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The World Dementia Council will be much stronger from democratic representation from leaders living with dementia
There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself. You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.
“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.
Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.
I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.
Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.
I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.
I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).
I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.
Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.
My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.
Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.
I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.
I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.
I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.
The article by Rachel Reeves MP is a 'two fingers' at disabled citizens, and will lose Miliband the election
It is actually massively upsetting.
For many citizens, hardworking or not, Ed Miliband was finally beginning to show ‘green shoots’ in his leadership. His conference speech in Brighton was professionally executed, and it largely made sense given what we know about his general approach to the markets and State.
Amazing then it took fewer than a few weeks for his reshuffle to ruin all that.
Parking aside how Tristram Hunt MP had changed his mind about ‘free schools’ such that they were no longer for ‘yummy mummies’ in West London, Rachel Reeves MP decided to come out as a macho on welfare. She boasted on Twitter that she was both ‘tough and fair on social security’.
Rachel Reeves’ article was immediately received by a torrent of abuse, and virtually all of it was well reasoned and fair.
Yes, that’s right. In one foul swoop, we managed to conflate at one the ‘benefit scroungers’ rhetoric with an onslaught on ‘social security’.
Being ‘tough and fair’ on the “disability living allowance”, in the process of becoming the ‘personal independence payment’ is of course an abhorrent concept. I only managed to be awarded my DLA after a gap of one year, after it had been taken away by this Government without them telling me. At first, it was refused through a pen-and-paper exercise from the DWP. Then, it was successfully restored after I turned up in person at a tribunal in Gray’s Inn Road.
This living allowance meets my mobility needs. My walking is much impaired, following my two months in a coma. It also meets my living requirements, allowing me to lead an independent life.
I don’t want to hear Reeves talking like a banker but as if she doesn’t give a flying fig about real people in the real world.
For once, the outrage on Twitter, and the concomitant mobbing, was entirely justified. I had to look up again what her precise rôle was – yes it was the shadow secretary for work and pensions, not employment.
Many members of Labour were sickened. A spattering of people, would-be Councillors in the large part unfortunately, didn’t see what the fuss was about. They reconciled that ‘the sooner we face up to this problem, the better’.
The media played it as ‘the hard left of the Labour Party are upset’.
The “Conservative Home” website played it as a sign that the Labour Party were belatedly adopting the Conservatives’ narrative, but it was too little and too late.
Like Ed Miliband being booed at conference, a backlash against Reeves’ article can euphemistically be indicative of Labour’s success at ‘sounding tough’.
At yet, this is ‘short term’ politics from a national political party. The social value of this policy by Labour is not sustainable. In the quest for instant profit for headlines, it will actually find itself with no income stream in the long term.
For all the analysis with Labour marketing must have done through their ‘think tanks’ and ‘focus groups’, it is striking how Labour have missed one fundamental point. That disabled bashing in the media is not populism from the Left, actually.
Conversely, it could LOSE them votes from their core membership.
If they learn to love disabled people, they could WIN votes.
Simples.
So what’s the fuss about? She didn’t mention disability. Well – precisely. Disabled citizens of working age are known to form a large part of the population, as Scope reminded us this week in their session on ‘whole person care’ with Liz Kendall MP, so why did Reeves ignore them altogether?
Is it because she has only been in a brief only a few days? Some of us in life have taken the bullet for incidents in life which have lasted barely a few minutes.
What will it take for Labour to ‘get it’ on disability and welfare? Possibly, the final denouement will be when Labour finally realises it can’t ‘out Tory’ the Tories.
The Twitter defenders of the indefensible cite that ATOS are being ‘sacked’ – well, yippedeeeday. ATOS, who were appointed by Labour, are finally being sacked. When negotiating a contract in English law, the usual procedure is to ensure that there are feedback mechanisms in place to ensure the contract is being performed adequately? You can bet your bottom dollar that Labour wishes to do a ‘Pontius Pilate’ on that, like it does on all its crippling PFI contracts it set up for the NHS.
This is a disastrous start by Reeves, but ‘things can only get better’. It’s not so much that Rachel Reeves is Liam Byrne in a frock that hurts. It’s the issue that shooting the messenger won’t be the final solution in changing Labour’s mindset on this.
It is all too easy to blame the ‘subeditor’, but the subeditor didn’t write the whole piece. Any positive meme from Reeves, in a ‘well crafted speech’ to “out-Tory the Tories” (such as scrapping the ‘Bedroom Tax’), has been instantaneously toxified by the idea of people ‘lingering on benefits’.
The most positive thing to do was to explain how people might not be so reliant on benefits, such as work credits, if we had a strong economy.
Reeves chose not even to mention pensions, which is a large part of her budget.
Because the article was hopeless from the outset, it could not even get as far as how to get the long-term unemployed (or the long-term sick) safely back to work.
It was an epic fail.
It is, in fact, an epic fail on all three planks of Ed Miliband’s personal mission of ‘One Nation': the economy, not recognising the value of disabled citizens of working age to the economy; society, not recognising disabled citizens as valued members of society; and the political process, totally disenfranchising disabled citizens from being included in society.
It is no small thing to wish the Labour Party to fail as well as a result. But this may now be necessary, and Reeves should take the bullet for that if she doesn’t improve.
Is the attack on the disabled necessary and proportionate? The response should be a legal one.
Most of us know by now that welfare benefits is out-of-scope in #LASPO. This concomitant loss of funding for legal aid work may mean that CABx and legal centres shutting in the context of a problematic finding. This is particularly ludicrous given that as many as a third of people claiming incapacity benefits who are declared fit-for-work later may go on to win appeals against the decision.
Nikki Neufeld, of the Pembrokeshire Citizens Advice Bureau, said that nationally, in new Employment and Support Allowance claims that 41% of all fit for work decisions have been appealed against and, of the appeals heard between December 2010 and November 2011, 32% were successful.
The Disability Living Allowance (DLA) is being replaced by the Personal Independence Payment (Pip) next year. Approximately two million DLA claimants are to be reassessed as part of the change—and as many as 500,000 will be denied the new benefit. The Coalition Government hopes to cut at least 20 percent, almost £2.2 billion annually, off the bill.
There is now an overwhelming case file of perplexing examples of decisions made lawfully. For example, Paul Mickleburgh, 53, has undergone a series of operations over the past 33 years, including four failed transplants, and has suffered 14 heart attacks. The father-of-three says he is the victim of changes which involve transferring tens of thousands of Scots claimants off incapacity benefit or severe disablement allowance and on to the new Employment and Support Allowance (ESA). He criticised the Government after being told to attend work-focused interviews and actively look for employment or face a cut in benefits.
In September 2010, Jan Morgan had a brain haemorrhage, which caused a severe stroke that left her cognitively and visually impaired, doubly incontinent and totally paralysed on her left side (in her own words). The prognosis was that she would need 24/7 care for the rest of my life. She was 50 and her youngest child was aged just 12 years. Astonishingly she “was politely informed that [her] benefit had been stopped as [her] medical certificate had expired.” Also, an online petition has been raising the awareness of cutting of benefits opposing plans by the Department for Work and Pensions, which could lead to the blind and partially-sighted being denied existing benefits. One recipient said, “I have more than 36,000 signatures, which have come from disabled people and those from all walks of life. They include the chief executives of large organisations, to those who just care about welfare reforms being totally unjust.” Indeed, a CWMCARN man who was declared fit to work despite being registered blind and suffering from rheumatoid arthritis is appealing against the decision.
Even veterans are not safe, it seems. Officials have estimated that a total of 500,000 people will lose disability benefits under Mr Duncan Smith’s plan for a “more focussed” allowance called the Personal Independence Payment available only to those in “genuine need” of support. In a formal submission to the Department of Work and Pensions’ consultation on the reforms, the Royal British Legion apparently has warned that the criteria that could be applied to the new benefit could hit limbless ex-Servicemen especially hard.
The social media have been a Godsend for many disabled citizens. Sue Marsh has been relentlessly raising awareness of the issues she has been facing on her ‘Diary of a Benefit Scrounger’ blog, and Kaliya Franklin was recently nominated for the shortlist of the Orwell Prize 2012 for her blog “Benefit Scrounging Scum”. The impact of the Coalition, felt by many disabled citizens, is now finally being recognised in the wider media. For example, Jess Thom writes:
“Disabled people are right to feel like the hardest hit by the coalition’s relentless cuts. On the national level there’s the planned abolition of disability living allowance – a move designed to make 500,000 disabled people ineligible for basic support – or the health bill, which will privatise the NHS by the back door and make it harder for disabled people to access the services they need. And the brutal cuts continue at a local level affecting countless crucial frontline services.”
Any law in the UK has to be proportionate, and there is a European legal doctrine of proportionality which oversees this. The concerns about the disability benefit legislation, as regards human rights, are well documented (see for example a previous article on this blog). The European doctrine of proportionality means that, ‘an official measure must not have any greater effect on private interests than is necessary for the attainment of its objective’:Konninlijke Scholton-Honig v Hoofproduktchap voor Akkerbouwprodukten [1978] ECR 1991, 2003.
Proportionality is probably not a ground for review separate from judicial review, but when a decision is challenged by judicial review the new approach required under the HRA was described by Lord Steyn in R (Daly) v The Secretary of State for the Home Department [2001] 2 AC 532, paragraphs 25 – 28. Exactly how the courts should approach issues of proportionality was discussed by Lord Steyn in the case of R (Daly) v SSHD [2001] 2 WLR 1622, in which he said at paragraph 27:
The contours of the principle of proportionality are familiar. In de Freitas v Permanent Secretary of Ministry of Agriculture, Fisheries, Lands and Housing [1999] 1 AC 69 the Privy Council adopted a three stage test. Lord Clyde observed, at p 80, that in determining whether a limitation (by an act, rule or decision) is arbitrary or excessive the court should ask itself:
“whether: (i) the legislative objective is sufficiently important to justify limiting a fundamental right; (ii) the measures designed to meet the legislative objective are rationally connected to it; and (iii) the means used to impair the right or freedom are no more than is necessary to accomplish the objective.”
The response to the attack on the disabled should not just be a moral one, then. The response should be a legal one.
