including communication boards that replace speech with symbols and images, head-tracking, eye-tracking, and switches. These solutions are often expensive, awkward and unnatural to use and degrade natural speech. There are no products on the market today that allow people with speech disabilities to communicate using their voice.
At Voiceitt, we are trying to fill this gap. Voiceitt is developing Talkitt, an innovative speech technology which is able recognize unintelligible language and translate it into understandable speech. Ultimately, Talkitt is giving individuals with speech impairments their voice back! Talkitt’s slogan is “This is my voice”.
TalkItt is a voice to voice application that will translate distorted pronunciation into understandable speech. For example, a person can say “o-ko-la” and software will translate it to “chocolate”. Our software is in the development stage but we’ve had excellent results so far.
Talkitt is speaker dependent and requires the user to create and maintain a dictionary of utterances and associated text and/or icons. The creation of the dictionary is the calibration phase. Once a dictionary is ready, a recognition stage may begin the application will perform pattern matching with enhancement of intonation features. If the user puts a word into the dictionary then the application will be able to recall that word at a later date and relay what the person is trying to say. The user will be able to access the application without help because during the recognition phase it is fully voice activated. The dictionary can be categorized so as to reduce mistakes by the machine.
Our approach is based on simultaneous exploitation of both the content and the intonation of a speaker voice. Today’s speech recognition solutions are based on detection on the ‘word’ level and the ‘phenome’ level which are statistical based. When speech is non-standard, these approaches no longer work. Talkitt works in a different way. It is user dependent and language independent. The user builds a personal dictionary that contains their speech patterns and their meanings, and by using pattern matching, we look for the highest similarity between what the user just said and what exists in the dictionary.
An example for one of VoiceItt’s innovative approaches is adaptive framing – an approach based on speech events that enables the division of speech to homogenic frames – this approach results in frames that contain the same vocal information but with varying durations. This duration is determined by the vocal information itself, thus allowing a much more accurate modelling and classification steps. Talkitt does not require specialised hardware and can run on any computerized device (PC, tablet or smartphone) and can be integrated in Apps (browsers, games, communication boards) and assistive devices (smart phone, wheelchairs, emergency calls). This software-based solution gained enthusiasm from field experts worldwide and has the potential to dramatically improve the quality of life of millions of people.
