Disabled people’s organisations draw up 10-year plan to tackle inequality
Disabled people’s organisations have sketched out a 10-year plan – at a cost of up to £18 million – to tackle the “deep and persistent” inequality, marginalisation and discrimination that is blighting the lives of millions of disabled people.
A new report, built on research by eight regional disabled people’s organisations* (DPOs), says that this “very significant” level of funding – of between £10 million and £18 million over the next decade – is needed to build an “independent, sustainable, powerful” network of regional DPOs in England.
An initial application for £5 million in funding has already been submitted to the National Lottery Community Fund’s Growing Great Ideas programme.
The report – Understanding the Needs of Disabled People’s Organisations in England – warns that DPOs across England are in an “increasingly precarious situation”, with many existing “hand to mouth” with “little ability to carry out long term planning or invest in staff and service development”.
Many DPOs have closed or lost funding, says the report, mostly due to austerity cuts “passed down from central government to Local Authorities”, while “demand and need” for their services is increasing among disabled people “hit by a combination of structural inequality, rising poverty and Covid-19”.
The report includes the results of a survey of more than 100 DPOs, believed to be more than a quarter of those currently operating in England.
They reported deteriorating, and increasingly hostile, relationships with public bodies, particularly local authorities.
They also reported a contract culture that “favours large commercial organisations and the disability charities, led by non-disabled people, who often compete against local DPOs in the tendering process”.
The report says that a “clear picture” has emerged of “systemic marginalisation of DPOs, by the UK Government at a national level and increasingly at a local level by Local Authorities”.
But the report also describes “widespread and increasing isolation from other DPOs”.
And it calls for work to bring more young disabled people into the disability movement, and for action to address the gap left by the closure of many self-advocacy organisations run and controlled by people with learning difficulties.
It says more must be done to support DPOs to better reflect the diversity of their communities, while intersectional DPOs, such as those representing black disabled people, are “very few in number and are chronically under-supported and under-funded”.
The authors of the report – Tracey Lazard, of Inclusion London, and Mark Harrison, of the Reclaiming Our Futures Alliance – say the aim is to create a society where it is “unthinkable that a policy or decision about Disabled people would be made without the involvement of Disabled people and our organisations”.
And they want DPOs to be viewed as “must have” critical friends and co-producers in any work involving equality, community, well-being and social justice.
The report calls for the social model of disability, intersectionality, co-production and a human rights approach to disability to be “embedded in the work of all public bodies”.
The report, funded by the National Lottery Community Fund, makes more than 40 recommendations, including calls to build and strengthen a structure of a single, well-resourced, regional DPO in each of eight regions of England.
The report says: “A well resourced and co-ordinated group of DPOs providing regional infrastructure support is the most effective way of supporting local DPOs in each region to thrive.”
The eight regional DPOs would also be supported to address the “urgent need to co-ordinate and bring together regional DPOs to develop a collective and authentic voice for disability equality at a national level”.
Lazard and Harrison say the vision is to “reclaim our power as DPOs and as a Disabled people’s rights movement and to get our equality and inclusion back on track by building an independent, sustainable, powerful infrastructure network of regional DPOs”.
Lazard told Disability News Service that she had been taken aback during the research by the “fragmentation” of the DPO sector and “how isolated DPOs are from each other”.
She said: “It has huge implications for us as a movement and our ability to bring about change, because we are not linking up.”
She said the report also showed the “further marginalisation and the increasing hostile environment between DPOs and statutory bodies, primarily local authorities, after 11 or 12 years of austerity”.
Lazard said that “beefing up regional infrastructure support” was vital to allow those larger regional DPOs to carry out the arms-length campaigning that smaller, local DPOs are often not able to do because of their reliance on local authority contracts.
She said: “It creates a collective voice and a buffer of funding that gives DPOs in a region an opportunity to have a bit more power to push back [for example, against local authorities that are hiking care charges].
“We do think it’s the best way to support local DPOs and to ensure national work reflects what is going on on the ground.”
She said the UK government needed to hear that the DPO sector “needs investment and recognition and we need to be valued, and communities of interest like disabled people are absolutely integral to the ‘levelling up’ and ‘building back better’ agenda.
“If they are serious about achieving those things with disabled people then they have to start working with us and start investing in our sector that has brought about massive positive social change.
“In the end, disabled people have to be leading this change. If you’re not [enabling that], you’re actually actively perpetuating oppression and disempowerment.”
She said their report was “a challenge to funders to provide the long-term strategic investment that we need”.
Lazard added: “We think the vision is exciting, we think it is the right vision.
“We think we have focused on the key infrastructure, and there is a real challenge to progressive funders out there to step up to the plate and respond.”
*Equality Together in Bradford; Disability Sheffield; Greater Manchester Coalition of Disabled People; Birmingham Disability Resource Centre; Equal Lives in East Anglia; Spectrum Centre for Independent Living in the south-east; Inclusion London; and West of England Centre for Inclusive Living (WECIL)
15 July 2021
PM’s ‘reckless’ move to lift most COVID rules will leave millions ‘to fend for themselves’
The government has been accused of abdicating its responsibility to millions of disabled people in England and leaving them to “fend for themselves”, after deciding to push ahead with “reckless” plans to lift most COVID-19 restrictions.
On Monday (19 July), the prime minister is lifting most of England’s legal restrictions and social distancing measures, including those requiring most people to wear face coverings on public transport and in shops.
But new government guidance for the 3.7 million people in England seen as clinically extremely vulnerable (CEV) to the virus has been criticised for failing to offer them support or protection, while making them largely responsible for their own safety.
Only last month, Disability News Service (DNS) reported that discrimination by the government as it responded to the pandemic, and within the NHS, could be to blame for disabled people’s sharply-increased risk of dying from COVID-19.
That new study, partly carried out by the Office for National Statistics, said that working-age disabled women with higher support needs in England were about 90 per cent more likely to die from coronavirus than non-disabled women of the same age (the figure for men was 74 per cent), even after taking into account factors such as underlying health conditions, poverty and whether they lived in a care home.
Despite this research, which showed again that 58 per cent of COVID-related deaths in England have been of disabled people, the latest government guidance repeatedly places the responsibility for keeping safe on CEV people, saying that they “may wish to think particularly carefully about additional precautions you might wish to continue to take”.
And it says they may also wish to “think particularly carefully about taking precautions when meeting others you do not usually meet with” and might want to “consider going to the shops and pharmacy at quieter times of the day”.
Priority access to supermarket delivery slots ended last month, while CEV pupils and students are already expected to have returned to their school or college.
The new guidance says that it will now “no longer be necessary for the government to instruct people to work from home”, while workplace social distancing measures will end, and the “furlough” job retention scheme will be wound up on 30 September.
But it also says that – although no longer mandatory – the government still “expects and recommends” that people wear face coverings in crowded areas, such as on public transport, which it says might make CEV people “feel more relaxed”.
London’s mayor, Sadiq Khan, took the decision this week to over-ride the government’s move to lift most of the restrictions by ordering that wearing face coverings would remain mandatory for those using public transport in the capital, apart from passengers who are exempt.
Tracey Lazard, chief executive of Inclusion London, said the government’s move to ease the rules and its new CEV guidance were “terrifying” for many disabled people, and “the latest in a long line of examples of disabled people being ignored, dismissed and our needs not thought about”.
She told DNS that CEV people were essentially being told to shield again because it would be impossible to know who in a supermarket had been fully vaccinated, and “to go round asking everybody in your vicinity to put on a mask as you enter that space”.
Lazard pointed out that the move would also disproportionately affect people from black and minority ethnic communities.
She said: “It’s an abdication of government duties and responsibilities.”
Fazilet Hadi, head of policy at Disability Rights UK, said: “The government is removing all coronavirus restrictions on 19 July, leaving almost four million CEV people to fend for themselves.
“Despite the UK still experiencing a public health emergency and the rapid increase in infection rates, the government maintains that we must all learn to live with COVID.
“However, for at least four million of its citizens, the risk of dying from COVID remains unacceptably high.
“The government’s reckless approach has been roundly criticised by scientists and doctors; it leaves CEV people to fend for themselves, viewing them as being outside of mainstream society.
“They are asked to take precautions, to be cautious, to avoid indoor spaces and not to meet people who haven’t been double vaccinated.
“Surely, in an ongoing pandemic, there should be measures that keep all of us safe.”
The concerns came as a letter to The Lancet from more than 100 experts – and later signed by hundreds more from across the world – criticised the government’s “premature” decision to lift most of the restrictions, which it described as a “dangerous and unethical experiment”.
But the letter also warns that, “as deprived communities are more exposed to and more at risk from COVID-19, these policies will continue to disproportionately affect the most vulnerable and marginalised, deepening inequalities”.
Meanwhile, the Department of Health and Social Care (DHSC) has not been able to tell Labour’s shadow women and equalities secretary, Marsha de Cordova, whether it has carried out an assessment of the impact of the plans to end COVID-19 restrictions on disabled people and other equality groups.
Public health minister Jo Churchill told her this week, in a written answer, that it “will not be possible to answer this question within the usual time period”.
And new research by the Office for National Statistics showed that nearly a third of CEV people (29 per cent) said they were continuing to shield from the virus, despite official shielding advice being paused on 1 April.
Joanna O’Malley is one of the CEV people who have been left extremely concerned by the government’s decisions.
She told DNS: “As a person who is categorised as clinically extremely vulnerable, it’s extremely concerning to think that once again the government are leaving us unprotected in order for the economy to grow, thus showing they haven’t learned from past mistakes and continue to treat us as second-class citizens.”
She has been supporting a parliamentary petition which calls on the government to reverse its position on wearing face coverings and to ensure they remain mandatory in indoor settings like shops and public transport.
O’Malley said: “Asking people to wear masks indoors is such a small ask when people’s lives are at risk.”
The prime minister, Boris Johnson, was asked about the impact on CEV people in yesterday’s prime minister’s questions, by Labour MP Clive Efford.
He told Johnson: “My constituent Jacqui Davies was diagnosed in April with a type of blood cancer that prevents her immune system from developing antibodies against COVID.
“Jacqui wants to live as normal a life as possible, and to do everyday things like going shopping, but she is terrified and she thinks that the rapid lifting of restrictions on Monday is putting her at risk.”
He asked Johnson to “rethink the reckless gamble of lifting all these restrictions on Monday”.
The prime minister told him that ministers “expect and recommend everybody to wear a face covering in a confined space where they are meeting people they do not normally meet, and that is quite right”.
DNS asked the government how it justified removing nearly all the measures that were supporting CEV people during the pandemic, and how ministers would support and protect those who are CEV over the next few months, but a DHSC spokesperson had not responded by noon today (Thursday).
*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
15 July 2021
Grenfell survivor tells minister: Evacuation plans ‘are difference between life and death’
A disabled woman who made a “miraculous” escape from the top floor of Grenfell Tower has told a parliamentary meeting that her husband would still be alive today if there had been an evacuation plan in place for her.
Flora Neda and her son – who carried her on his back down many of the building’s 23 floors – were the only two survivors of the fire from the top floor.
She had begged her husband, Saber, to follow them but he stayed behind to help four women who had taken refuge in their flat, part of a large group of residents who had been told a fire brigade helicopter was coming to rescue them from the roof.
Part of their flat was now already on fire, and Saber told his wife that he would be right behind them, but she later found out that he had died from his injuries after apparently jumping from the tower.
Many disabled residents were among the 72 people who lost their lives in the fire, on 14 June 2017, and the inquiry into the fire detailed how they had been failed repeatedly by both London Fire Brigade and the organisation that managed the building on behalf of a local authority.
The Neda family had arrived in London in 1998 as refugees, after fleeing the Taliban in Afghanistan, and settled in Grenfell Tower, where they lived happily for many years.
Flora Neda described her “horrific” ordeal this week to a joint meeting of the all-party parliamentary groups on disability and on fire safety and rescue, attended by the building safety minister Lord Greenhalgh.
The meeting was discussing a government consultation on plans to force owners and managers of high-rise residential buildings to prepare personal emergency evacuation plans (PEEPs) for all residents who may find it difficult to “self-evacuate”.
But disabled campaigners have raised serious concerns that the measures will not go far enough and will leave many disabled residents without a legal right to a PEEP (see separate story).
Flora said her husband had been told repeatedly by the fire and rescue service to “stay put, stay put”.
She told the meeting of MPs, peers, fire safety experts and campaigners: “If we hadn’t trusted them or there had been some sort of an evacuation plan, my husband would be alive today.”
Part of her story was told by her interpreter, who told the meeting: “It’s important that you know that the lack of a PEEP is the difference between life and death.
“Fire doesn’t discriminate, and no-one knew it was going to happen, but when it happened no-one knew what to do, and the only thing they were told was, ‘stay put, stay put, stay put, we are coming to get you,’ and no-one came.”
She added: “It was really a miracle that they survived, they were the only two people that survived from that top floor.
“They had a horrific evacuation. In her witness statements to the inquiry, she described the horror of it, stepping over people as they were taking their last gasp of breath, people were grabbing her ankles… it is a miracle that they survived.”
Although she managed to walk a few floors, for much of the way her son, Farhad, carried her on his back through the choking black smoke.
But she told the meeting that she did not see a firefighter until they reached the fifth floor of the building.
After they were helped down the final five floors by firefighters, both Flora and her son were taken to hospital and placed into induced comas because of the effects of the toxic smoke they had breathed in, with Farhad spending a week in a coma and his mother three weeks.
In the last couple of weeks, Farhad has been diagnosed with emphysema.
His mum told the meeting; “It is all because of that fire and how we were ignored.”
She said they had lived in their flat in Grenfell Tower for 20 years as tenants of the Royal Borough of Kensington and Chelsea, and in all that time they were never told what they should do in the event of a fire.
She added: “For those people who are private tenants and own their own properties, if the government and council don’t listen to you as private owners, imagine how little notice we are taken of as social housing tenants who are also disabled and in this situation.
“Four years after this catastrophe and we hear about how many of these buildings still have that kind of cladding on them and you can only conclude that no matter what, we are always ignored.”
The meeting also heard that one of the women who had taken refuge in their flat on the 23rd floor, and who died in the fire, was another disabled resident, Sakina Afrasehabi.
It was legal action taken by Sakina Afrasehabi’s family that forced the government to launch the consultation, after the original plans for PEEPs put forward by ministers were criticised for watering down the Grenfell inquiry’s recommendations.
Those original plans would only have applied to disabled people living in high-rise buildings covered with the aluminium composite material cladding used on Grenfell.
But although the proposals outlined in the consultation have expanded the proposed protections, they would still only guarantee a PEEP to disabled residents living in buildings over 18 metres in height.
15 July 2021
Minister told his ‘absurd’ high-rise evacuation plans are ‘dangerously misplaced’
A minister has been told that his government’s “absurd” plans to protect disabled residents who would need assistance if they had to evacuate from high-rise blocks of flats are “dangerously misplaced”.
A parliamentary meeting heard this week that the “arbitrary” proposals drawn up by the government would mean that only those disabled people living in blocks more than 18 metres in height would be given the legal right to a personal emergency evacuation plan (PEEPs).
Sarah Rennie, co-founder of Claddag, a leaseholder disability action group, said this was a “dangerously misplaced assessment of risk”.
She said it would lead to “absurd scenarios where a disabled person living on the ground floor of a high-rise building will have a legal right to a plan but somebody who is maybe on the sixth floor of a mid-rise building won’t be entitled to one”.
She was speaking at a joint meeting of the all-party parliamentary groups on disability and on fire safety and rescue, attended by building safety minister Lord Greenhalgh.
The meeting was discussing a government consultation on plans to force owners and managers of high-rise residential buildings to prepare PEEPs for all residents who may find it difficult to “self-evacuate”.
The consultation, which closes on Monday (19 July), was forced on the government after it tried to water down recommendations on PEEPs made by the Grenfell Tower Inquiry.
Many disabled residents were among the 72 people who lost their lives in the fire, on 14 June 2017, and the inquiry into the fire later detailed how they were failed repeatedly by both London Fire Brigade and the organisation that managed the building on behalf of a local authority.
The meeting also heard from Flora Neda, a disabled resident of Grenfell Tower and one of only two survivors from the top floor of the building, who told MPs and peers that her husband – who died in the tragedy – would still be alive today if she had had a PEEP in place (see separate story).
But Rennie and other disabled campaigners and allies say that the measures now proposed by the government will still not go nearly far enough and will leave many disabled residents without a legal right to a PEEP.
She told this week’s meeting: “For years, non-disabled industry experts have frankly played god by insisting that we, disabled people, must stay put, wait to be rescued, whilst we watch everyone else calmly leave the building to a place of safety.
“We’ve been told it’s the safest thing for us when frankly the reality is that we have not been given the options or the opportunities to make informed decisions.”
She said the “arbitrary” 18-metre rule was “unjustified”, while there were concerns that disabled people would be forced to pay for the aids and adaptations needed to ensure a safe evacuation.
She called on the government to set up a central fund to pay for these “essential costs”, which would also avoid them being forced onto other leaseholders as service charges.
The meeting heard how one disabled woman, Georgie, had been forced to crowd-fund for an evacuation chair because the managing agent of the block of flats where she lives – which is less than 18 metres high – had refused to provide her with a PEEP, and when she paid for one herself, refused to pay for the evacuation chair recommended in the plan.
Rennie said the consultation was also “totally silent” on how the PEEP proposals would be monitored and enforced.
Elspeth Grant, a former secretary general of the Institute of Fire Safety Managers but representing Disability Rights UK at the meeting, said: “In the Grenfell Tower fire, a grossly disproportionate number of disabled people died.
“No-one can explain why there were no PEEPs in place prior to the fire.”
She added: “Today there are tens of thousands of residents living in fear because they are unable to evacuate or even to move away from imminent danger if their own flat or a flat on their floor is on fire.
“Disabled residents are routinely refused PEEPs, even when a building has an immediate evacuation strategy due to dangerous structural defects.
“An average response time for the fire and rescue service is very fast – eight minutes.
“However, if you’re in a high-rise or a medium-rise it can be up to a further 20 minutes before a firefighter is actually in a position to rescue a disabled person on an upper floor.
“A properly developed PEEP would enable the disabled person to move away from danger quickly without requiring a rescue.”
She added: “How many of us would be prepared to live or have our loved ones live in a building from which they could not escape?
“Yet this is the position that tens of thousands of disabled residents find themselves in in 2021 in the UK.”
Lord Greenhalgh said he had listened “very intently” to the “very, very powerful testimony” of Flora Neda.
He said there would be a “regulatory regime” for “high-risk, high-rise residential buildings, with the building safety regulator and the chief inspector of buildings providing that oversight for the 12,000 high-rises”.
But he said he had heard the call to take further steps on PEEPs.
And he told the meeting that the government’s proposals “do not see the PEEP as a driver of cost in and of itself” but that he also heard the concerns being raised about costs, although “where it lies” is currently “a matter for the responsible person” (likely to be the building’s owner or manager).
Sir David Amess, the Conservative MP who chairs the fire safety and rescue all-party group, told the meeting: “Hundreds of blocks of flats will continue to be wrapped in flammable cladding and/or riddled with internal safety defects for years yet.
“Many disabled people have no refuge area or opportunity to move away from fire if it was in the flat next door.
“The height criterion, I believe, is the wrong test. Everyone unable to self-evacuate a building must have the right to a PEEP.”
15 July 2021
Wembley violence and chaos ‘could have been catastrophic’ for disabled supporters
The violence and chaos that preceded Sunday’s Euro 2020 final at Wembley could have been “catastrophic” for disabled supporters attending the game, according to a user-led campaigning organisation.
Reports have emerged that ticketless England fans who forced their way into the stadium gained access through at least one of the accessible entrances, while many ended up packed into an accessible viewing area reserved for disabled people.
Melissa Reddy, senior football correspondent for The Independent, posted the following tweet a quarter of an hour into the game: “Steady flow of ticketless fans were still rushing into stands when the opener was scored.
“Aisles so full, stairs blocked and the disabled area in front of the press box is packed.
“Paying supporters pleading with helpless stewards to get them out. Kids scared, seats stolen. Unsafe.”
Level Playing Field (LPF) – a disabled-led campaigning charity which represents disabled sports fans – has been passed information by fans who attended the game, and said it was “deeply concerned about the potential threat to the safety of disabled spectators at the match”.
One of those who got in touch with LPF described how their son, a wheelchair-user with high support needs, was stuck in the middle of the crush when the entrance for disabled fans was “stormed by so called fans without tickets”.
He was helped by both English and Italian fans but could have been badly hurt, and the incident “ruined his experience”.
There were further reports on the LPF Facebook page, with one man describing how his wife and disabled son were “almost crushed by louts storming the disabled enclosure”.
He said the stewards “were overwhelmed and the police were completely absent”, and the situation was “dangerous and out of control”.
Another said: “Two people on our platform left as the stewards were unable to sit people down as others (I’m guessing the people who stormed the stadium) were in their seats.”
LPF has contacted the Football Association – which owns the national football stadium – to ask it to ensure that any investigation will examine the impact on disabled fans.
A spokesperson for LPF said that disabled fans “have the right to feel safe to watch football, and any fan that would endanger the safety of other supporters is not a true football fan”.
Tony Taylor, LPF’s chair, said: “The safety of all fans must be of paramount importance and breaches that took place at accessible entrances are a matter of great concern.
“These accessible entrances and viewing platforms are there for the use of disabled fans and it seems that it was only good fortune that prevented a catastrophic outcome.
“It is only right that the impact on disabled fans is thoroughly reviewed but we recognise that there are broader issues that do need to be looked at, including intelligence gathering, stewarding and policing (both in and around the stadium).
“Accordingly, Level Playing Field has been in contact with officials at Wembley Stadium, along with the Metropolitan Police and other relevant bodies to seek an explanation of what went wrong.
“We recognise that reports about the events at Wembley on Sunday night have sent a shockwave through the country, but the impact on disabled people in particular cannot be ignored.
“We know of many who are now questioning if it is safe for them to attend large events and it is imperative that a thorough, detailed and transparent review is undertaken to ensure that there is no repeat of these appalling scenes.”
An FA spokesperson refused to answer questions about the involvement of accessible entrances in the chaos, accessible viewing areas, or the experiences of disabled supporters at the game, or to say if it would ensure that any investigation would examine the impact on disabled fans and how to ensure their safety in the future.
But he said in a statement: “We will carry out a full review and investigation into the events that took place at Wembley Stadium before and during the UEFA Euro 2020 final.
“This will be done in collaboration with the police, the Greater London Authority, the safety advisory group and the tournament delivery stakeholders.
“Security and stewarding numbers for the UEFA Euro 2020 final exceeded the requirements for the match and were greater than any other previous event at Wembley Stadium.
“However, the behaviour of the people who illegally forced their way into the stadium was unacceptable, dangerous and showed total disregard for the safety and security protocols in place.
“No steward or security staff should be subjected to this type of behaviour and we thank them for their support on the night.
“We also apologise to anyone at the match whose experience was affected by this unprecedented level of public disorder.
“We will continue to work with the relevant authorities to identify and take action against these people where possible.”
15 July 2021
DWP agrees to stop high-pressure tactics on eve of court hearing
The Department for Work and Pensions (DWP) has agreed to stop intimidating disabled claimants into accepting lower benefit payments than they are entitled to, hours before it was due to face a high court hearing over its tactics.
Work and pensions secretary Therese Coffey agreed on the eve of the judicial review hearing to change policies described as “unfair, unlawful and discriminatory” and to retrain staff.
Her department was facing a legal claim brought by a disabled woman who was left so distraught by its high-pressure tactics that she tried to take her own life.
The settlement is just the latest evidence of an unsafe and institutionally disablist culture at the department, after a decade of high-profile tragedies, legal cases, campaigns, research, protests, television exposés, parliamentary debates, and reports by MPs and organisations into how the department’s benefits regime impacts on disabled people.
Lawyers for a disabled woman, referred to as K, had gathered evidence for her case against DWP that showed that disabled claimants who had appealed a DWP decision on their benefit claim were often being called by the department and encouraged to accept offers that were lower than they were entitled to by law.
They also found evidence that DWP staff had repeatedly called claimants directly, even when they had been told to liaise with their representatives, and had failed to tell them about their appeal rights.
K, who has high support needs due to physical and mental health conditions, had appealed against DWP’s decision to award her a lower rate of personal independence payment (PIP) than her GP and support workers believed she was entitled to.
But she then received a call from DWP, without warning and from a withheld number, pressuring her to accept more than she had been offered before, but not the full amount she was entitled to.
She was told she had an hour to consider the “offer” and was warned that it was “scary going to a tribunal”.
There was no call from DWP to K’s mother, who DWP had been told on her paperwork was her representative.
K did not think she could appeal the new “offer” and DWP failed to tell her about her right to do so.
She decided to accept the offer, but the experience left her feeling suicidal and struggling to cope.
And when she later realised DWP had been using the same tactics on other disabled claimants, she instructed Public Law Project to help her challenge the policy through the courts.
She said: “The caller from the DWP told me I had one hour to think about it and said that if I accepted the offer then the tribunal appeal would be cancelled, but if I didn’t accept the offer then I could lose the whole award at the tribunal.
“I was imagining me in a big court room trying to argue my case on my own and with my whole PIP award at risk.
“They called me back before I could speak to my mum, so I just accepted the offer as I didn’t know what else to do.
“I felt I had been pressured into making the wrong decision and I didn’t know how to put it right.”
DWP says the call was made as part of a process known as “lapsing an appeal”, where the department can revise a decision if new evidence or information becomes available after an appeal has been lodged, but before it is heard at a tribunal.
DWP claims it contacts claimants in cases where it has enough evidence to revise the decision to a higher award, but not to the level the claimant was seeking on appeal, to find out how the claimant wants to proceed.
It says that, if a claimant chooses to have their decision revised, they still have appeal rights and that these are set out in the subsequent decision notice.
But K, who had previously tried to take her own life, said: “I felt awful after the call, really panicked, anxious and upset.
“I felt like I had been pressured into making the wrong decision. I obsessed about the call for weeks.
“I was paranoid that I was being targeted by the DWP and again I tried to take my own life.”
She said the way DWP treated people was “disgusting”.
She added: “The DWP call had a serious and negative affect on my mental health at a time when I was already really struggling.
“It haunted me for a long time, affected my sleep and made me really ill.
“I felt I had been pressured into making the wrong decision and I didn’t know how to put it right.
“I now know that lots of other people felt the same as me when getting these calls.
“It’s really not right and it needs to stop.”
Sara Lomri, K’s solicitor at Public Law Project, said: “It has not been easy for our client to bring this claim.
“This challenge has demanded a huge amount of personal resilience and determination.
“Our client does not stand to gain any sort of pay-out here, she is doing this simply to make sure that nobody else has to go through what she did.”
She added: “Judicial review is always a last resort, and this case shows why there must be an accessible legal route for people to hold public authorities to account.
“The law is there for us all to follow, and when the state makes a mistake, acts unlawfully, and will not change itself, there must be a way to correct it.”
A DWP spokesperson declined to explain how such a policy could have been introduced; whether it would apologise for its actions; or whether those actions again suggested that the department was institutionally disablist and not fit for purpose.
But he said in a statement: “Our overarching aim is that claimants are paid the correct amount of benefit at the earliest opportunity.
“We contact people if we can revise a decision and increase their benefits award as a result of new evidence becoming available after their appeal was lodged – and they always have the option to continue with their appeal or challenge a revised decision.
“We have addressed PLP’s concerns by improving our guidance on telephone calls so options and appeal rights are always clearly set out, as well as stopping making contact when a tribunal is imminent, and we are pleased they have withdrawn their case.”
15 July 2021
Frustration over MPs’ failure to hear disabled people’s voices on ATU scandal
Disabled activists have welcomed a new parliamentary report that calls for an end to most admissions to long-term health institutions for autistic people and people with learning difficulties, but they have criticised its lack of direct evidence from disabled people.
The cross-party Commons health and social care committee this week released its report on how autistic people and people with learning difficulties are being treated in long-term mental health institutions.
It said there were still more than 2,000 such people in secure mental health inpatient settings in England, where they are “unable to live fulfilled lives and are too often subject to treatment that is an affront to a civilised society”.
The average length of stay in one of the so-called assessment and treatment units (ATUs) – where autistic people and people with learning difficulties are often detained – is a “shocking” six years, often because of the “totally inadequate” provision of alternative community services.
In ATUs, they can experience “intolerable treatment”, including abusive physical and chemical restraint, and long-term seclusion and segregation.
The one autistic person who spoke to the inquiry was Alexis Quinn, who in February described the system to the committee as “brutal… aggressive… routine-less, chaotic, sensory-charged warehousing”, and often situated hundreds of miles from the autistic person’s home.
She said then that she had seen no improvement in ATUs since she was last detained about four years previously.
Among its recommendations, the committee calls for a ban on new long-term admissions of autistic people and people with learning difficulties to such institutions, except for forensic cases (where there has been criminal behaviour).
It also recommends the closure of all ATUs within two years and for them to be replaced with person-centred services, as well as an independent review of all deaths of autistic people and people with learning difficulties in both inpatient and community settings.
But disabled campaigner Simone Aspis, director of consultancy Changing Perspectives, said the committee’s failure to take more oral evidence from people with learning difficulties and autistic people was “absolutely shameful”.
She said: “We are constantly getting all these reports being published by politicians, by government, independent reviews, and very rarely do they ever involve or engage with people with learning difficulties or people who are autistic.”
Aspis, who has been involved in securing the release of people from ATUs for several years, said: “We are never asked what needs to be changed. If we are not involved in terms of having our voice heard, then how do things change?
“History tells us every time that nothing happens unless we are absolutely at the centre of making recommendations for change.
“Clearly they don’t want to hear our voices.”
She also highlighted the committee’s failure to publish an easy read version of its report, which meant it was not accessible to many of the people it was making recommendations about.
But she welcomed the evidence given by Alexis Quinn, and many of the report’s recommendations.
Aspis also said she was concerned about the committee saying that “forensic” cases could still be admitted to long-term institutions, as she said that many autistic people and people with learning difficulties end up with criminal records because of the failure to understand their behaviours and due to a lack of support.
She also highlighted the report’s failure to mention the need for advocacy for people in such institutions.
Kat Williams, a director of Autistic UK, which is run by autistic people, said she was also disappointed at the failure to hear from autistic-led organisations and those led by people with learning difficulties, with the “excellent” Alexis Quin apparently the only autistic person to speak to the committee.
She was also critical of the failure to produce an easy-read version of the report.
She said the report’s failure to address how people with learning difficulties and autistic people would be informed of their rights was a “glaring omission”.
And she said the report should have made it mandatory that any new staff training must be co-produced with people with learning difficulties and autistic people.
Williams also criticised the report’s “inappropriate” recommendation for a new post of “intellectual disability physician” to co-ordinate care for both people with learning difficulties and autistic people.
She said that most autistic people do not have learning difficulties, while most people with learning difficulties are not autistic.
Williams said the report “raises several good points”, but that until they were actioned, and autistic people and people with learning difficulties were “involved as full partners in the implementation of its recommendations, we will reserve our optimism”.
The committee has so far refused to explain why there was no easy read version of the report, other than stating that select committees “don’t produce easy read versions of reports but can produce large print versions for visually impaired people”.
Asked why no organisation led by autistic people or people with learning difficulties was asked to give oral evidence, and why only one autistic person – and no person with learning difficulties – gave oral evidence, a spokesperson said the committee had been “keen to hear directly from people whose lives had been affected by the treatment they or their family members had received”.
She listed all those who had given evidence, including representatives of several non-user-led organisations, without explaining why the committee had not done more to hear the direct testimony of disabled people.
She added: “The committee also accepted written evidence that represented the views of those with lived experiences.”
None of this written evidence appears to have come from a user-led organisation.
The Department of Health and Social Care (DHSC) said it would respond to the report in due course.
A DHSC spokesperson said: “Our priority is to ensure autistic people and people with learning disabilities are supported to live well in their communities, receive safe and high-quality care, and are treated with dignity and respect.
“The number of inpatients in mental health hospitals with autism and learning disabilities has reduced by around 30 per cent in recent years, and we’re building on this with additional funding to cut admissions further and support the discharge of these patients back into the community.
“Earlier this year, we outlined proposals to limit the scope for people with autism and learning disabilities who do not have a mental health condition to be detained in the Mental Health Act white paper.”
15 July 2021
Disabled shopper left angry and frustrated after Next cordons off accessible bays
A disabled woman was left angry, frustrated and saddened by the “discriminatory” actions of a major retailer that blocked off a whole row of accessible parking bays for three days, to make space for customers queueing for its sale.
Amy-Louise Peach challenged staff on Monday (12 July) about the decision to block off all six or seven of the bays nearest the entrance to the Next store, but she was told it was needed because of the sale.
She said she was seen as an “inconvenience” and when she checked with a staff member if anything had been done to clear the bays, she overheard another staff member saying: “Right, I’ve moved one, but I’m not moving the rest.”
They then told her they would need to call someone to remove the others.
Peach was told by one of the Next staff members: “For our sale, a lot of people come so we have to get them to queue outside.”
She said she believed that removing access for disabled customers so that other customers could queue for a sale was discriminatory.
And she said that staff and other customers had walked in and out of the store for three days without questioning the barriers.
She was only able to park at the store in Camberley, Surrey, by waiting for one of the three accessible spaces around the corner of the store to become available.
Although not a wheelchair-user, she needs the extra space provided by accessible bays to get in and out of her car, and to be near the entrance, because of her long-term health conditions.
Peach pointed out that many wheelchair-users would not have been able to enter the store to lodge a complaint because without the extra space provided by an accessible bay, they also would not have been able to get out of their cars.
She told Disability News Service: “At first, I was frustrated and angry.
“I couldn’t believe what I was hearing when staff told me it was all for their sale queue.
“But I also feel hurt and saddened by this.
“It is not the first time I have had to deal with disability discrimination but to see it on such a large scale, out in the open, with no one questioning it – that really upset me.
“I was made to feel like an inconvenience and not as important as someone who is not disabled.
“I also worry for other disabled people who will have experienced this and not been able to speak up about it.”
She said that staff at the same store about a year ago had hung the emergency pull cord out of reach in the accessible toilet because customers kept pulling it, thinking it was the light.
A Next spokesperson said that the spaces were cordoned off for three days, from midday on Friday to midday on Monday.
She said Next had “written to the customer and apologised, and do of course apologise to any customers who were unable to find free parking during this time”.
She said the decision to cordon off “a small number of disabled and non disabled parking bays” had been taken after speaking to both the store and area managers, “in order to accommodate an anticipated substantial queue”.
She said that a “thorough risk assessment” had been carried out “to ensure customers avoided queueing in nearby roads and to comply with COVID and health and safely regulations”.
She added: “This was only for a short period of time and the site ensured there were still six disabled spaces available for Camberley customers [Peach insists this number is wrong and there were just three], throughout this time.
“However, in view of all of the above, it is clear that we need to consider the needs of all our customers going forward.”
She said the concerns had “fully been taken on board”, while the carpark was now “back to full capacity”.
15 July 2021
Government announces fresh set of exemptions from transport access laws
Parts of the rail, bus and coach industries are likely to be able to continue to use inaccessible vehicles for years to come, after a “worrying” government announcement that it was planning a fresh series of exemptions from transport access laws.
The exemptions discussed in a letter from transport minister Baroness Vere relate to buses and coaches used to provide home-to-school services for disabled students, and those used as replacement vehicles when rail services are disrupted.
The Public Services Vehicle Accessibility Regulations (PSVAR), introduced more than two decades ago, mean that all such vehicles should have complied with the regulations by 31 December 2019.
But because of the industry’s failure to prepare for that date in advance by ensuring that it would have suitable access to accessible vehicles, ministers have had to issue a series of temporary exemptions.
They have already handed providers four temporary exemptions that mean train operating companies are still allowed to use older buses and coaches for rail replacement purposes, even if those vehicles do not comply with PSVAR.
Other exemptions have been offered to those providing home-to-school services, including local councils and schools.
Now Baroness Vere, the minister for roads, buses and places, has written to industry chief executives to tell them the government is planning to offer further exemptions.
She told them PSVAR had “revolutionised disabled people’s access to local buses and long-distance coaches” and that it was “unacceptable that, two decades after their introduction, a lack of compliant coaches continues to prevent disabled school pupils and railway passengers from travelling on the same services as non-disabled people”.
She added: “It cannot be right that in 2021 disabled people can still be required to use segregated services regardless of their wish, or otherwise, to do so, and I am determined that this will change.”
She said that local authorities, schools, colleges and transport operators “must focus now on how they can provide services inclusively rather than seeking to avoid their legal obligations”.
But she claimed that continuing exemptions “cannot be avoided until there are sufficient compliant vehicles to meet demand” and that she had asked Department for Transport (DfT) officials to develop plans for new “medium term exemptions” to begin from next year, which will likely focus on measures relating to wheelchair accessibility of buses and coaches.
These measures appear to apply to home to school services, but the minister said that arrangements for rail replacement exemptions would be passed to train operating companies through the Rail Delivery Group industry body.
She claimed the exemptions were “essential to enable vital services to run” but “must not be used as a licence to discriminate”.
Disabled campaigner Doug Paulley, who has played a key role in holding the industry and ministers to account over PSVAR, said he was particularly concerned over the possible “medium term” exemptions and the “worrying” lack of details, while he said ministers were yet again “moving the goalposts”.
In her letter, Baroness Vere said the government was also considering extending PSVAR to vehicles used for private hire work, and preventing companies from removing wheelchair lifts from coaches that are no longer being used for scheduled services.
Paulley said the Labour government had promised to examine extending PSVAR to private hire coaches more than 20 years ago, and successive governments had failed to act, so he did not “hold out much hope that this current government will do anything useful on this”.
DfT said that the government’s national bus strategy, Bus Back Better, had promised to review PSVAR by the end of 2023, and that this work would be informed by regular engagement with the disabled persons transport advisory committee (DPTAC) and a broad range of other stakeholders.
The department also said there were too few PSVAR-compliant coaches to provide one for every home-to-school service, but the medium-term exemptions could be designed to incentivise the use of compliant vehicles.
Those medium-term exemptions will be subject to consultation before coming into force, the department said.
And it said that any further exemptions for rail replacement services would be considered in due course.
A DFT spokesperson said in a statement: “Disabled people should be able to travel as easily and confidently as everyone else, and ensuring vehicles comply with these regulations is an important step in making that possible.
“These temporary exemptions will ensure that vital home-to-school services can continue, but operators must take steps to comply with PSVAR and may not be eligible for exemptions in future if they cannot show their efforts to do so.”
15 July 2021
News provided by John Pring at www.disabilitynewsservice.com
