Disability minister says addressing DWP’s legacy of distrust and distress ‘is a big priority’
The new minister for disabled people has said it is a “big priority” for her to address the legacy of distress and distrust created by a decade of deaths of benefit claimants that have been linked to the actions of her new department.
Chloe Smith made the comments about the Department for Work and Pensions (DWP) after being asked by Disability News Service (DNS) how comfortable she felt stepping into a department that has been closely connected – including through reports from coroners and DWP’s own secret internal reviews – with so many deaths.
Scores of deaths have been linked to DWP’s systemic failings, including its refusal to act on reports by coroners following inquests in 2010 and 2014, and a report in March 2014 by the Mental Welfare Commission for Scotland, while more than 200 secret reviews have been carried out into the deaths of claimants over the last decade.
DNS told Smith this week that these deaths have left “a legacy of distress and distrust”.
In response, Smith told the fringe meeting at the Conservative party’s annual conference in Manchester: “We must be able to help people to have confidence in, in this case the DWP, but indeed other parts of public services as well.
“That is a fundamental, so we have to address these things and it is a big priority for me to do so.”
It is probably the closest any DWP minister has come to an apology for the department’s widespread failings over the last decade.
Smith added: “I can assure you that those things are something I am looking at very, very closely and there is much to do to help people to have confidence that the processes that are necessary are running as they ought to, and that there is a set of positive things that the government seeks to do for people who have ill-health or who face disability.”
After the meeting, she approached DNS to ask for the question to be repeated, and said she would then “think if there is anything further I can add to it”.
After repeating the question, DNS editor John Pring explained that he had interviewed many families of claimants who had died over the last decade and he told her that if he was going to take a job within DWP he would feel “deeply, deeply uncomfortable”.
But after hearing the question again, Smith said it was “good to know that you’re interested in that” but for “the time being” she would “leave it there”.
Her comments came as the mother of a disabled woman who took her own life after her benefits were wrongly stopped said she would seek permission to appeal against a court’s ruling that there should not be a second inquest into the death of her daughter (see separate story).
Joy Dove said she refused to accept that the first inquest in May 2017 – which lasted just 37 minutes – was a “thorough investigation” into the role played by DWP in the death of her daughter, Jodey Whiting.
She said: “I believe that there should be a proper and full look at the way that she was let down by the DWP and that the public need to know what went wrong there.”
The new minister had also been asked in the meeting – organised by the Conservative Disability Group – how much of a priority it was for her to push for the closure of assessment and treatment units (ATUs).
This follows years of scandals involving abuse and restraint of autistic people and people with learning difficulties in ATUs, including the recent deaths of three adults with learning difficulties at Cawston Park in Norfolk.
Smith said that the new care minister, Gillian Keegan, was “closely committed to being able to resolve that position”.
She said: “It has been going on a very long time, and they need close attention and I think they are getting it.”
She also told the meeting that, since her appointment as the new minister for disabled people, she had had all the commitments made in the government’s new National Disability Strategy “written out in large print on my office wall so that they can be seen and so that we can pursue them very vigorously”.
The strategy was criticised for pledging less than £4 million in new funding to accompany its commitments, an equivalent of just 28p of new funding for every disabled person in the UK.
7 October 2021
Disabled man forced to turn fridge off for 90 minutes at a time as UC cut looms
A disabled man has described how he is turning his fridge off for 90 minutes at a time to try to save on his electricity bill, as he prepares for his universal credit to be cut by £20 a week this month.
John Owen, from Eccles, was one of thousands of activists who took part in Sunday’s Protest the Tory Party Conference demonstration in Manchester.
The march, organised by The People’s Assembly Against Austerity, passed within a few yards of the Conservative party’s annual conference in central Manchester.
Each of the disabled campaigners Disability News Service (DNS) spoke to on the protest said they were there, at least partly, because of the government’s decision to end the £20-a-week increase to universal credit, introduced at the start of the pandemic.
Owen told DNS that he was already taking drastic action to keep his electricity bill down as he prepares to lose his £20-a-week.
He said: “I turn the fridge off for an hour-and-a-half just to keep the electric down. That’s how I have got to live.”
For the last couple of weeks, he has also been restricting himself to watching television for just 90 minutes every evening, and keeping lights switched off.
He said: “I am just sitting in my room for the rest of the day, staring at the four walls.
“That’s how I am living now.”
Debbie Jackson, from Accrington, was another protesting at the £20-a-week cut, although she did not receive the uplift herself as she receives one of the so-called legacy benefits.
She is clinically extremely vulnerable to COVID-19 but decided to take part in the protest even though she knew she was putting her life at risk by mingling with so many other people.
She told DNS: “I am willing to put myself at risk because someone needs to let them know they are not welcome any more.
“I will be in bed for a week after this, but it’s worth it.”
Mike Kelly, from Salford, said he believed the Conservative government was “trying to rip the country apart” and was showing “no compassion, no empathy” by removing £20-a-week from people who are “barely scraping by now”.
His utility company has already told him that his monthly direct debit will need to rise by £21 a month because of rising fuel prices.
Kelly said he believed that many people will soon have to choose between eating and heating.
Another disabled protester, JoAnn Taylor, from Salford, said she was taking part in the march because of “the horrendous impact of the cuts”.
She is another who did not receive the £20 uplift because she was claiming a legacy benefit, in her case employment and support allowance (ESA).
She is hoping that next month’s high court case – in which two disabled campaigners are challenging the failure of the Department for Work and Pensions to offer recipients of legacy benefits the same £20 increase given to those on universal credit over the last 18 months – will “bring justice to people like myself”.
Jennifer Jones, from Disabled People Against Cuts Sheffield, told protesters at the start of the march: “We all know about the awful, dreadful, hideous cut that is about to be put upon all universal credit claimants, so we need every single one of you, whether you’re a claimant or not, to show your solidarity with people who are about to lose £80 a month.
“The majority of people who are on universal credit are people who are in work, low-paid work, the other people are looking for work or are unable to.
“However, we need to also remember ESA, JSA [jobseeker’s allowance] and income support claimants, because people who have not been put onto universal credit yet, people who are on the old-style benefits, never received that extra £20-a-week.
“They went through the whole of the pandemic with no additional support whatsoever. For shame!
“And that is just one example, isn’t it, of the many, many ways that this government has let people down.”
Asked about the imminent cut to universal credit, work and pensions secretary Therese Coffey told a fringe event at the party conference later that day that the universal credit uplift was “always designed to be temporary”.
She mentioned the £500 million Household Support Fund announced last week – which has been criticised for providing less than 10 per cent of the funding that will be lost through the end of the uplift – and said she was “particularly conscious of some of the spikes that it feels are about to happen, particularly on energy bills”.
Coffey said she was “conscious that that’s something that we will try and make sure reaches the people who are really struggling” and that “we know these are really challenging times”.
But she said that the government’s “direction of travel” was “about continuing to invest in people to get back into work and to get on in work… to try to help people become more prosperous”.
7 October 2021
Conservative conference: Coffey says merging PIP with universal credit is ‘on the table’
The possibility of merging personal independence payment (PIP) with universal credit is “on the table” as part of a fresh wave of social security reforms, work and pensions secretary Therese Coffey has admitted.
In response to a question from Disability News Service (DNS) at the Conservative party conference in Manchester, Coffey twice refused to rule out the possibility of bringing the two benefits together.
DNS had asked her about suggestions of a merger between means-tested universal credit and non-means-tested PIP, raised in July’s disability benefits green paper.
Responding to the question, she initially spoke about a pilot project on productivity in work, but then conceded that “everything is on the table is the best way of saying it, because the green paper is quite broad and we want to get some focus on genuine innovative thinking”.
She added: “Are these benefits actually working? That’s the question I often say past my officials.
“Are they having the intended desire? And if not, what are we going to do about that?
“Or is there something that we can have [that is] better… in that regard.”
Asked again by DNS if she could confirm that she was not ruling out folding PIP into the universal credit system, she declined to do so.
She said instead that the reforms were about “the broader outcome of… improving processes, but also how we encourage and reduce the disability employment gap”.
PIP is paid to disabled people both in and out of work, is not means-tested, and is supposed to contribute towards the extra impairment-related costs they face.
The fringe event was hosted by The Centre for Policy Studies, the right-wing thinktank co-founded by Margaret Thatcher.
Coffey also made repeated references during the event to the need to cut spending on disability benefits, particularly PIP, which again was discussed in the green paper.
She said that “probably” the biggest increase in benefits spending had been on “health benefits”, while PIP had “grown in a way that was not anticipated when it was introduced”.
She said that three out of four young people who claim PIP – a total of 189,000 – state that their primary reason is their mental health.
Coffey appeared to suggest that reducing the number of young people in mental distress claiming PIP would help more people “think of the benefit system as fair”.
She said that targeting PIP on “people who really need that support” may improve the “public perception” that the system is fair.
But James Kirkup, director of the Social Market Foundation thinktank, and former political editor of the Daily Telegraph, blamed the media and its use of words such as “feckless, idle, workshy” to describe benefit claimants, as well as the rhetoric of an “earlier generation of politicians”, such as George Osborne.
He said: “There has been a problem with the way we all collectively, media and politicians, talk about welfare.”
7 October 2021
Conservative conference: Coffey signals new bid to push support group towards work
Work and pensions secretary Therese Coffey has strongly signalled that her department will launch a new bid to try to push more disabled people with high support needs into work.
Coffey, speaking at a fringe event at the Conservative party conference in Manchester, said she wanted to focus on those people who were currently seen as not being able to do any work.
She said she saw this approach as “a positive, an escalator, trying to help people”, which would leave the out-of-work disability benefits system as “a welfare net rather than a welfare trap”.
She referred during the event to the need to cut spending on disability benefits, particularly personal independence payment (see separate story).
Pushing people with high support needs towards work and the need to cut spending on disability benefits were themes hinted at strongly in July’s disability benefits green paper.
The focus on those currently in the support group of employment and support allowance (ESA) – and its universal credit equivalent – appears to be a return towards the controversial reforms suggested five years ago in the Improving Lives green paper, which caused shock and anger among disabled campaigners.
That green paper suggested that all ESA claimants with the highest support needs – those in the support group – could be told to stay in regular touch with their local jobcentre, or risk having their benefits sanctioned.
A year later, the government backed down and said that it was now trialling a voluntary approach.
Coffey said this week that she wanted to focus more on “what people can do rather than the benefit system being driven currently by what you cannot do”.
She appears not to realise – or to be hoping that disabled people will not remember – that this was exactly what ministers were saying a decade ago.
In 2013, the then employment minister, Esther McVey, was among many ministers who used the phrase when she wrote in a paper on the developing disability employment strategy that the government’s focus was now “on what people can do rather than what they can’t do”.
Coffey told the fringe event, hosted by The Centre for Policy Studies, the right-wing thinktank co-founded by Margaret Thatcher: “One of the biggest things that I am wanting to try and make sure we focus on in the next few years is for people who right now think they cannot work.”
She said she wanted to “flip our system about welfare benefits in terms of people with health conditions [so] instead of our system basically trying to encourage people to show how they really cannot do any work at all, to actually flipping that and see what is it that you can do and support you to do through some of our programmes, Access to Work and similar.”
In response to a question from The Mirror’s Dan Bloom, she said that ministers were “not trying to demonise people who can’t work”.
She then appeared to refer to some of the many disabled people whose deaths have been linked to DWP’s failings over the last decade, saying: “I know [The Mirror] and the BBC will have many images of people where wrong decisions have been made, quite clearly, but generally I think it is about trying to help people in that direction without having the demonisation you suggested.”
Coffey said that ministers’ original target had been for about 20 to 25 per cent of people on ESA to be in the support group – with the others in the work-related activity group, for those who have limited capability for work but must take part in some work-related activity – but the figures showed that “more like 80 per cent” were now being placed in that group.
She claimed that disabled people tried “to accumulate all sorts of different points in the [assessment] process in order to reach a certain level of support”, and she said she wanted “to see what we can do more to help with that”.
But she failed to point out that these figures are based on the small number of ESA work capability assessments now carried out, because of the move towards universal credit.
In January 2020, there were only about 4,000 ESA work capability assessments completed, compared with 69,000 in January 2015.
DWP confirmed yesterday (Wednesday) that it had yet to publish any data on work capability assessment outcomes for those claiming universal credit (UC), even though it began rolling out UC to replace new income-related ESA claims more than five years ago.
7 October 2021
Mother of Jodey Whiting fights on for justice with appeal bid
The mother of a disabled woman who took her own life after her benefits were wrongly stopped is to seek permission to appeal against a court’s ruling that there should not be a second inquest into her daughter’s death.
Joy Dove said she refused to accept that the first inquest in May 2017 – which lasted just 37 minutes – was a “thorough investigation” into the role played by the Department for Work and Pensions (DWP) in her daughter’s death.
Last month, the high court refused to quash the result of the first inquest into the death of Jodey Whiting and to order a second one, arguing that new evidence that had come to light since May 2017 did not require a second inquest.
Dove has now applied for permission to appeal that decision.
Among the grounds for her appeal, she believes the high court was wrong to conclude that the first inquest had carried out a deep enough examination of what happened, and to conclude that other forms of scrutiny of the death already existed.
Dove also argues that there are grounds under article two of the Human Rights Act – the right to life – for a second inquest, because of DWP’s multiple serious and systematic failings.
In rejecting the case last month, Mrs Justice Farbey argued that DWP’s failings had been “shocking” and that the decision to remove her employment and support allowance (ESA) “should not have happened”.
But she said that DWP’s errors “amounted to individual failings attributable to mistakes or bad judgment” and were not “systemic or structural in nature”.
Despite that conclusion, scores of deaths have been linked to DWP’s systemic failings, including its refusal to act on reports by coroners following inquests in 2010 and 2014 and a report in March 2014 by the Mental Welfare Commission for Scotland.
Secret reviews obtained by Disability News Service have shown that DWP civil servants repeatedly warned – between 2012 and 2014 – that policies on the work capability assessment were putting the lives of “vulnerable” claimants at risk.
In one such report, a civil servant warned: “The risk associated with disregarding the possibility that some of these claimants need more support or a different form of engagement is that we fail to recognise more cases like [the name was redacted] with consequent potential impact on the claimant.”
In 2017, DWP admitted failing to keep track of whether it had implemented 10 recommendations on improving the safety of “vulnerable” disabled people that had been made in these secret reviews.
And in January this year, the coroner who heard the inquest into Philippa Day’s death, concluded that flaws in the personal independence payment system were “the predominant factor and the only acute factor” that led to the young disabled mother taking her own life.
He had reached that decision after a nine-day inquest that uncovered multiple failings by both DWP and its private sector contractor Capita in the 11 months that led up to her death in October 2019.
Jodey Whiting took her own life in February 2017, 15 days after she had her employment and support allowance (ESA) wrongly stopped for missing a work capability assessment.
She had been a long-time claimant of incapacity benefit, and then ESA, and DWP and its assessors had previously noted the severity of her mental distress, and the risk that would be posed if she was found fit for work.
They were also aware of her long history of suicidal ideation.
Joy Dove said: “I believe that there should be a proper and full look at the way that she was let down by the DWP and that the public need to know what went wrong there.
“For Jodey’s sake, I have to appeal the refusal to grant us a second inquest.”
Her solicitor, Merry Varney, a partner with law firm Leigh Day, said: “Our client is arguing that the divisional court was wrong not to find it necessary and desirable in the public interest for a second inquest to take place to investigate the possibility that DWP failings, described by the court as ‘shocking’, caused or contributed to Jodey’s death.”
7 October 2021
Conservative conference: New minister silent on plummeting Access to Work figures
The new minister for disabled people has refused to comment on figures that show how spending on Access to Work (AtW) plummeted during the pandemic, despite ministers plugging the programme during this week’s Conservative party conference.
Chloe Smith highlighted the scheme at two fringe meetings at the conference in Manchester, as part of the clear focus of ministers – including work and pensions secretary Therese Coffey (see separate story) – on policies that will try to push more disabled people with high support needs towards work.
Coffey had pointed to AtW as a way to encourage disabled people with high support needs who “right now think they cannot work” to instead “see what is it that you can do”.
But when Disability News Service (DNS) asked Smith if she was aware of the drop in AtW spending and what she thought the reason for it was, she said she would answer the question through the Department for Work and Pensions (DWP) press office.
DNS pointed out that this appeared to be asking the DWP press office to breach Civil Service rules, which state that “impartial civil servants should not be asked to attend or take part in party conferences with their minister”, because of the political nature of such events.
But instead of admitting her apparent error, Smith claimed that the question was only political because it was being asked at a party conference.
The figures – published last week by DWP – show that spending on AtW fell to £109.3 million in 2020-21 from £141.7 million in 2019-20 – a fall in real spending of 27 per cent – following a steady increase over the previous four years.
There was also a fall of 14 per cent in the number of disabled people receiving AtW between 2019-20 and 2020-21, from about 43,000 to about 37,000, which the DWP report said “may have been due to the impact the COVID-19 pandemic had on the UK labour market”.
Despite highlighting the AtW scheme at the conference, and pushing it as part of her party’s policies on disability employment, Smith insisted that asking her if she was aware of the drop in AtW spending and what she thought was the reason for the fall was not an “inherently political” question.
Asked if she was not aware that AtW spending had plummeted during the pandemic, she said: “We haven’t the figures in front of us, so we’ll do it that way [through the DWP press office].
“What you need is the minister’s answer so I shall give you the minister’s answer with the support of my press office.”
When asked to confirm if this meant that she had been unaware of the figures, she accused DNS of “going down a rabbit hole”.
Guidance published by the Government Communication Service states clearly that government press officers must “insist that all political aspects are handled by the party political press office or special adviser”.
It also states: “Ministers must be protected from accusations of using public resources for party political purposes…”
Smith’s comments came after a fringe meeting hosted by the disability charity Scope and the Centre for Social Justice.
During the meeting, she expressed support for the social model of disability, which she said was an “important component” of the government’s thinking on disability employment, and “expresses that people perhaps should not be seen as disabled in themselves but are held back by the world around them”.
In answer to a question from DNS about how her understanding of the social model would affect her work in this area, she said: “I very much agree with that school of thought and the practical answer to it is that the National Disability Strategy and the rest of the work that we are doing goes broad and deep precisely to be able to meet those kinds of challenges.”
She also told the meeting that her dual role – as both a DWP minister and as head of the Disability Unit in the Cabinet Office – meant she was “sitting next door to the prime minister”, which gave her “the right and the ability to crack the heads together, and that is what we are doing in order to deliver the very many commitments in the National Disability Strategy”.
Smith said her experience of recovering from breast cancer in the last year would be helpful as she approached her brief.
But she also repeated the misleading statement that her predecessor, Justin Tomlinson, stated on many occasions, that the government had cut the disability employment gap by about five percentage points over the last seven years.
In fact, ministers have been told repeatedly by academics and others that Office for National Statistics data shows that the apparent fall in the gap is only due to an increasing proportion of people self-identifying as disabled.
Smith also stressed that the government needed to focus on regional differences in employment rates among disabled people in different parts of the country.
Smith, who grew up in rural Norfolk, told the meeting: “I really think there is a whole level to go into in terms of where disability employment is thriving and flourishing in this country and some places where it is not, and what are the drivers of that, geographical, social and economic, and how can we improve those.”
The meeting also heard from Richard Luke, Scope’s information officer for cerebral palsy, who spoke of his own employment experiences as a disabled person.
He said: “I believe that many companies and businesses are open to employing disabled people, but they are reluctant because of the perceived extra costs.”
He said most businesses did not know about the Access to Work scheme, although he also pointed out that it can be “less than perfect”, with claims “processed slowly” and lost receipts.
But he said: “Nobody can make use of a scheme that they don’t know exists.”
He also said that developments in technology during the pandemic that have allowed non-disabled people to work from home, have “also allowed disabled people to manage their conditions more effectively, meaning they are not running on empty”.
He said: “There is the potential to open the world of work to a new generation of highly-educated, talented and motivated disabled people, which can only be of benefit to the economy, to business and to the individual.
“Let’s not turn the clock back.”
Neither DWP nor the Cabinet Office had criticised Smith’s actions by noon today (Thursday), but neither had been able to explain why they were apparently not concerned by her attempt to enlist the DWP press office in protecting her political reputation.
A DWP spokesperson said: “Access to Work is a DWP policy and any queries on it DWP press office would therefore handle.”
He declined to comment further.
A Cabinet Office spokesperson said: “I obviously cannot comment on your conversation with the minister, but any government minister is allowed to refer a journalist to their press office if asked about government policy.”
He had not responded to a request to clarify this position by noon today.
A Conservative party spokesperson said: “This is a matter for the DWP press office.
“I understand you asked at conference, but it’s a DWP policy matter.”
7 October 2021
Care minister admits ignoring views of disabled people on government’s reforms
The newly-appointed care minister has admitted that she was completely unaware of disabled people’s criticism of the prime minister’s controversial social care reforms.
Gillian Keegan, appointed to the role only last month, told Disability News Service (DNS) this week that she had “not looked specifically at the disability response” to the reforms.
The Chichester MP has become the latest in a long line of Conservative ministers – and opposition politicians – to ignore the voices of disabled people, their user-led organisations, and service-users, and to focus instead on the views of large non-user-led charities, private sector care providers and local government.
Boris Johnson’s reforms were met with almost universal criticism across the disabled people’s movement over the inadequate level of funding, the failure to address the needs of working-age disabled people, the lack of detail, and the disproportionate impact of the plans on lower-income workers.
Where Boris Johnson called his plans “responsible, fair, and necessary” last month, disabled people’s organisations and grassroots groups, and disabled campaigners, described them as “disappointing”, “regressive” and even “insulting”.
But when asked by DNS about the response of disabled people’s organisations and user-led grassroots groups to the plan, Keegan insisted that “the sector” had so far “responded very positively” because, she said, they saw it as “brave”, “necessary” and realised that “no-one else has done it so far”.
She told DNS: “I don’t know the specific things that have come from that lobby but obviously I will work with the disability rights people to understand those better, but on the whole I think we have had very positive support from the sector.”
Keegan was speaking at a fringe event, organised by the older people’s charity Age UK and the right-wing blog Conservative Home, at the Conservative party conference in Manchester.
She had told the meeting earlier that the social care system was “under way too much pressure, we all see that… most of all for the people who are in the care system”.
She said there was “a lot of anxiety” over the funding for the plan “and where it comes from in the future”, and she added: “We have to make sure that that [national insurance] levy continues and it continues to underpin this system that we are going to build.”
Keegan also accepted that there were concerns about the support needs of working-age adults.
The plans focus on the introduction of a new 1.25 per cent national insurance levy and a similar rise in dividend tax rates, ringfenced for health and social care, but with most of the new funding put aside for the NHS, at least for the first three years.
The key social care measure is the introduction of a new cap of £86,000 on lifetime personal care costs and a more generous support system for those with significant assets, particularly older people who own their own homes.
On the decision to source the funding from the national insurance levy, and concerns that it placed too much of a burden on younger people, Keegan said: “It’s about getting the right balance.
“Every single option was looked at and every single one of them has pros and cons.”
She said the public trusted an increase in national insurance more than a rise in “general taxation” because it had been ring-fenced for health and social care.
In comments that are likely to further alarm disabled campaigners pushing for a legal right to independent living, health and social care secretary Sajid Javid later told the conference that those in need of health and social care support “shouldn’t always go first to the state”.
He said: “What kind of society would that be? Health – and social care – begins at home. Family first, then community, then the state.”
He focused – in his brief remarks on social care – on the support needs of older people, and said the government’s reforms meant that “we can plan with confidence that we and our families will be protected from catastrophic costs”.
7 October 2021
Video van drives disabled voices right to the edge of Tory conference
A video screen showing messages from disabled people to the UK government has been driven around the streets of central Manchester, as ministers were taking part in the annual Conservative party conference just a few hundred yards away.
The video screen – mounted on a van – was paid for through a crowdfunding initiative that raised more than £1,600.
It allowed disabled people’s anger and frustration about issues such as independent living, benefit cuts and years of attacks on disability rights to be heard by delegates to the conference, as many disabled activists are continuing to shield at home from coronavirus and so were unable to protest in person outside the conference.
Even as those messages were being shared with the people of Manchester*, multi-millionaire chancellor Rishi Sunak was attacking the idea of increasing benefits in his set-piece conference speech.
The action – put together by activists from Disabled People Against Cuts in Manchester, Sheffield and Cheshire – saw drivers beeping their horns in support of the video messages, and passers-by taking pictures of the screen.
One of those whose messages featured on the screen, a young disabled woman called Ezra, describes in the film how her income will fall by £20-a-week because of this week’s scrapping of the universal credit uplift.
She says: “At the moment the government only gives me £900-a-month to live on.
“Half of that goes on rent. The other half goes on bills. I’m not left with anything for food.
“I have to use the money that’s given to me to pay for the costs of my disability on food, and then the costs of my disability aren’t met.
“Every extra cost, every health cost that I have, we aren’t able to meet.”
She adds: “I’m supposed to have 24-hour care. There are 168 hours in a week. I am given 47 hours of care by the council and I have the biggest care package in my local borough.
“There has to be someone who needs more care than me, but they are shunted into [residential] homes, separated from their families, from their spouses, possibly before they even need to be, because it’s cheaper for the local area, and I can’t think of anything more wrong than that.”
Other disabled people speak in the film of the lack of support during the pandemic, their problems in securing accessible housing, the attacks on access to justice, the repeated breaches of disabled people’s rights over the last decade, the unfairness of the benefit assessment system, and the need for a universal right to independent living.
Andrew Lee, director of People First (Self Advocacy), says in the film: “Supporting people is extremely challenging and that needs to be respected.
“There are a lot of holes in our social care system and that needs fixing.
“It needs a lot more support and respect given to it in the same way that our NHS is.”
Dennis Queen, a spokesperson for Manchester DPAC, told Disability News Service: “Disabled people are talking about every aspect of our lives, every aspect of our rights has been affected by this government, their policies and their practices.
“We have been given a clear message since 2010 about the value of our lives and that message has got worse, a lot worse.”
DPAC’s Shabaaz Mohammed said: “Disabled people taking part in our Disability Justice on the Big Screen event come from all walks of life and they have a clear message for the politicians: enough is enough.
“Incompetent and cruel decisions made by ministers, MPs and local council leaders alike have life or death consequences for disabled people and their families.
“Three out of every five lives lost to the pandemic were disabled people’s lives – yet disabled people make up only one in five of the general population.
“That statistic shames us as a society.”
Rick Burgess, from Manchester DPAC, added: “We couldn’t just sit back when the Conservative conference is happening in our city – we had to act.
“We’ve had so much amazing support from disabled people’s organisations across England, who helped us hire the mobile video screen.
“We are doing it this inclusive way so that people still at high risk from COVID and having to shield can be included in our protest in a way that’s safe for everyone.”
He added: “Disabled people are coming together, fighting back and raising awareness in government and the wider public about realities of being disabled in 2021.
“We want our rights upheld, we demand better from the politicians. We will not be silenced.”
*The film is due to be posted on YouTube next week
7 October 2021
Down’s syndrome bill could be world’s first, says former cabinet minister
A former cabinet minister is hoping that his bill aimed at improving services for people with Down’s syndrome will be the first such legislation in the world.
Dr Liam Fox, a former defence secretary, told a fringe meeting at this week’s Conservative party conference in Manchester that his bill would address the problems people with Down’s syndrome have in accessing education, health and social services.
He drew up the private members’ bill after meeting Annabel Tall, who stood for the Conservative party at the 2019 general election in Bath, and has a son, Freddie, with Down’s syndrome.
Fox told the meeting, organised by the Conservative Disability Group: “Annabel’s son Freddie had a number of problems accessing the level of care you would expect would be available in a place like north Somerset, the 18th wealthiest constituency in Britain in the 21st century, but it wasn’t.
“There are perfectly preventable tragedies that we can avert by doing something now.”
The bill has three simple clauses, and would force education, health and local authorities to take people with Down’s syndrome into account when providing education, health and care services.
Fox told the meeting: “The very first reaction from government at all levels was, we don’t need this legislation because we’re doing all these things already.
“And my retort was, ‘If you’re doing them all already why would you worry about the legislation?’”
He added: “It means then that if services are not provided, then there is a legislative mechanism for redress. It is a foot on the ladder legislatively, which I think is important.”
He said they had chosen people with Down’s syndrome to be the subject of the bill because they all had an “absolutely clear diagnosis”, which meant their rights would be “watertight”.
He added: “It sets a precedent that can be followed later on in other areas. If we can get a foothold in this, and it creates a precedent, others can follow.”
If the bill is approved by both Houses of Parliament, he said, it would make Britain the first country to introduce such legislation for people with Down’s syndrome.
Fox said he had spoken to Boris Johnson, the prime minister, shortly before the meeting, and he had been unaware of the sharp increase in life expectancy – from about 13-15 years to about 60 years of age – for people with Down’s syndrome in the last 60 years, which Johnson told him was “a tremendous testament to what we are actually able to do in healthcare in the UK”.
Fox said he had told Johnson that he would surely therefore want to make the same kind of improvements in social care and education services for people with Down’s syndrome.
Ismail Kaji, a parliamentary officer with the disability charity Mencap, spoke at the meeting about his experience of discrimination in employment as someone with a learning difficulty, before he joined Mencap, and how the Access to Work programme had supported him in his current job.
He said: “I am passionate about inclusion… people should be treated fairly and equally.
“Unfortunately, for people with a learning disability, this is not happening in many areas of life.”
Tall also told the meeting that she was “passionate about inclusion” and pointed to “the difficulty in the lack of provision for planning for adults with Down’s syndrome”.
She said: “The huge advantage of the bill… is it will allow us to avert what is very easily foreseeable disaster for many families.”
7 October 2021
News provided by John Pring at www.disabilitynewsservice.com
