News

Funding Success – Awards for all and Supertitle!

So I’ve the last few months I’ve been talking a little about the Supertitle project,  We introduced the concept, talked a little bit about the prototype and dealt with our first funding rejection.
As a bit of a change of fortunes.  This turned up in the post:
letter from Awards for All awarding funding to Supertitle
Awards for all have given eQuality Time £8,995 to pilot the project across London.  The grant covers equipment, training, publicity, and has ring-fenced budgets for all the little bits of overhead that an organisation runs into – things like insurance, accounting, and so on.
We’re a transparent organisation, so we can show you the original application form (with some parts, like director’s addresses redacted).  The intention is that we make as much of the process transparent as possible, so you might get some fairly boring posts coming up over the next few months.
This is a big boost for us, we’ve actually known about it for a few months but we’ve been waiting Award’s for All’s permission to announce.  We’ll be looking for schools for a full pilot soon, so do please get in contact if you are interested.
As you can see by the date of the letter – this post was going to go out months ago – indeed, I thought it had. It was only when I did the logo post and tried to refer back to this one that I realised it was missing… 

Andiamo – 3D printed orthotics for disabled kids

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Today’s feature comes from Samiya Parvez of Andiamo – everything about this story made me want to share it- Joe.

In 2003 I gave birth to our son Diamo. He was born severely disabled and was diagnosed with Cerebral Palsy and he was quadriplegic. Little did we know how profound an impact Diamo would have on our lives and potentially that of millions of others. Today, three years after our son’s death, we’re using Diamo’s legacy and our experience with caring for a disabled child to improve the health care industry.

 

From the day Diamo was born until the day he passed away, he required around-the-clock care. One crucial element of this was giving his body support through medical braces, called orthotics. Without his back brace he couldn’t sit up straight or eat properly. He wasn’t even able to sit in his wheelchair without slipping out of it. He could become house bound as it was unsafe to put him on his wheelchair without a back brace. As a growing child he required new braces regularly, making simple things like buying him fitting, comfortable clothes almost impossible. We had to wait for his ankle foot orthotic to be fitted before we could buy him shoes! He would need to be measured again in 6-9 months anyway. However it could take up to three months from measurement to delivery, meaning he had often outgrown it before he got it! Now the waiting times have increased to six months for children and some adults have to wait for a year.

 

As a result, we spent a lot of time and effort fighting the health system to improve our son’s well-being. We kept researching to find better alternatives. But realised there was nothing out there that was better, faster to make, and cheaper. For example to get a specialist back brace that was more comfortable to wear during the night, we had to pay £4000. But who can afford that every 9 months and for multiple orthoses. In the midst of our research the stories of 3D printing were coming up but nothing caught our imagination. Unfortunately Diamo passed way before we found a solution.

 

A year after Diamo had passed, Naveed (my husband and cofounder) attended a tech conference called MonkiGras and came up with a revolutionary idea. He learnt that 3D scanning and printing had come a long way, it was now good enough to create orthosis.

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So why was there no one doing it for children’s orthotics?  Project Andiamo was born at that conference, and we spent the next 10 months researching this as we couldn’t believe that no one else was doing it. We needed an expert in technology, so we pitched our proposal to one of our friends, Lee Provoost who is also a tech guru, and he was so impressed with the idea that he joined us.

As a team, Naveed as CEO, my self as the COO and Lee as the CTO we started to work out how to make this happen. By November 2013 our mission had become to show how 3D scanning technology and 3D printing will reduce the wait times to get these orthotics from 6 months to 48 hours.

 

We had spoken to several funding bodies and were approached by a social impact funder called Bethnal Green Ventures. It was clear to us that they were the sort of people that could help us make this viable. Within six weeks we had produced three prototypes, proving viability at a fraction of the time and cost of current manufacturers.

 

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The accelerator was for six months, and by the time we “graduated” we realised that the problem that we were trying to solve was the tip of an iceberg. And that Project Andiamo was going to have to change. Approximately a 100 million people worldwide need an orthotic, this is increasing by 6% a year. However capacity to serve these people is going down, in the UK there are just 270 orthotists serving 2 million orthotic users. This is the same picture all over the world.

 

The question we needed an answer to was: How will we get to each and every child who needs an orthotic when there aren’t enough people that can make them?

 

We needed to build a company that will solve this complex global problem and we couldn’t do this as a “project”. Andiamo was born.

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We now know that we have to build a software that automates this archaic industry. A Software that learns about childrens’ body mechanics and can create the right orthotic first time round.

 

The route to this is by getting more families into our service now and making fitting 3D printed orthoses for their children. Not only are we helping families get better orthoses and a more pleasant experience, Andiamo can use that experience and data to build a platform that enables us to make orthotic service and products better, faster, and cheaper globally.

 

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In January 2015 Rosie Unite joined us as our Chief Commercial Officer with over 25 years experience building businesses, to help us build a company that can solve this globally.
Our team has now grown to 11 people. All who truly believe that they can make a difference and take the company to the next level. With their help, we are now funded by NominateTrust, and are in the Big Venture Challange. Also, we are through to phase three of Future Internet CHallenge eHealth (FICHe), who’s aims are to accelerate SMEs and startups that develop innovative applications in the eHealth domain using FIWARE technology.
 

This journey started because I wanted to make our son’s life better. After he passed I had no idea what I would do. It took me a long time to realise that I had learnt so much and become an expert in so many fields because of him. We didn’t start Andiamo because we thought we might change the world, but because we wanted to turn our pain into something good.

 

John Pring

John Pring HeadshotWe finish our series interviewing disability journalists with John Pring, an experienced journalist who has been reporting on disability issues for nearly 20 years.

John launched Disability News Service in April 2009 as an independent news agency to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people.  He’s also the author of Longcare Survivors: The Biography of a Care Scandal.

———–


JR: It’s often thought by developing writers that they have a choice: either have an editorial line to obey and a salary or be free to write what they like as long was what they like to write is free.   Yet the Disability News Service manages to be both independent and self-financing.  How do you manage it?

JP: But DNS does have editorial lines. They are just heavily disguised, and set by me. The whole point of DNS, certainly as it has developed over the last four or five years, is to provide a vehicle for disabled people to comment on the issues that are most important to their lives. If disabled people’s organisations want to speak out on an issue, then I will try and write a news story about that. But the second editorial line is that I try as hard as I can to report from a disability rights perspective. I’m sure I don’t always manage that, but I do always have that thought in the back of my mind. It’s not as easy as it sounds, but fortunately there are many disabled people out there with a much deeper grasp of the concept than I have. Maybe that hasn’t answered the question. It’s self-financing because I run it myself, but I do have subscribers that pay to use the stories on their own websites and in their magazines and newsletters. I also have advertisers. It has always been vital for me to ensure that the presence of those subscribers and advertisers does not affect the stories I write. Fortunately, to my recollection, none of them – in nearly six years – has yet asked me not to run a story or to tilt a story in their favour in exchange for their continuing subscription. That doesn’t mean that I don’t write about my subscribers occasionally, just that I try to treat their stories like any others.

I think I’ve proved my independence, as I have written several critical stories about subscribers over those six years, and they’ve taken it well, which reflects well on them.

If the story is there, it has to be written, or else there’s no point doing what I do.

I can’t deny that my heart sinks a little, though, when someone comes to me with a story criticising a subscriber or advertiser. It’s rare, but it happens.

 

JR: Perhaps as a linked thought, I release all (my own) content on joereddington.com to the public via a Creative Commons Licence partly because I think that’s a groovy idea, but also because I suspect that I don’t have the ability to enforce the copyright if I tried..   Obviously as an ‘earning’ journalist you aren’t a position to release to an open licence, but do you find you have problems defending your copyright?

JP: Mostly, whenever there has been a problem with this, it’s been resolved quickly and easily. A lot of people don’t understand copyright and how important it is to a self-employed journalist.  When I point out that the stories belong to me, and it’s taken a lot of hard work to produce them, and it’s how I pay my rent, they are apologetic, and put it right immediately. Not always, though. It’s useful to be a member of the NUJ, too. A warning letter from the union’s freelance office can work wonders.

 

JR: It would be easy to pick out major disability stories from the last year or so – but what do you think will be the big disability stories coming up in the next 12 months?

JP It partly depends on the result of the general election. If the government is re-elected in some form, then we can probably expect more of the same. But if not, and there are new people in power, I think it will be fascinating to see what kind of evidence-gathering is possible on the impact of the last five years on disabled people. My suspicion is that there are a lot of skeletons in dusty cupboards, within the DWP particularly, and hopefully they will be brought out for examination… Other than that, the continuing fight to prevent the legalisation of assisted suicide; the media – the broadcast media particularly – finally opening up opportunities to disabled people, and not just in front of the camera; lots of new technology developments that will assist independent living, but at the same time many disabled people facing possible cuts in social care; and – sadly – I don’t think we have yet heard the last of Oscar Pistorius, and with Rio 2016 less than 18 months away, who knows how that sorry story might yet develop.

 

JR: In addition to your well known finger-on-the-pulse work, you’ve also done some long-form writing about the Longcare scandal.  Longcare isn’t that well known, particularly amongst people my age or younger – what inspired you to write the book?

JP: Two reasons. Firstly, Longcare was my first big story as a young reporter on a local weekly newspaper, the Slough and Windsor Observer, and there were so many strands to what happened, so many sources to unearth and persuade to talk to me, and so many questions to answer. But I don’t think that was why I became so obsessed with the Longcare scandal, and it was an obsession – for the first few years nearly every available spare hour outside my day job was spent investigating, writing and researching. When I was handed the leaked council report that led to our first news story exposing the abuse allegations, I would have been horrified if I had known that I would still be writing and thinking about the story more than 20 years later. I think it was not just the untold stories of the survivors and the horrors they had been through, but also my own uncertainty about how such a terrible thing could have happened and how the abusive Longcare regime could have lasted so long. It took me a long time to realise that the story was not really about Gordon Rowe, the abuser at the centre of the regime, but about the discrimination, inequality and hostility towards disabled people that has become ingrained in society over hundreds of years. But I’m sure a part of me was aware of this at some level. I suppose it was a story worth writing.

The second reason was a more personal one. The huge investment of time and attention over those years was a distraction from my own mental health problems. To be blunt, it kept me occupied.

*Longcare Survivors: The Biography of a Care Scandal, is available from Amazon or through the DNS website: http://longcaresurvivors.co.uk/

Dan Parton

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Second in our series interviewing disability journalists is Dan Parton, editor of Learning Disability Today, the go-to magazine and website for learning disability news. Dan was kind enough to get to my questions on a busy day.  As you’ll probably work out from the first question – this interview was conducted a few months ago – Dan was the most prompt reply. 🙂

 

JR: So you are fresh from your review of the top disability stories of 2014 – was there anything in particular that stood out for you?

DP: There were several stories that stood out in 2014, but perhaps the biggest was the tragic death of Connor Sparrowhawk in an assessment and treatment unit – which has been since called an ‘unnecessary death’. His mother’s campaigning to get justice for her son – nicknamed ‘LB – laughing boy’ – has been remarkable and could even lead to a change in the law, with the LB Bill, which is gathering traction at the moment.

JR: As the editor of a learning disability publication you are right at the nub of journalistic integrity – a lot of stories that cross you desk feature very vulnerable people – how does the need to cover stories responsibility weight down on you at all or do you accept  it as part of your role?

DP: Covering stories responsibly is an accepted part of the role. As editor, I want to tell a person’s story, but I’m not after a sensational headline. Many of the service users involved are vulnerable, and I am always mindful of confidentiality issues – often people in case studies have their names changed to protect their identity. I don’t want to cause a person with a learning disability – or their family – any unnecessary stress by making it sensationalised. Being a specialist magazine going out to an audience in the sector, I don’t feel stories need to be sensational.

 

JR: Since taking the helm of learning disability today in 2010 you’ve been in charge of 24 issues, what where the stories that most surprised you with their reaction?  Both a post generating more controversy than you expected and one that you thought was red-hot but sank without trace (forgive the mixed metaphors).

DP: In general, the stories in the magazine get the response I expect. Stories on Winterbourne View and its aftermath tend to get a lot of response, as do ones on healthcare inequalities, for instance.

JR: Six issues a year means that a lot of work goes into each one – do you find that you ever feel frustrated by the place of news? Do you find you have to discard stories because they would be out of date by the time the publication came out?

DP: With only 6 issues a year, news can be difficult because, as the question says, sometimes stories are out of date before the magazine comes out – part of the reason it only gets 2 pages. As a result I try to put in items that are less time-sensitive but useful or interesting – such as if a new best practice guide has been published, or quarterly statistics, or service-user focused items.

However, I’m not frustrated at this as I post news stories as and when they happen on the Learning Disability Today website (www.learningdisabilitytoday.co.uk) so readers can get the latest news, but then get more in-depth content in the magazine.

Frances Ryan

Kicking off our series on ‘voices in disability’ we have Frances Ryan!

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Frances Ryan writes for both for The Guardian and New Statesman as well as occasionally appearing on shows such as Sunday Politics, Radio 4’s Woman’s Hour, and Radio 5Live. She has a doctorate in politics, exploring inequality in education. She tweets as @DrFrancesRyan and her website is differentprinciples.co.uk.

Interestingly the Guardian doesn’t have a set Disability correspondent. I picked out Frances by the writing a computer script that downloaded every Guardian disability article since 2012 and ranking the authors – Frances was well out in front.  I’m glad she was – it’s clear from the interview that she’s smart, funny, and facing the right direction 🙂

JR: Given that the Guardian gives more weight to disability topics than most of the other papers, and you are writing more of the Guardian’s disability content than anyone else, that arguably makes you the UK’s most read disability journalist (possibly rivalled by the BBC’s ouch blog) – is that something you’d considered, and do you think there is a responsibility that comes with that?

FR: I know when I first started working, I found some people assumed that – because I was a disabled journalist – I was only going to be interested in disability. And it’s important to be able to say “Actually, I’m not defined by this. There are lots of other things I can talk about.” When it comes to disability, also, I think one of the interesting things about it as a subject area is that it can merge into very different territory; anything from government policy and poverty to the arts or representation. So, I think, you sometimes want different people bringing in different expertise rather than just being drowned under the blanket of ‘disability.’ What I do try and do – and I think both The Guardian and New Statesman are great at this – is ensure the disability perspective of a story is covered, that it isn’t ignored, that it gets mainstream attention. The Guardian, for example, brought in a recurring disability column in 2012 called In Plain View which I write for the social affairs pages.
Someone did tweet me once saying “You’re a disabled female journalist writing about disability. Try not to get run over by a bus!” Which y’know, is both helpful life advice and also says something about how you are quite rare in this position. I’m very conscious of the fact that just because sometimes it’s my name in The Guardian doesn’t mean there aren’t huge numbers of disabled bloggers doing ground work on issues that affect their lives personally. I try to read as much as possible and I get great help from campaigners like Disabled People Against Cuts (DPAC) and the disabled readers who contact me and allow me to use their experience to show the impact of a particular Conservative policy. I don’t ever want to claim to represent all disabled people – just like a male or gay writer wouldn’t be asked to represent all men or LGBT community – but I do think a certain level of responsibility comes with having some sort of platform. Particularly because I’m very aware that, as disabled people, this is a group who don’t often get invited to talk.

JR:do you worry that the disabled bloggers and disabled readers you mention are somewhat self-selecting? In the wider disability space there are many disabilies that are either difficult to consider from a first-person perspective (i.e cognitive disability) or harder to discuss openly (disabilities related to sexual function)  – Is it harder to develop good sources in this area?  

It’s funny, I think female writers are often encouraged to do that first-person thing – this sort of ‘tell all’ personal pieces – as if we can’t just write about economics or male violence. But with disability, I’d actually really like to see more of that. I am always really happy when I read something on, for example, disability and sex or something intimate and awkward disabled people aren’t really meant to talk about. That isn’t about voyeurism or even awareness for non-disabled readers – I don’t think that’s our purpose in life – but to push past those ‘no go’ barriers in what you see in the media for disabled people. As you say, that stuff is quite hard to discuss – and it can get to a point where the lack of voices in certain areas make disability seem far more homogenous than it is, I think – but it is really valuable. For me, personal experience probably helps motivate what I write but I try to just work on what I’m interested in, not necessarily what I’ve lived through. What matters ultimately, I think, is if you’re passionate about what you’re covering because, as they say, if you don’t care, no one else will.

JR: You’ve just become *Dr* Ryan,  congratulations!   One of the things that’s a common theme on this site is having academics present their work in a more journalistic, but still context-driven, fashion in an effort to beat Hossenfelder’s famous graph. Do you think that ‘quality’ journalist is becoming more synonymous by the writers that have a research or ‘expert’ background – (I’m thinking of the Guardian’s own Ben Goldarce as the most famous example)?
FR: Thank you! I mean, obviously I should claim that Drs make the best columnists but clearly, that is a lie. It’s never going to be the case that you need to have spent a decade in higher education to be able to offer substantive work in journalism. But I like that that some people are spending time developing academic expertise and that you can come into it from a different route than a general journalism degree. And on a wider level I think the bridge between academia and mainstream journalism is a really valuable one. Part of that is simply being able to use research to back up what we’re seeing or highlight what we’re not seeing. So for me, research from my own university – Nottingham – about people with learning disabilities being victims of forced marriage was, I think, one of the most important things I’ve covered for The Guardian, and something that without that research might not have come to light.

 

JR: are there any particular examples where you were slightly surprised to see disability come up as a factor?  (My own favourite was in gun control

I think most weeks, a story comes up when disability’s flagged up as ridiculously relevant or a cultural prejudice around disability distorts the reporting. Abortion stands out, for me. I’m hugely pro-choice and I’ve written a few times about how abortion stories often use disability as a bizarre ‘add on’ – presented as either a strange justification by pro-choicers or hijacked in a really disingenuous, grubby way by anti-choicers. I think also when disability isn’t mentioned in reporting is as telling as when it is. I obviously like to train my brain to yell “FEMINISM” during most disability stories – and that’s the same vice versa. But mainstream discussions of domestic violence, for example, rarely mention disability. When I did a feature for G2 on disabled women who were victims of domestic violence I was genuinely surprised that this seemed new to readers. We’re twice as likely to be victims of abuse than non-disabled women but read most coverage of DV, and disability is completely ignored.

 

Interview Time!

So it’s time for another series of interviews.

 

I’ve actually been working on this one for a while but schedules being schedules, it’s only now that we’ve reached the point were it has come together.

This one is a little bit more subtle than previous series; when I interviewed the Minister for Disability, his Shadow, and the other party spokespersons about disability it’s very clear that they have a massive influence over the lives of disabled people.  Similarly, when I interviewed charity heads, it was fascinating to see how the people at the top are trying to meet the overall need.

This time, I’m interviewing journalists specialising in disability.  This is somewhat different – first of all it’s slightly up in the air how much influence journalists have. Clearly it’s quite a lot, but given that their reporting is subject to commercial influcences, editorial lines and so on, it might be less than one thinks.

Particularly interesting for me is where the line between journalist and campaigner gets blurred. On the one hand we are used to newspapers running campaigns on medical issues, social issues, and even political parties, but on the other we see cases like this one, where a reporter’s article about some elephants was removed because she’d also signed a petition about the elephants. For journalists specialising in disability, many of whom identify as disabled themselves, how does this work out?

So I set about finding a set of interviewees giving a broad overview of disability in the media. We have three – one mainstream journalist, one news agency director, and one editor.

 

The three interviews you’ll see over the next two weeks are:

 

Frances Ryan

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Frances Ryan writes for both for The Guardian and New Statesman as well as occasionally appearing on shows such as Sunday Politics, Radio 4’s Woman’s Hour, and Radio 5Live. She has a doctorate in politics, exploring inequality in education. She tweets as @DrFrancesRyan and her website is differentprinciples.co.uk.

Interestingly the Guardian doesn’t have a set Disability correspondent. I picked out Frances by the writing a computer script that downloaded every Guardian disability article since 2012 and ranking the authors – Frances was well out in front.  I’m glad she was – it’s clear from the interview that she’s smart, funny, and facing the right direction 🙂

Dan Parton

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Second in our series interviewing disability journalists is Dan Parton, editor of Learning Disability Today, the go-to magazine and website for learning disability news. Dan is representing the editorial end of the spectrum.

John Pring

John Pring Headshot

We finish our series interviewing disability journalists with John Pring, an experienced journalist who has been reporting on disability issues for nearly 20 years.

John launched Disability News Service in April 2009 as an independent news agency to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people.  He’s also the author of Longcare Survivors: The Biography of a Care Scandal.

 

 

 

 

 

A little law goes a long way, and it’s lovely stuff!

Colour 2014

 

New Feature writer! Belinda has been doing legal framework training and consultancy in the adults’ social care sector for 15 years now. She blogs over at Schwehr on CARE and very kindly agreed to pop over and talk a little law with us – Joe

 

For me, the decision to overhaul social care / community care law with the Care Act 2014 (just in force since April 2015) represents a sort of unintended ‘long service’ gift for hard labour in the sector (not a retirement present, at least not yet!). It’s a formalised acknowledgement that law DOES matter – in a field where most social work graduates have never been to a lecture about the difference between private and ‘public’ law, don’t know what judicial review is, and why you can’t actually get it, in the Court of Protection, and certainly wouldn’t know the difference between the European Convention on Human Rights, and the UK’s own Human Rights Act. I don’t think that it’s too hard to teach, but lecturers on social work courses will very rarely have studied law or done law, and I guess that the curriculum just becomes a perpetuation of what they feel comfortable including in the course…

 

I do what I do because I can’t think of an area of institutional activity where up to date legal awareness could be any more needed – as a bulwark against arbitrariness, and culturally embedded certainty that a council would have to be really unlucky, to be really astutely challenged by any person who might have care and support needs. The belief is that the vulnerable will not bite the hand that feeds them, at an institutional level, I find, although relying on that sort of assumption is the very opposite of what social work students are taught, in terms of values. The idea that social workers have special powers of intervention in the lives of adults, for good, under statutes, but don’t actually need to know where their powers start and stop, is still absolutely astonishing to me, and the surrealism and double speak in the sector never cease to amaze me. But working to temper all that, with a bit of legal literacy, within the social care sector, has made life as a lawyer infinitely more interesting and entertaining than 25 years doing tax law or mergers and acquisitions would have done, I am certain!

 

My hope for the Care Act is that its provision – as a mandatory statutory duty – of independent, funded advocacy for the most important bits of the assessment and care planning process – will change the game for people with cognitive impairments and for those without as well. I’m hoping it will do this through the impact of the existence of skilled advocates throughout the country, influencing everyone else’s gut feeling about how good they have to be at their jobs, rather than complacent or acquiescent in some of the dodgier excesses of managers, (often interims, on Performance Related Pay for cutting the spend). That is, everyone will become more aware that it’s legal rights that underpin some of the touchy feely bits of the Care Act guidance and architecture, not just waffle and sentiment or ‘values’. We get the social work staff we deserve, to my mind, and we must re-professionalise them, and invest in their continuing professional awareness of how to find out whether the law just changed!

Here are some examples:

 

Advocacy itself: funding skilled knowledgeable assertion of a person’s rights is a practical step towards maximising the prospects of involvement of someone of less than full capacity – something we should already all have been doing under the MCA, since 2007!

 

Involvement rights (eg in assessment, care planning, revisions and safeguarding): public law, and particularly the common law standard of fairness for public bodies’ decision-making, in this country, is where the inclusive notion of ‘Nothing about us without us’, actually comes from. The two most basic aspects of public bodies’ procedural fairness obligations are ‘Hear the Other Side’ and ‘Don’t be Partial’ – ie be unbiased, and seen to be unbiased, when making decisions which affect members of the public. Advocates will be asking how council deputies could possibly be making decisions about deferred payment arrangements if the top-ups covered by them aren’t defensibly legal top-ups in the first place, I am thinking!

 

Wellbeing – incorporating a presumption that people themselves are in the strongest position to make judgements about their own wellbeing – derived from the presumption of mental capacity, which can only be displaced by reference to a test that is the same for everyone, but always issue and context specific…

 

Funding for sufficiency: care plan allocations have always had to be based on the sector’s professional view as to what is adequate, appropriate, reasonable and sufficient. They have never been able to be cost capped or budget governed, as it happens. But if one doesn’t know the case law, the reality that money DOES need to be saved nationally would probably be what most purchasers, providers and service users and families have focused on. For some, that would have meant a lesser package than was legal.

 

Best Value – this has never been ‘the cheapest solution’ but has always meant ‘the most cost effective solution’, allowing for lots of trading off between cost and benefits….

 

Duty vs discretion and MUST vs should…. – public law says that ‘Guidance’ is not law, but if the statute under which it’s been written says that one must act under it, then it cannot be ignored, without a very good reason; it cannot be cherry-picked from simply according to managerial whim. The only very good reason I can think of is that it contains an error of law: the law in this country is that although government may well make up Guidance to explain the meaning of a statute which its own lawyers have drafted, it is the judiciary which is in charge of the actual interpretation – so sometimes, the Guidance is said to be misleading or just plain wrong.

 

The most recent example of that kind of crossing out of guidance came out of the Supreme Court last week: the Cornwall decision that in most cases involving highly incapacitated young people, the council that will be legally responsible for commissioning care for a young adult with disabilities is in fact the council which was responsible for the children’s services provided to that person when under 18 – not where the child was fostered to, schooled, sent to for health care reasons and not dependent on where one or both natural parents ended up living. The Care Act guidance will need to be re-written because that is not what it said, nor what the Secretary of State was wont to determine, when asked. It means that transition workers’ lives have got easier, and there should be less interest in exporting disabled children out of area.

 

Last Friday, too, readers may be aware that the Care Act phase 2 Dilnot provisions were deferred by the government because of lack of money and lack of preparedness – and probably forever – until 2020 at least, which is another administration away, most likely.

 

Those provisions have undoubtedly complicated the Care Act, and I would say defeated its ambition to simplify the system. When the BBC ran the story, it had to explain what social care IS to the nation, so low is its profile, and so unheard of, is it, by most people in our society. This has got to change!

Until it does, and because nothing seems to make it accessible or significant to the average person, until their own relatives need it, I am busy blogging on Schwehr on CARE, (www.schwehroncare.co.uk)

And trying to ensure that people don’t feel so lost in the system. I want people who use services to grasp that Knowledge is Power in this field, and that a little goes a very long way. Our first success has been blogging openly about a carer – he wanted a properly commissioned service which he can use for cleaning and gardening in his own home, but the carers’ organisation doing assessments for the council concerned, said that he had to have a direct payment and sort it out for himself. One week later, the Care Act is being complied with – hooray! 🙂

Please use social media if you can help in furthering this aim, and make it a place that people look to, for a steer on what is lawful, as well as what is good practice.

Inclusive Technology Prize finalists!

 

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Kate and I are in there somewhere!

 

Bit of an announcement – AzuleJoe, has been chosen as one of the ten finalists for the Inclusive Prize (we’ve known for a little while, but the embargo has only just been lifted).
We’d reached the semi-finals a few months ago, I didn’t do a post on it at the time for a few reasons – I didn’t feel it was interesting enough for the readers, and it was a relatively self-centred thing.  More to the point, I was still getting my head around the business aspects of the prize and hadn’t got a far as a clear vision about how everything fitted together.
Kate and Joe holding a tablet in front of an 'inclusive technology Prize' sign
This is us showing off something that I haven’t even mentioned on the blog yet… *blush*
I have now reached that point and we have a clear view on how we can keep our development open source, ensure that it’s free at the point of delivery, and user-focused, while still presenting strong business outcomes.  More on that in a future post.
As a sidebar – we were slightly unusual in avoiding publicity at this stage – because of my position as a blogger I was getting a few press releases from (to be fair, media departments that worked with) other competitors about their work and how the’d reached the semi-final – although to be fair, everyone who sent a press release also made it to the final…     
A lot of the other semi-finalists do have extremely strong ideas and I intend to be featuring some of them on this blog in the near future. I’m going to start with my favourites of the ones that didn’t make it to the semi-final so that there is no suggestion of competitive scheduling 🙂
The final is slightly different. For a start, it’s one of ten, rather than one of 25, and for another thing, finalists are given £10,000 and, equally importantly, lots of help and guidance in the following eight months to develop to a full prototype.  This money is desperately needed to help develop both AzuleJoe’s technologies and CommuniKate’s reach.  The development day Kate and I went to yesterday was fun and interesting – we chatted to Justin Tomlinson the new minister for disability, and we worked with lots of cool and interesting people to really nail down some of the ways to move forward.
It’s also the biggest grant that eQuality Time has ever received.  This means excellent things for eQuality Time.  Not only is it definitely going to be in operation come April 2016 (which, as you’ll remember, is almost twice as long as we expected it to be running when we started), but it’s got budget, and guidance and a clear vision going forward.
As always, there best part was meeting the very cool people there… This is me getting the opinion of Open Bionics on a 3d printing project that is completely separate to either of our projects but that should be part of the blog sometime soon…
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…and us having a really good chat about going forward with handy experts from Leonard Cheshire Disability (I know it looks like we were the only people having fun, I think that is just a trick of the photo, I’m assuming everybody else was having fun too… )
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Can our understanding of autism help improve treatment for eating disorders?

Viv does XPRO Fujichrome (tungsten) T64

By habit, when I lack a good illustration for a post, or when it’s a particularly sad post I pick a open-licenced photo from flickr.

 

Christine is one of our regular writers – she focuses on topics related to eating disorders.

Obsessive behaviour. A need for systematising the unstructured. Difficulty processing emotions. Resistance to change. The formation of detailed routines to help make sense of the world. Wholly inflexible practices which appear out of the ordinary to most people. Over-sensitivity to sound and touch, and an out of proportion reaction to any extremes in sensory stimulants. Lacking perspective and a mental filter. A tendency to focus on minutiae and detail. This is a list of symptoms characteristic of those suffering with eating disorders.

The similarity to descriptions of diagnoses on the Autism Spectrum is clear. Eating disorders are not always about a fear of gaining weight, but instead about control and processing. Individuals have difficulties surrounding what may be considered to be ‘normal’ social and physical functions, such as eating a balanced diet with ease in their surroundings. Food consumption is dependent upon environment and sensory variables, and extreme levels of distress when these rules are not adhered to seems to be a common trait between both populations. This might manifest itself as only eating certain textures, limiting the diet to a small number of foods, or eating in a certain room with particular cutlery.

Various studies suggest that the two do not just present in a similar way but may in fact be linked, particularly with the subset of anorexia. One study from Cambridge University and Cambridgeshire and Peterborough NHS Foundation Trust found that the teenagers scored higher for traits of autistic spectrum disorder (ASD) compared with a large group of similarly aged adolescent girls without anorexia. A study by eminent eating disorder researcher Dr Janet Treasure and colleagues at King’s College, London amongst adult outpatients at an eating disorder unit found that the cognitive profile between those on the ASD and those diagnosed with eating disorders to be similar, and believe that this has implications for treatment, in terms of therapies to help shift mental schemas, and for the physiological, where shared endophenotypes may be affected during refeeding and weight restoration. Sobanski reports that 27% of girls with ASD also report symptoms that fall within the eating disorders realm, and males with ASD are also are increase risk for low body weight and abnormal eating practices, and Gillberg and Råstam found that the comorbidity of anorexia nervosa and Asperger’s syndrome) was as high as 12 per cent in their patients, and concluded that anorexia should be included on the ASD.

It is not that autism causes eating disorders, or vice versa. In fact, neither predicates the other, as both come from the same neurological functioning. The levels of co-morbidity for both conditions is high – and this is completely logical. The brain’s wiring will not only affect one aspect of life, such as eating, or learning, but influence all areas and thus be manifested in multiple ways, which, dependent upon which behaviour is most obviously presented, could result in a number of diagnoses. It also may help explain why more boys are diagnosed with autism than girls are, if anorexia is one way that autism more commonly presents itself in girls. It also demonstrates how the root cause of an illness could be the place to understand, rather than focusing purely on the physical presentation. Individuals may be demonstrating behaviours that fall into the DSG-IV criteria for anorexia diagnosis, but not yet have lost the pre requisite 15% of their body weight to be classified.

If the two are linked, this is not a reason to explain away either anorexia or autism. Neither are the result of poor upbringing, societal influences or bad behaviour, but distinctive brain functioning. A deficit in right brain functioning, oxytocin processing impairments, variations in the interior cingulate cortex and restricted cognitive inhibition are seen in individuals with anorexia and those with autism. Symptoms of anorexia are consistent with symptoms in conditions found in neurodevelopmental disorders and so lessons can be learned from the treatment of such conditions.

Instead, it can open up new options for treatment, shifting focus away from weight and food to working with individuals to aid them in processing emotions and communicating their needs. Cognitive processing therapy and non-pharmacological treatment could be of immense benefit, and strategies centring on social skills and psychological flexibility change the long term outcome for recovery.

Rather than concentrating on classifying certain illnesses or disorders, making divisions between people based upon behavioural and physiological criteria, medicine and psychology could do well to look at the similarities, which may help to encourage a more holistic and recovery focused approach where long term changes are sought instead of short term eradication of symptoms.

 

Fail post: Supertitle Funding

Accident!
I’m very keen to run eQuality Time as an absolutely transparent organisation, and this includes the failures as well as the successes.

So I’ve the last few months I’ve been talking a little about the Supertitle project,  We introduced the concept, then we talked a little bit about the prototype.  I’ve also been trying to get a little bit of funding to develop the project
Our first funding application was to Unltd, which actually funded some early development on Project TooManyCooks.
Unfortunately they recently came back to us with a rejection.  I’m surprisingly upbeat about funding rejections – it’s data at the very least and it generally helps to know where you went wrong.  It also means that I’m at least reaching for things that are difficult.  I’m a big believer that if everything is going well, you probably aren’t ambitious enough.
If you’d like to read my unsuccessful bid for funding, you can find it here: SuperTitleUnltd.doc. (I’ve redacted some of my details and those of my references).  As with all funding proposals, it’s slightly different from the more broad goals that I normally talk about. It’s very concentrated on a small-scale proof-of-concept event.  Looking at it now there is a lot I’d change about it, which is always a good thing 🙂