Ministers could merge disability benefits and want to cut future spending, says green paper
Ministers are considering measures to cut rising spending on disability benefits, and the possibility of merging personal independence payment with universal credit, a new government green paper has revealed.
The health and disability green paper, Shaping Future Support, focuses on reforming personal independence payment (PIP), employment and support allowance (ESA) and the disability-related aspects of universal credit.
It was published just as MPs were about to start their long summer recess.
For much of the Department for Work and Pensions (DWP) document, ministers detail the progress they say they are making to improve the assessment processes for disability benefits, and they ask for suggestions for how to improve the system in the short-term.
It is only in the final chapter of the report that they begin to hint strongly at the need to cut projected spending on disability benefits.
They say that rising spending on disability benefits “suggests there is more we can do to enable independent living and employment” and that they want to “explore making bigger changes to the benefits system” that will mean the system is “more affordable in the future”.
In a section titled Why Further Change is Needed, they point to the increasing numbers of claimants who are assessed as having limited capability for work and work-related activity (LCWRA) under universal credit (UC), or who are placed in the ESA support group.
A forecast in 2012 suggested 15 per cent of all those eligible for ESA would be placed in the support group, says the green paper, whereas current figures for ESA and the LCWRA group of UC show this is now nearer 75 per cent.
And the green paper claims that spending on PIP and ESA (and its earlier and later equivalent benefits) has risen in real terms from about £8 billion in 1980-81 to £31 billion in 2020-21, and is forecast to reach £40 billion within five years.
It also suggests that ministers could create a “new single benefit” so as to simplify the application and assessment process, presumably by merging PIP – which is supposed to contribute towards the extra costs of disability – with the income-related universal credit, although it does not say how this could be done.
This new benefit, it says, could put more focus on supporting people with their extra costs, or alternatively place more of an emphasis on helping people to find and stay in work.
It then offers case studies of four countries – Australia, France, New Zealand and Switzerland – that approach disability benefits in a different way to the UK.
It is likely to concern disabled activists and claimants that three of the countries chosen by ministers appear to provide a less generous system, or at least offer less control to disabled claimants over their support.
In Switzerland, for example, there is a “helplessness allowance” designed to contribute towards extra costs, but it is awarded “only in exceptional circumstances”, while in New Zealand the equivalent to PIP is means-tested and reaches a maximum of only £34 a week, and in Australia disabled people must provide receipts to prove they have spent their funding on goods, services and other support related to their disability-related needs.
There are other hints that ministers want to reduce the number of disabled people who claim out-of-work benefits, with the green paper suggesting that it wants to provide better support for those who are found no longer eligible for LCWRA and to “explore whether there are better ways to target financial support at people with the highest needs so that people do not feel discouraged from trying out work”.
Another warning is that ministers want to “consider” whether any changes should be made to the WCA or PIP assessment criteria, as “some of the activities referred to may have become less of a barrier to independent living and employment”.
It also says that the COVID-19 pandemic “has resulted in more people working flexibly, including working from home”, which “may mean that barriers to work have reduced”.
There is no mention of any of these ideas or the need to address spending increases in the press release published alongside the green paper.
There will now be a 12-week consultation on the green paper, which will include a series of events across England, Scotland and Wales.
The green paper, which will be followed next year with a white paper offering “detailed proposals”, focuses on support for working-age disabled people, and applies only to Great Britain, although some aspects only apply to England, and some just to England and Wales.
There is also no mention in the 46,000-word document of any of the deaths of disabled claimants that have been linked to DWP’s actions and failings.
Instead, the green paper refers to some claimants who “may feel afraid of having to use the benefits system”, to claimants who “sometimes struggle to apply for benefits and can find health assessments difficult”, and to how “a sizeable minority of people are not content” with the ESA and PIP systems.
There is therefore no mention of the findings of a coroner, who concluded in January that flaws in the PIP system were “the predominant factor and the only acute factor” that led to a young disabled mother, Philippa Day, taking her own life.
There is also no mention of the DWP safeguarding failures that led to the deaths of Roy Curtis, in November 2018, of Errol Graham, earlier the same year, and of Jodey Whiting, in February 2017.
And the green paper fails to mention the 97 internal reviews DWP has carried out into the deaths of claimants since July 2019.
In many of the sections of the green paper, the government provides no clear suggested policies, or offers only a set of vague principles, such as when suggesting advocacy for some claimants, and discussing how to meet disabled people’s mobility needs.
Much of the paper is taken up with describing changes DWP has already carried out, such as the easing of strict conditions and the use of sanctions for those on out-of-work disability benefits, or policies – like its new Access to Work “passport” – it is still working on.
For the moment, ministers say they have put aside the idea of a single assessment that would test eligibility for both PIP and ESA/universal credit, partly because they operate under different time frames and also because they assess “different ways in which people’s disabilities and health conditions affect them”.
But they say a single assessment could still be possible if they decide to make significant changes to the structure of the benefits in the longer-term, for example by introducing a new single benefit.
Testing a new “integrated health assessment service” is continuing, though.
This would bring the two assessments onto a single digital system, which DWP says would “make our processes more effective and efficient and improve people’s experience”.
And the green paper says DWP wants to make greater use of “triaging”, making early decisions on more “straightforward” claims so claimants only have to go through face-to-face assessments “if absolutely necessary”.
It also discusses its moves towards a more “holistic” approach to making decisions on claims, which allows staff “to take extra time, if needed, to make a decision on benefit entitlement following a health assessment”.
One proposal likely to secure support is to test a simplified application process for those disabled people who are not terminally ill, but who have “severe and lifelong conditions that will not improve”, are “unlikely ever to work again”, and will “always need extra financial support to live independently”.
Members of this new “severe disability group” would use a “simplified process without ever needing to complete a detailed application form or go through an assessment”.
Many parts of the green paper offer few suggestions for reform, such as the section on the much-criticised Disability Confident scheme, which focuses only on marketing and making it easier for employers to sign up, rather than addressing its highly-publicised flaws.
One of the first user-led organisations to comment on the green paper was the National Survivor User Network (NSUN).
Mary Sadid, NSUN’s policy officer, said: “Overall, the green paper reflects a deeply flawed logic that continues to run through government departments: employment as a route out of poverty and hardship.
“This is an employment and disability green paper, fixated on avoiding ‘health related inactivity’, that links worsening health outcomes for disabled people with unemployment, instead of recognising the impact of poverty.
“In 2020, 40-50 per cent of those receiving PIP/ESA had a primary condition related to mental health.
“This green paper fails to offer hope of breaking the cycle of poverty and struggling with your mental health.”
22 July 2021
Disability strategy delayed again as government consultation faces high court challenge
The government appears to have been forced to delay the publication of its controversial disability strategy, after four disabled people were granted permission to challenge the legality of its consultation process in the high court.
Publication of the strategy was originally planned for the spring, but as spring passed into summer government statements on its progress changed from saying it would be “published in the spring”, to promising that it would be published “soon”.
Disability organisations were then told last week to expect its publication within days.
But a sign of further delay came when the minister for disabled people, Justin Tomlinson, told an MP in a written answer that the strategy would be published “later this year”.
And with parliament beginning its long summer recess today (Thursday), the strategy has still not been published.
Tomlinson and the Department for Work and Pensions (DWP) appear to have focused instead on their new disability benefits green paper (see separate story).
The strategy was already long-overdue.
As far back as May 2018, Disability News Service (DNS) reported that DWP was refusing to say what had happened to its last disability strategy, Fulfilling Potential.
The initial stage of Fulfilling Potential was first launched in December 2011, but there have been no updates or progress reports on the government’s website since November 2015.
The new national disability strategy, and a survey that aimed to “gather views and experiences” to inform its development, have caused continuing controversy this year.
Some of the anger was over the decision to ask non-disabled people responding to the survey if they would be “happy to have a physical relationship with a disabled person”.
But the survey also led to a series of letters to ministers from disabled people’s organisations and allies, criticising it for being rushed, inaccessible, over-long and poorly-planned.
Four disabled people – including two leading campaigners – have now been granted permission to challenge the survey through a judicial review, with the high court deciding that it was “important in the public interest”.
They say that only limited information was provided about the strategy in the survey and that the way it was designed meant they could not respond in a “proper and effective” way.
They are also arguing that there was a failure to consult with disabled people’s organisations about the strategy.
They say that all but four of the questions in the survey – carried out by the government’s Disability Unit – were multiple choice.
Three of the other questions were limited to just 100 words, and the other one to 250 words.
It is believed that the high court’s decision to allow a judicial review is behind Tomlinson’s decision to postpone the publication of the cross-government strategy.
Doug Paulley, one of the four disabled people taking the legal case, told DNS the survey was “clearly flawed”.
He said: “Any strategy that is based, at least partly, on a totally flawed consultation would be likely to be incorrect and subject to challenge.
“I think [the survey] was utterly useless and pointless and pen-pushing at best, so the government would be pretty silly to publish their strategy.
“There has been very limited attempt to engage in any meaningful way with actual disabled people and their organisations.
“The consultation, I think, was contemptible.
“The whole thing wasn’t informed by disabled people’s concerns, wants or needs.”
The government is apparently arguing that the survey was not a consultation – even though the Disability Unit’s own website listed the survey at the time as an “Open Consultation” and it was hosted on the unit’s “Consultation Hub” – and that it was not obliged to consult disabled people about the strategy.
But Paulley said the entire process was just “thoroughly ridiculous”.
He said the government needed to relaunch the process with a proper consultation.
He said: “They need to speak to disabled people and disabled people’s organisations, and that needs to form some significant part of the intended strategy.
“You would have thought that that would have been the basics, but the government clearly didn’t.”
Miriam Binder, a member of the national steering group of Disabled People Against Cuts (DPAC) and another of the quartet taking the legal action, said DPAC’s main concern about the survey was that there was “no clear indication of what the strategy will be addressing”.
She said the survey had been “pretty much a tick box exercise” and provided “very little, if any, opportunity to describe what the various barriers actually were”.
She said the survey was also inaccessible to large groups of disabled people, including those who were not computer literate.
She said: “What we are hoping to achieve is firstly a recognition that we need a proper consultation prior to the disability strategy.
“We need to know what areas it will be seeking to address.
“And we need a clear commitment that it will allow us – that is, the DPOs such as DPAC as well as the various other DPOs – to get involved in informing the authors of the disability strategy.”
Shirin Marker, a solicitor at Bindmans, who is acting for the four claimants, said: “In granting permission, the court has understood the importance of this issue, which is of potentially huge significance to disabled people.
“We hope that the secretary of state will now recognise the sense in delaying publication of the strategy until after the court has ruled on whether an unlawful consultation has taken place, as any strategy predicated on unlawful consultation may itself be subject to challenge.”
A DWP spokesperson said the government would be publishing the strategy “shortly”.
22 July 2021
‘Human cyborg’ tells MPs: ‘My living experiment proves assisted suicide bill is unsafe’
A world-leading scientist, given just two years to live four years ago, has told parliamentarians that his success in harnessing cutting-edge technology to secure his own right to live – and even to “thrive” – completely undermines calls to legalise assisted suicide.
Dr Peter Scott-Morgan told a meeting of the all-party parliamentary group for dying well that his experiences since being diagnosed with motor neurone disease (MND) in 2017 showed why a new proposed bill was unfair and unsafe.
Last August, Scott-Morgan was the subject of a Channel 4 documentary which followed his quest to turn himself into a “human cyborg” and so not only stay alive, but thrive, despite an apparently terminal condition.
He spoke to the meeting through a cutting-edge avatar that has allowed him to regain many of the components of his voice and expression, even though he is now almost completely paralysed.
He told the meeting that the intentions of the assisted dying bill proposed by the crossbench peer Baroness Meacher – which is set to be debated in the House of Lords in September – appeared “so obviously reasonable, compassionate, humane” that he initially found himself “intuitively supporting” her proposals.
But as a scientist, he said, he is trained to question even the most obvious and fundamental assumptions.
And he told MPs and peers at the meeting that his own experiences disproved the “apparent self-evident truth” that it was impossible for someone with late-stage motor neurone disease to not only survive but to “thrive for many years” and even improve their quality of life.
He said this was “a crucial test” in weighing up whether the bill was fair and safe, and he added: “Everything would be called into question because of confusion about the likelihood, let alone inevitability, of intolerable suffering.”
Scott-Morgan said his own transition to “Peter 2.0” had shown that legalising assisted suicide could result in lives being shortened by more than just a few months, while it could lead to patients not being fully informed about their choices and may create “uncertainty between being terminal and simply being disabled”.
He said such a bill creates the “danger that some with extreme disability may unnecessarily kill themselves in an anticipation of what they incorrectly believe will inevitably happen”.
And he said the bill created the “ethical risk of protecting an individual’s human right to choose to die without putting the same effort, education and funding into their right to thrive”.
All of this, he said, would “unequivocally undermine the assumption that the choice was fair”.
He told the meeting through a recorded message: “I have late stage MND. In 2017, doctors agreed I might die within six months.
“Now I am almost completely paralysed, locked in. I am a prime candidate for the fast track to death. But I will pass on the offer. I am frankly far too busy having fun.”
He said his overall quality of life was now “exceptional”.
Scott-Morgan said he had seen his paralysis as “an engineering challenge far more than a medical one” and he described to the meeting how he had undergone a series of ground-breaking operations to cope with some of the challenges posed by his diagnosis.
First, he persuaded a team of surgeons to perform a pioneering triple procedure that saw them carry out a colostomy, instal a catheter, and insert a feeding tube in the same operation.
He then later underwent another operation to detach his windpipe from his throat, to eliminate the risk of catching pneumonia through saliva getting into his lungs, a common cause of death for people with MND.
This left him unable to speak, so he has worked with experts to clone his voice and expressions using artificial intelligence (AI) – the avatar he used to speak to the meeting will in time become even more realistic and expressive – and he now plans to use “more and more” AI for “everything from speaking to controlling things to moving about”.
Scott-Morgan was originally a world-renowned robotics and artificial intelligence expert, but he later expanded this to include expertise in sociology and management, and now describes himself as both a scientist and “a prototype”.
He was one of four disabled people (see separate story) who described to the meeting why they were opposed to the proposed new private members’ bill being proposed by Baroness Meacher, chair of the campaigning organisation Dignity in Dying, formerly known as the Voluntary Euthanasia Society.
Last year, Scott-Morgan launched The Scott-Morgan Foundation, which is dedicated to using high-tech tools to allow disabled people to “thrive with extreme disability”, through a “hugely ambitious research programme” that will last decades and has attracted “some of the world’s top brains”.
He says on his website that having now analysed the “unwritten rules of clinical care” for motor neurone disease, he plans to thrive for decades, and “is adamant that the lessons learned must help everybody” with such high support needs.
22 July 2021
Disabled quartet tell MPs and peers why assisted suicide bill is unsafe and unsound
Four leading disabled campaigners – a scientist, an academic, a consultant and a peer – have explained to parliamentarians why proposals to legalise assisted suicide would put disabled people’s lives at risk.
All four told a meeting of the all-party parliamentary group for dying well that the assisted dying bill – which is set to be debated in the House of Lords this autumn – would not be safe.
The private members’ bill would legalise assisted suicide in England and Wales for some people who are terminally-ill, and it is being proposed by the crossbench peer Baroness Meacher, a former social worker and now chair of the campaigning organisation Dignity in Dying, formerly known as the Voluntary Euthanasia Society.
But researcher Dr Miro Griffiths; world-renowned robotics expert Dr Peter Scott-Morgan; crossbench peer Baroness [Jane] Campbell; and campaigner Phil Friend, all explained to the meeting why the bill would put the lives of disabled people at risk.
Griffiths, a research fellow in disability studies at the University of Leeds, and a member of the equality watchdog’s disability advisory committee, said it was “not a safe time” to be introducing the bill, both because of the “historical legacy of injustice experienced by disabled people” but also because the pandemic had exacerbated the marginalisation they face.
He said the COVID-19 crisis had led many disabled people to feel lonely and that they were a “burden” on others.
Griffiths, who is also an adviser to the Department of Health and Social Care, said: “I think [the bill] is introduced at a dreadful and dangerous time.”
He said the experience of states and countries where assisted suicide has been legalised, including the US state of Oregon, showed health professionals offering the option “as a way to relieve the burden on families and individuals”.
He said countries that had opted for legalisation had seen steadily increasing numbers of people choosing an assisted suicide, with campaigners constantly pushing for the eligible groups to be expanded.
He also said the Royal College of Psychiatrists in the UK had shown how difficult it would be to determine if someone was being coerced into opting for an assisted suicide.
Scott-Morgan (see separate story) told the meeting the bill appeared “so obviously reasonable, compassionate, humane” that he initially found himself “intuitively supporting” the proposals.
But as a scientist, he said, he is trained to question even the most obvious and fundamental assumptions.
And he said that his own experiences disproved the “apparent self-evident truth” that it was not possible for someone with late-stage motor neurone disease not only to survive but to “thrive for many years” and even improve their quality of life.
He said this was “a crucial test” in weighing up whether the bill was fair and safe.
Last autumn, he was the subject of a Channel 4 documentary which followed his quest to turn himself into a “human cyborg” and so not only stay alive, but to thrive, despite his diagnosis with an apparently terminal condition.
He said the bill risked “protecting an individual’s human right to choose to die without putting the same effort, education and funding into their right to thrive”.
Baroness Campbell, the founder of Not Dead Yet UK (NDY UK), the leading organisation of disabled people campaigning against legalisation in the UK, and a member of the all-party group, said that 12 disability organisations had already signed up to NDY UK’s campaign against the bill, with more expected to follow.
She added: “There are no organisations in this country, of or for disabled and terminally-ill people, who actively campaign for the law on assisted suicide to be changed.
“Doesn’t that tell you something?”
Friend, one of the country’s leading disability consultants before his retirement last year, co-convenor of NDY UK, and still a significant public voice through his regular podcasts, said the Meacher bill, if it became law, would begin to place doubts in the minds of disabled people, and doctors themselves, about the role of the medical profession.
Friend, who contracted polio when he was three and spent much of his childhood in hospitals, said: “My most scary thought is that doctors are now going to be asked to consider ending life rather than saving it and that I think undermines the whole relationship that exists between the patient and the doctor.”
He also said that disabled activists had campaigned for decades – often through the social model of disability – to shift the public away from associating disabled people with words such as “suffering”, “pity”, “hopelessness” and “tragedy”.
And he said there was “no doubt in our mind that disabled people are still viewed pitifully and while that is the case, it’s very easy therefore to take a view that it would be easier for this individual to end their life”.
Friend said the safeguards in the bill were intended to protect disabled people from coercion by those who wanted them to die.
But he warned the meeting that “some families are not nice, some families do not treat their family members well, their disabled family members well”, with a 2015 Age UK report (PDF) finding that 50 per cent of financial abuse of older people in the UK was perpetrated by adult children.
He told the MPs and peers attending the meeting: “It’s our concern that you should not focus on personal choice or personal morality, but focus on public safety.
“What we want you to do is to help disabled people to thrive, not to die.
“If you can go through the voting lobby… and put your hand on your heart and be sure that there will be no unintentional deaths as a result of this legislation, please vote for it.
“But if you can’t, then don’t.”
22 July 2021
Disabled women tell government: ‘We know who you didn’t save during the pandemic’
Disabled women faced “death by discrimination” during the pandemic crisis because of the decisions taken by the UK government, protesters in Parliament Square were told this week.
Disabled activists from the Women’s Equality Party (WEP) chanted, “Who did they not save? Disabled women!” beneath a statue of the suffragist Millicent Fawcett on Tuesday, as they drew attention to the government’s failings during the pandemic.
The protest marked the end of a 91-hour action spread over the last three weeks, which highlighted research, first reported by Disability News Service (DNS), that showed how working-age disabled women with higher support needs were nearly twice as likely to die from COVID-19 than non-disabled women of the same age.
The research found that this group of disabled women were 91 per cent more likely to have died from COVID-19 than non-disabled women, even after allowing for factors such as underlying health conditions, and whether they lived in poverty, or in a care home.
The research was conducted by the Office for National Statistics and researchers at the London School of Hygiene and Tropical Medicine, but it has been almost completely ignored by the mainstream media.
Freya Papworth, co-chair of the party’s disability caucus, told the protest that the “shameful statistics” had “barely even touched the mainstream news”.
She said: “These statistics are as stark as they are because our government decided that the lives of disabled people… were not worth saving.
“Let’s call this what it is. Death by discrimination.”
A fellow disabled WEP activist, Dr Sarabajaya Kumar, told the protest: “When considering the question of that now-infamous [Downing Street] whiteboard of ‘who do we not save?’ people like me were clearly not considered worthy of saving.
“We would be collateral damage.”
She added: “If we were prioritised by government, the plan to support those of us who were shielding would not have been created as an afterthought in under 48 hours… but it was.
“If we were prioritised by government, very many people would not initially have been left off the vaccine priority list, despite being at far higher risk of hospitalisation and death from COVID-19… but they were.”
The Women’s Equality Party organised the three-week #91percent campaign – named after the 91 per cent figure produced by the research – to call on the government to order an urgent inquiry into the preventable loss of life of so many disabled people during the pandemic, and to ensure there were no further such deaths as the pandemic continued.
Kumar told DNS that she had been able to shield safely during the pandemic only because of the support of family, friends and neighbours, and because she had been able to work from home.
But she said many other disabled women who, like her, were clinically extremely vulnerable to the virus, had not been so lucky.
She told DNS: “An awful lot of people do not have friends and networks around them through no fault of their own. They are the ones who have likely died.”
The protest was held on Tuesday, the day after the UK government’s decision to lift most of England’s legal restrictions and social distancing measures came into effect.
Kumar said the government’s decision had made her “extremely anxious” and meant she was effectively going to have to return to shielding, on her GP’s advice.
Papworth told the protest: “It may be the day after ‘freedom day’, but for far too many of our members, coming here to protest in person is too dangerous.
“COVID has not affected everyone equally. In fact, it has proven to be the great revealer, laying bare the inequalities at the heart of our society.
“The legacy of over a decade of targeted cuts, and generations of overt discrimination against disabled people, especially disabled women and people of colour, have borne the brunt of the crisis.”
Another disabled WEP activist, Alison Smith, told DNS that the 91 per cent figure had been “horrifying” because it showed the disproportionate risk of death faced by disabled women, once underlying health conditions and socio-economic factors had been accounted for.
She said the government had done nothing to mitigate the extra risks now faced by those with higher support needs after “freedom day” but instead was just “putting the responsibility on those with higher care needs”.
She said this was a “gross dereliction of duty” and there needed to be an immediate public inquiry into why the government was failing to protect people who were clinically extremely vulnerable to the virus.
22 July 2021
Watchdog’s inquiry ‘will get to the heart’ of problems with social care policy
The equality and human rights watchdog has won praise for launching an inquiry that should get to “the heart of the inadequacy” of current social care policy.
The Equality and Human Rights Commission (EHRC) said this week that its inquiry would examine how individuals are able to challenge the decisions made about their entitlement to social care in England and Wales.
Disability News Service revealed in April that the commission was to hold an inquiry into whether the care and support system breaches equality and human rights laws.
But EHRC has now published the terms of reference for the inquiry, and launched a short survey.
It comes as the government appears to have delayed yet again its long-promised plans for social care reform, with no announcement now likely before MPs return from their long summer break in September.
There was a string of other government announcements, though, including the publication of a new strategy that ministers say will “speed up diagnosis and improve support and care for autistic people”.
The focus of the EHRC inquiry will include an examination of: people’s experiences of attempting to challenge decisions about their social care entitlement; whether people are provided with adequate information through the process; and the availability of advocacy support to challenge decisions.
It will also ask whether local authorities learn from successful challenges to their decisions to improve their future decision-making.
It aims to focus on evidence from the last three years, dating back to April 2018, and hopes to gather evidence from social care users, families, unpaid carers, local authorities and other individuals and organisations.
Although the inquiry may touch on issues relating to charging for social care, it will not look at “substantive” issues around charging, including the amount someone is charged or whether a person should be charged, or charging policies.
The commission said it had launched its new inquiry after disability and older people’s organisations “raised concerns that people faced barriers to complaining about or challenging decisions related to their social care”.
The inquiry will “look to see if these decisions can be meaningfully challenged if they fall short, and if the existing ways to do so are accessible and effective, including whether high quality advocacy support is available”.
Professor Peter Beresford, co-chair of the disabled people’s and service-user network Shaping Our Lives, said the commission had “got this absolutely right”.
He said: “The focus is going to be on how councils view ‘need’, what they tell service users about how they view ‘need’ and what they believe the Care Act requires them to view as ‘need’.
“The inquiry will therefore grapple with the eligibility/needs test which is at the heart of the inadequacy of current social care policy.
“The complaint process is a ‘pinch point’ with the potential to expose how councils operate.”
He said the inquiry would test if councils realise that they should be identifying disabled people’s “need” for social care without any reference to the availability of resources.
Beresford said: “If councils cannot afford to meet any [needs], they should be honest. But we know councils don’t do this – they identify only needs they have the resources for.
“The inquiry as it’s set out will expose this and for that reason is to be greatly welcomed.”
He said the inquiry would complement the commission’s paper, published in May, which stated that councils should identify unmet need and that the health and social care secretary should set out plans every two years to address this funding gap.
He added: “The commission could have expanded the inquiry to include complaints about charging, but then it would have diluted the focus and diverted attention away from the needs agenda.
“The means test is in plain sight and getting enough attention. The needs test is the silent killer of disabled people and this challenge is long overdue.”
Svetlana Kotova, director of campaigns and justice at Inclusion London, said: “This inquiry will look at and hopefully expose a hidden and very oppressive aspect of the current social care system.
“Despite all the rhetoric in the Care Act about respecting person’s wishes and feelings and starting with the assumption that people know their needs best, in reality important and often life-changing decisions are made by local authorities.
“Professionals decide what our needs are, how to meet them and what kind of support works best for us.
“Those disabled people who disagree and want to challenge have no affective avenues of redress.
“Complaints often take months and lead to nothing, especially when decisions are driven by budgetary considerations.
“This leaves many people frightened and powerless. It absolutely feels like care is done to us and we cannot do anything about it.
“The Care Act gave the government power to introduce appeals system, which the government failed to do.
“We hope this inquiry can push for action to create effective and independent avenues of redress so disabled people can effectively challenge decisions made by professionals which have a huge, often negative, impact on their day-to-day life.”
Linda Burnip, co-founder of Disabled People Against Cuts (DPAC), said DPAC welcomed the inquiry, although the failure to examine the care charging system “seems inadequate”.
She said: “There is no point in needs being properly assessed if people can’t afford to pay for it. The outcome that they don’t get the support they need remains in both cases.”
She added: “The lack of uprating of the minimum income guarantee since 2015 also deprives people of their right to lead an independent life, with the full level of support they need to take part fully in society in the same way that non-disabled people can.
“We know that many people can no longer afford to pay for their care or that others are forced to choose between paying for care over the costs of food or heating.”
EHRC’s chair, Baroness Falkner, said: “We know that the social care system has been under significant pressure and many problems have been exacerbated by the pandemic.
“With vital decisions about people’s care being made under such pressure, it is essential that there are effective ways to challenge them if people feel they have been left without the support they need.”
22 July 2021
Organisers of dementia conference hope it will remove their ‘cloak of invisibility’
Organisers of a conference that will be run by people with dementia say they hope it will help to remove the “cloak of invisibility” that comes with having an invisible impairment.
All the speakers at the 100/6000 Dementia Activism Conference in September will be people with dementia or other cognitive impairments.
The organisers hope that 100 people living with dementia will be at the conference to address issues around human rights, peer support, and the future of care and support.
The conference is being led by Deepness Dementia Media, which was co-founded by Ron Coleman, and is being supported by the Life Chances Trust charity.
It was Coleman, who has dementia, who came up with the idea for the conference and the phrase: “Take 100 people with dementia and you have 6,000 years of experience.”
Howard Gordon, another disabled activist with dementia, who is helping organise the conference and is a director of Deepness Dementia Media and one of the presenters on its Deepness Dementia Radio, said: “It will show that people with dementia can organise and attend an event that is for them and about them and about contributing to policy and thinking about how people with dementia should be treated.”
He told Disability News Service that the conference on 14 and 15 September in Dundee would “turn the media images of the incapable 90-year-old on its head, moving the focus from a ‘cure’ to what is needed now, today, not in the future”.
Attendance at the conference, either in person, or online, is free to people in Scotland with lived experience of dementia, and there will be just 10 paid places available for professionals to attend.
Gordon stressed that those professionals would be there as observers and would not be allowed to speak in the conference sessions.
He said: “The conference turns the tables on other conferences, removing the cloak of invisibility that an invisible disability brings, where our voices will be heard, not lost, spoken over or there just to validate someone else’s conference.
“It is the beginning of people living with dementia taking control of their own lives through things such as their rights under international law, a fair and inclusive national care service and an end to adversarial and discriminatory practices.
“We want to show we are part of the solution, not the problem, and that we have a right to a seat at the table for anything that involves us.”
He added: “I hope that the conference will encourage people living with dementia and other disabilities to stand up for their rights under international law and for their unmet needs and help ensure that our collective voices of the lived experience can no longer be ignored, as they have been for too long.”
22 July 2021
News provided by John Pring at www.disabilitynewsservice.com
