Disabled people who use direct payments to pay for support in their own homes are using this control over their care to stay safer during the coronavirus pandemic than if they were in institutions, early evidence suggests.
Disability News Service (DNS) has spoken this week to six organisations – four of them user-led – that support disabled people who use direct payments to pay for their own personal assistants (PAs).
Taken together, they are in touch with thousands of disabled people on direct payments.
And their experience so far suggests that the use of direct payments, which gives disabled people control over their own support, has ensured that they and their PAs are mostly being able to take precautions to protect themselves from COVID-19 infection.
This early evidence – although the conclusions are only tentative and based on a small sample – contrasts with increasing concerns over the number of deaths in care homes across the UK due to COVID-19.
Despite this evidence, the organisations DNS has spoken to have stressed that employers of PAs are still facing significant difficulties in obtaining the personal protective equipment (PPE) they need to keep them and their PAs safe, and in securing testing for the virus when they, their PAs or their families show possible COVID-19 symptoms.
Dr Victoria Armstrong, chief executive of Disability North*, a user-led organisation based in Newcastle, said that those users of direct payments who were “confident employers” and have had the support of their social worker and organisations such as hers appeared to have coped well with the pandemic so far.
In general, she said, people receiving direct payments appeared to be staying safer than disabled and older people in care homes, because they have been more able to control their support and ensure their own safety.
But she stressed that there were PA employers in the area who had not been in touch with her organisation, and they could be struggling to cope with the pandemic.
And she said there were significant concerns over the provision of PPE.
The situation has been complicated by Newcastle City Council’s decision to go ahead with transferring the direct payments support service from Disability North to the controversial outsourcing company People Plus – which won the contract through a tendering process – tomorrow (Friday).
Because of the council’s failure to ensure people on direct payments were able to secure the PPE they needed promptly, Disability North set up – without any additional council funding – a system in which employers of PAs who needed PPE could collect supplies provided by the council from outside DN’s offices.
But the council has now turned down a proposal from Disability North to continue that service after tomorrow, when the local authority will organise deliveries of supplies of PPE itself.
Armstrong said the council’s organisation of PPE supplies for employers of PAs had been poor and, as a result, many disabled people felt like an “afterthought”.
She said she was concerned that some disabled people in the area might now find it difficult to secure the equipment they need to keep safe.
A Newcastle City Council spokesperson praised Disability North for its support of people on direct payments, and its support through the pandemic.
He said People Plus was “experienced at delivering high quality direct payment support services”.
And he said the council had been working with local partners to ensure PPE was available across Newcastle to those who need it, including care homes, front-line social workers and those using direct payments.
He said: “We are extremely grateful for the support that Disability North have provided with the distribution of this essential equipment and are now in a position to set up our own arrangements which will speed up the distribution process to vulnerable people.”
Geraldine Des Moulins, chief officer of the disabled people’s organisation Possability People, in Brighton, said: “We haven’t heard of any deaths [of people on direct payments], we haven’t heard anything like that at all.”
She said her biggest concern currently was about the long-term impact of the crisis on disabled people, including those on direct payments.
Any government moves to ease the lockdown are unlikely to change the day-to-day experiences of many disabled people who will still need to continue sheltering at home, she said.
“They are still going to be in lockdown. My main fear is mental health and general wellbeing.
“There is still a lot of fear out there about what next, what happens now.”
Her organisation is now thinking about how to help disabled people with their resilience and self-confidence in the longer-term, and ensure they remain both safe and engaged with the community.
She added: “This is going to affect disabled people for a long time yet. It is the long term that is the biggest worry currently.”
Possability People is among those organisations who pointed this week to the poor and confusing official information about PPE, such as gloves, masks and gowns, and the continuing difficulty of obtaining it.
Des Moulins said: “If you’re on direct payments, you’re more or less on your own to sort things out.”
Kimberly Myhill, senior development officer with the user-led organisation Equal Lives, which is based in Norwich, said it was a “new and rapidly changing situation” and it would be “some time before any robust research can ascertain the levels of safety”.
But she said Equal Lives knew of deaths in care homes in Suffolk linked to coronavirus, while she was not aware of any of its service-users on direct payments who had died because of the virus.
She said that most of the people on direct payments that Equal Lives supports in Suffolk were choosing to stay at home and isolate with their families, rather than continuing to use their PAs.
For safety reasons, many are using their funding to pay their relatives for their support, thanks to new flexibilities confirmed in last week’s long-awaited government guidance for those on direct payments.
But those who are still using PAs are having to cope with staff coming into their homes without PPE, she warned.
Myhill said that those receiving direct payments through the NHS “appear to have had a better level of support than those who deal with the local authority, maybe due to the NHS having more of an understanding of infection control”.
Tracey Jannaway, director of Independent Living Alternatives, the social enterprise founded by the independent living pioneer David Morris, said key issues included how early disabled people had gone into lockdown and how well they had been able to shield.
She said many PA-users “had begun shielding and isolating before the official lockdown date and have been able to minimise their teams of PAs in order to reduce risk if not eliminate it”.
But she said she was “wary of saying simply that residential care has it worse that people in the community” as there have been “examples of really good practice in the residential sector”.
She also said there had been much confusion, misinformation and changing information around the use of PPE, and “a lot of confusion over shielding and isolating”.
Mike Adams is chief executive of Purple, which supports about 4,500 disabled people on direct payments, who in turn employ just under 7,000 PAs, across local authorities in Essex, Oxfordshire, Cambridgeshire and Leicestershire, and nine clinical commissioning groups.
He said: “We certainly haven’t heard anecdotally of any cases where either service-users have passed away or [there has been] a spike in the numbers of people going into hospital.”
Asked if he thought disabled people on direct payments could be safer than those in care homes, he said: “I think there’s something to it.”
But he said the challenges faced by disabled people on direct payments had received scant attention from the media.
And Adams said there had been an initial fall of about 10 per cent in the number of hours of support people on direct payments were using, which was probably due to them deciding to self-isolate and PAs deciding to stop working because of the COVID-19 risk.
He said that the “detrimental impact” of this fall in support and of the isolation were a “hidden cost” of the pandemic that had yet to surface, although it was not clear whether some of the fall in support had been replaced by care from family members.
Although some disabled people and PAs have reported COVID-19 symptoms, he said, because of the difficulties in obtaining testing there was no way of knowing how many have been infected.
He said there was “clearly a need” for disabled people and their PAs to have access to testing, and to the PPE they need to stay safe.
John Evans*, a pioneer of the independent living movement and now facing the twin challenges of terminal cancer and adapting to the COVID-19 pandemic, said he had not heard any “worrying stories” from any of the many PA users he knows.
He has arranged shifts so there are fewer changeovers between his PAs, and he does not allow them to shop for him because supermarkets are “high risk” areas.
He has had help with shopping from an “amazing” local support group, after he was unable to book any supermarket delivery slots.
He said: “In terms of all the PA users I know, they are all managing in similar ways and as yet I have not heard any worrying stories. Let’s hope it continues.”
Evans, who lives in Hampshire, said that his continuing healthcare personal health budgets team had been “really helpful” in securing access to PPE, including providing a 10 per cent increase in funding to pay for masks, gloves and gowns.
He partly attributes this success to a co-production group that has been running for about 18 months, which includes him and three other users of direct payments, and has helped devise the team’s policies and protocols.
Gerry Zarb, from the user-led Spectrum Centre for Independent Living, in Southampton, said they also were “coping fairly well”, although receiving increasing numbers of calls from people on direct payments on issues such as food deliveries and their own mental distress, while some Spectrum staff had had to cope with their own PAs self-isolating.
He said Spectrum’s PA agency was still running, although its supplies of PPE were running low and it was becoming difficult to replenish them.
He said: “Fortunately we haven’t had much sickness yet but it’s always on your mind that this could happen at any time.”
*He has written a blog for the Social Care Institute of Excellence on how to support people with long-term health conditions who are self-isolating in their own homes
**Disabled people in the north of England, from the Tees Valley up to Northumberland and across to Cumbria, can call or email Disability North for advice through its new community care project
***Possability People and Disability North are both DNS subscribers
****Links to sources of information and support during the coronavirus pandemic include the following:
30 April 2020
Eight local authorities in England have become the first to take advantage of new emergency powers that allow them to reduce their duties under the Care Act.
One of the councils – Solihull – has become the first to admit that it is cutting the packages of some service-users as a result of pressures imposed by the coronavirus pandemic.
Four of the other local authorities – Warwickshire County Council, Middlesbrough Council, Staffordshire County Council and Birmingham City Council – have made changes to how they approach assessments, support plans and annual reviews.
They have described these changes as delaying, deferring and streamlining the vital work they would normally do in these areas.
The sixth council – Sunderland City Council – has refused to say what measures it has taken under what is known as the Care Act “easements”.
The identities of two other councils that are taking advantage of the easements – Derbyshire County Council and Coventry City Council – emerged late yesterday (Wednesday) in a letter (PDF) from the Department of Health and Social Care to legal firm Bindmans.
The emergency powers were introduced as part of the government’s Coronavirus Act, and mean councils – if they need to take advantage of the easements – no longer have to carry out detailed assessments of disabled people’s care and support needs, and no longer have a legal duty to meet all eligible care and support needs.
Solihull council said the pandemic had “created additional demand for care and support services in Solihull as a result of its impact on the people we support and because many staff are unable to work due to illness or self-isolation”.
It said it would “use the capacity available to ensure that those who need support most continue to receive it” but that it had “reduced support for some people”.
The council later explained that this had affected 41 people who had been receiving “low level care and support.
A spokesperson said: “To make these changes we have contacted people individually to discuss if alternative support is possible, for example where family members can help or using volunteers to help with tasks eg shopping or cleaning.
“If alternatives are not available their current care has remained in place.
“We are monitoring the situation closely and regularly so that full service can be restored as soon as is reasonably possible.”
Sunderland City Council said it was “looking at easement as part of prudent planning measures”, but a spokesperson refused to answer any questions about the measures it had taken, including what they would mean for disabled people in the city
Birmingham City Council said the only changes its councillors had agreed so far was to streamline assessments, and it insisted that there “will be no change to the services received by existing service users as a result of this decision”.
Earlier this month, Disability News Service (DNS) reported that Warwickshire County Council had apparently started taking advantage of the new powers even before they became law on 31 March.
Evidence seen by DNS suggested that the council took a decision to halt all the “usual work” being carried out by its social workers nearly a week before the measures took legal effect.
This week, the council said it was carrying out “focussed” and “streamlined” assessments, focussing “on the here and now to meet people’s needs during the epidemic” and recording “just enough information to make sure people are safe and well now and their carers can continue to provide support”.
It is also streamlining support plans, so they are “less detailed but will have the information people and their support providers need”, and it has suspended annual planned reviews.
But the council insisted that it had “not taken any decisions to reduce the level of support provided to its social care customers”.
Middlesbrough Council said it had originally decided to “temporarily delay some scheduled reviews to ensure the sustainability of hospital discharge and other key functions”.
This lasted only eight days, until 22 April, and only affected people awaiting scheduled reviews of their care packages.
Staffordshire County Council said it would only use the new powers “if absolutely necessary” and to enable the council “to maintain care for people at higher risk”.
So far, it has deferred “a very small number of people’s full Care Act assessments”, affecting both new and existing service-users.
But a spokesperson said that, after its staffing capacity improved, it has now been able to “start to do full assessments and reviews again where capacity allows”, although it has retained the power to use the powers again if necessary.
Svetlana Kotova, director of campaigns and justice for Inclusion London, speaking before the two latest councils were added to the list, said: “We are extremely concerned that the six councils rushed to free themselves from their duties under the Care Act.
“This will have severe consequences for disabled people as their legal rights have been suspended.
“Consequently, disabled people will be at risk of not getting the support they need, and it will be tough to challenge this.
“We understand local authorities are in a difficult position, and that implementing the easements may seem like an easy solution.
“However, several councils have chosen a different approach by working with disabled people to put contingency plans and support in place.
“Moreover, many of those local authorities are in London – the area hit hardest by coronavirus.
“It is vital, therefore, that there is openness, transparency and accountability and that the decision of these local authorities to undertake easements is made public.”
Disability Rights UK (DR UK) also raised concerns about the councils’ actions.
DR UK’s Sue Bott, also referring to the original six councils, said: “It’s deeply troubling that these local authorities have taken this decision with no regard to the national guidance from the Department of Health and Social Care which sets out a clear process that should be undertaken and would appear not to have been followed in these cases.”
Lord Bethell, a Tory whip in the House of Lords, told peers last week, after confirming the names of the six local authorities, that the decisions taken by the councils to take advantage of the Care Act “easements” did not “necessarily mean that they are in crisis”.
But he also said that those measures should be used “only when absolutely necessary”.
*Links to sources of information and support during the coronavirus pandemic include the following:
30 April 2020
More than 150 Deaf people have begun a legal class action against the UK government over its failure to provide a British Sign Language (BSL) interpreter at its televised daily coronavirus briefings.
They are seeking damages from the government – and a written apology – because they say it has discriminated against them under the Equality Act.
They also want the government to promise to provide an interpreter at all the future televised coronavirus briefings.
It is the second such mass legal action linked to the country’s response to the pandemic that has been launched this month by solicitors at discrimination experts Fry Law and barristers at Cloisters chambers.
Last week, Disability News Service (DNS) reported that more than 200 disabled people had signed up for a class action against UK supermarkets over allegations that they have discriminated against them during the coronavirus crisis.
Now at least 155 BSL-users are seeking damages* from the government for breaching the Equality Act by failing to provide an interpreter for nine separate daily briefings by prime minister Boris Johnson at the beginning of the pandemic crisis, between 3 and 19 March.
These first few televised briefings provided vital information to the public, including informing them that they should avoid pubs and restaurants, that schools were closing, and advising them how to protect themselves from the virus.
Their lawyers have been in discussions with government advisers for weeks but have decided to launch the case after failing to make significant progress.
Chris Fry, founder of Fry Law, said: “This really matters to people. There are 87,000 people for whom BSL is their first language.
“It is just not acceptable that their needs are ignored.”
He added: “Up until the supermarket issue, this kind of thing had never happened before, and what we are seeing is people prepared to stand up for themselves, because I suppose they are backed into a corner in a way that hasn’t happened in a generation.
“People are standing up for themselves and they are working as a community to try and achieve change.”
Campaigners are also crowdfunding for a second legal action, which – if they raise the necessary funds – will seek a judicial review of the government’s decision not to provide an interpreter at the briefings, which they say has breached the Equality Act, the Human Rights Act and the UN disability convention.
The judicial review action has been backed by more than 20 organisations, including the Royal Association for Deaf People, the National Union of British Sign Language Interpreters, the UK Council on Deafness and Disabled People Against Cuts.
Fry Law has been told by the government that, because of the need for social distancing, there is no space for an interpreter behind the senior ministers and other government figures who deliver the briefings.
But Fry said: “Our message to Downing Street is that we would like to be involved in sitting down and trying to sort this out.
“We have got a fantastic group of campaigners who would like nothing more than to sit down and explain why this is so important.
“Sorting this out would not be expensive.”
He said the damages case was being taken because Downing Street’s response to the judicial review had been seen as “dismissive”.
The legal actions stem from a campaign launched by BSL-user Lynn Stewart-Taylor, who noticed the absence of an interpreter at the 5pm government briefings and realised that she and other Deaf people were being deprived of “urgent” and “critical” information that could help them stay safe.
She first noticed the absence of an interpreter on 9 March, when she launched the #WhereIsTheInterpreter hashtag on Twitter.
She has sent Twitter messages every day to the prime minister and other ministers but has yet to receive a response.
The BBC has since introduced an interpreter for the briefings, but only on its news channel, while its BSL translation is not shared by other broadcasters and does not appear in clips on social media.
Campaigners point out that many other countries around the world, including Wales, Scotland, Ireland, Norway, France, Japan, Italy and New Zealand, have all been able to provide an interpreter for their coronavirus briefings.
Stewart-Taylor, a consultant, researcher and writer, said she felt that BSL-users were being treated like “second class citizens” by the UK government.
She told DNS: “Other countries are listening and have taken action to do their duty, so why can’t they? Is it that difficult?
“Do we matter? Obviously not!”
She added: “The challenge of not having an interpreter means that the deaf community are not getting access to this vital information at the same time as hearing people.
“This is putting us at an extreme disadvantage and potentially putting us and those around us at risk.”
A Downing Street spokesperson said: “We are not going to comment on ongoing legal proceedings.
“It is vital that public health information reaches everyone across the country, which is why we have reissued guidance to every government department reminding them that all their communications must be fully accessible, to ensure they reach everyone in appropriate, inclusive formats.
“We have established BSL interpretation at the daily No 10 press conference via the BBC News Channel and iPlayer, available on all TV packages as part of Freeview, and are working to ensure greater replication of this signed interpretation across a wider range of media channels.”
*To request to join the “no win no fee” legal action, fill in this form, which can be done using the SignVideo service
**Links to sources of information and support during the coronavirus pandemic include the following:
30 April 2020
People with chronic illness face hostility and isolation because of society’s failure to understand how their impairment affects their lives, according to the results of a ground-breaking piece of user-led research.
The research concluded that the most “fundamental oppression” experienced by people with conditions such as ME, multiple sclerosis, fibromyalgia and Ehlers-Danlos syndrome was the “negative attitudes” they faced.
More than 80 per cent of the more than 2,000 people with chronic illness who took part in a survey for the research believed there was a denial and disbelief about the fatigue they experienced.
The Energy Impairment and Disability Inclusion report (PDF) found that those who challenged this oppression by identifying as disabled people found the experience “liberating”.
The main sources of oppressive attitudes were interactions with Department for Work and Pensions staff – particularly in relation to personal independence payment – and healthcare professionals.
Understanding that the “disbelief and invalidation” they face is a disabling barrier is crucial to developing a social model of chronic illness, the report suggests.
One participant in a focus group organised by the researchers said they felt “a kind of weird, ambient hostility… the feeling that wherever I am, whatever I’m doing, I’m surrounded by people who maybe don’t get it and are liable to think badly of me at any moment”.
Another of those who took part in the research said: “I feel like every day I am battling to prove myself – that I am really this sick, that I am working hard, how exhausted I feel, how difficult things are for me, in order to avoid their judgements.”
The report concludes that the terms “energy limiting chronic illness” (ELCI) and “energy impairment” are acceptable to most people within the chronic illness community as a useful way to describe their lived experience.
The report says that many people with ELCI feel like undeserving frauds because they have “internalised” deeply negative social attitudes.
Despite those questioned through in-depth focus groups finding it liberating to identify as disabled, two-thirds (66 per cent) of survey respondents believed they risked hostility – such as implied disbelief or direct accusations of faking or cheating – if they identified as a disabled person.
And 85 per cent said they felt isolated by society’s failure to understand the impact of their condition.
Although it stresses the importance of using the social model of disability to explain and understand the oppression they face, the report insists that people with an ELCI must also be able to discuss the impact of their own illness on their lives, with nearly two-thirds of the survey respondents saying that better medical treatment would have the most impact on improving their quality of life.
Its authors say their research now provides a framework for building more effective advocacy for people with an ELCI “alongside and within the disabled people’s movement”.
They add: “We must now find a way to deepen this dialogue and continue this work.”
The report says there is “compelling” evidence that the views of people with chronic illness are rarely heard outside supportive online networks.
And it calls for funding to set up a new, user-led organisation that is run and controlled by people with energy limiting chronic illness.
The report – published by the Centre for Welfare Reform and funded by the user-led Disability Research on Independent Living and Learning (DRILL) programme – is based on the views of 2,300 people with chronic illness who took part in the research, which lasted from April 2017 to December 2019.
Catherine Hale, the report’s lead author*, said the coronavirus pandemic had shown that society “can radically adapt when it is forced to”.
She said: “For the first time in history, the vast majority of people in the UK have been forced to stay at home; an experience people like me are used to.
“Once we’re out of lockdown, I hope the changes that we’ve seen to support everyone – at work, in the community and at home as a result of coronavirus – stay in place for disabled people.”
The report is the latest piece of research to come out of the five-year, £5 million DRILL research programme, which is funded by the National Lottery Community Fund, and delivered by DR UK, Disability Action (in Northern Ireland), Inclusion Scotland and Disability Wales.
It is believed to be the world’s first major research programme led by disabled people, and it should eventually fund about 40 pieces of research and pilot projects across the UK, aiming to build evidence on enabling disabled people to achieve independent living
*The other authors were Stef Benstead, Jenny Lyus, Evan Odell and Anna Ruddock
30 April 2020
Ministers have failed for more than a year to publish a report they commissioned into the barriers facing disabled people who want to achieve elected office.
The report by two leading academics includes a series of recommendations on how to tackle and reduce the barriers disabled people face when trying to become local councillors and MPs.
The government’s failure to publish the document will add to concerns that ministers have no interest in reducing those barriers and increasing the number of disabled politicians.
Disability News Service (DNS) has learned that the report, co-authored by Dr Elizabeth Evans, of Goldsmiths, University of London, and Dr Stefanie Reher, of the University of Strathclyde, was delivered to the Government Equalities Office (GEO) in April 2019.
The government has so far failed to publish the report, which is believed to contain damning evidence about the barriers facing disabled politicians.
In an email sent earlier this month to Mary Griffiths-Clarke, a disabled politician who fought the north Wales seat of Arfon for Labour at the 2017 general election, Evans said: “To update you on the progress of the report – we submitted it to the GEO last April and we have been waiting since then (!) for them to publish it.
“Obviously things got delayed with Brexit, the election and now Covid-19.”
When it first announced that Evans and Reher had been commissioned to carry out the research, Goldsmiths said they would be interviewing disabled candidates, activists and elected politicians across all parties, as well as independents.
After being contacted by DNS, GEO and Dr Evans said the report was a draft version and that they had continued to work on it after April, and that its publication was delayed by December’s general election.
Only two months ago, DNS learned that successive chairs of the Conservative party snubbed a request from their own equalities minister, after she asked them to explain how they intended to support more disabled people to become MPs and councillors.
And earlier this month, DNS revealed that GEO had permanently closed the temporary EnAble fund that was set up – following the closure of the short-lived Access to Elected Office fund – to support disabled people with the extra costs they faced in running for office.
Griffiths-Clarke said there was “no excuse” for the delay in publishing the report, which showed that empowering disabled candidates was “not a priority”.
She said: “If the report does indeed contain damming evidence of systemic barriers such as lack of adjustments and bullying of disabled candidates, why not do something about it?
“If the government is genuinely serious about tackling barriers to public office and to empower a diverse range of candidates to become elected representatives, so parliament is reflective of society, then they need to be taking action.
“Sadly, by looking at what is being done as opposed to what is being promised, the UK has a long way to go before barriers to inclusion are removed for disabled people.
“Without supporting more disabled people to become candidates and empowering them to win at the ballot box, disability will never be truly understood in parliament.”
She added: “From the abolition of Access to Elected Office to the stubborn refusal to publish this report and take action on the many barriers faced by disabled politicians and activists, it reveals the government and political parties are in charge of the biggest barrier of all: that disabled people are viewed with contempt and [as being] incapable of becoming leaders, therefore they are not worth the investment.
“Whilst disability continues to be perceived as a weakness, not a difference, such barriers will remain.
“This is something that needs to be addressed not just within government but within society, as an electorate.”
Deborah King, co-founder of Disability Politics UK, said: “The delay in ensuring disabled people have better access to elected political office seems deliberate.
“It is as though disabled people are, in the eyes of elected politicians, the least important group to be entitled to get fair representation.”
She said the COVID-19 crisis showed that “different ways of working are possible”, and that if online voting for MPs in the House of Commons – which is currently being tested – was combined with the right to job share in elected political office, more disabled people could become paid politicians.
A GEO spokesperson said the version of the report that was delivered in April 2019 was a “first draft” and that GEO policy officials and academics had continued to work on it until a final version was completed in December.
She said: “The report was commissioned alongside an evaluation of the EnAble Fund, and we intend to publish the two documents in due course.”
She declined to say when the evaluation report on the EnAble Fund was sent to GEO.
In a statement, Evans said: “We presented an early version of the report to the GEO in April 2019.
“Following feedback, we worked on a revised version while awaiting information on a likely publication date.
“We were originally told the completed report would be published in December 2019, but this wasn’t possible because of the pre-election period.
“I’m very grateful to all those who contributed to this research and I am looking forward to sharing the findings with them once the report is published.”
30 April 2020
Disabled people have told MPs how they have been hit particularly hard by the impact of the COVID-19 crisis on the benefits system.
The Commons work and pensions committee carried out a survey of benefit claimants as part of an inquiry into the response of the Department for Work and Pensions (DWP) to the crisis.
The committee said that more than 6,000 individuals and organisations responded to its survey.
Among the nine key findings of an analysis of those responses (PDF), part of its continuing inquiry, the committee said that people claiming sickness and disability benefits “feel particularly hard hit” by the impact of coronavirus, while “some people are still struggling to make ends meet” and others have been unable to claim universal credit.
Three-fifths (63 per cent) of those claiming the out-of-work disability benefit employment and support allowance told the committee that their benefits would not cover their basic living costs, such as rent, food and electricity bills.
And another 23 per cent said they would be able to cover those bills but would have to cut back in other areas to do so.
One disabled person told the committee: “Food and other household goods have gone up in price or I can’t buy the cheaper options I normally get, so the money I get isn’t going far enough.
“I’m having to spend a lot of money on cleaning products and [personal protective equipment] for my carers as I’m in the extremely vulnerable category.”
The decision by ministers to suspend face-to-face assessments for disability benefits, as a result of the pandemic, has caused problems for disabled people whose assessments were cancelled and are now waiting to hear what will happen to their claim.
One said: “Atos have cancelled all face to face PIP assessments for the next three months and are saying they are going carry them out over the phone.
“I still have not heard when my assessment will be and was told by Atos customer service after I had called that they do not know when it will be as they are still ‘sorting it out’.”
Another said: “I sent off the paperwork, which is the precursor to having another assessment, but I have not heard anything back.
“I have read that DWP are stopping all benefits assessments for at least three months but I haven’t heard anything directly relating to my claim.”
Disabled claimants with mental health conditions described to the committee how the introduction of social distancing had made it impossible for them to access the support they needed to complete their benefit applications.
One said: “The DWP have stopped my PIP and my partner’s carers benefit, all because I am still waiting for my doctor to do a letter to them to tell them why I couldn’t go to my face to face medical with Atos health care.
“This is not fair as doctors cannot do letters [when] they are working on the front line with this virus.”
Another told the committee: “Unable to talk to anyone, I’m a veteran, have depression and anxiety and PTSD.
“How am I meant to complete my PIP [personal independence payment] review with no assistance?”
In a separate written submission to the inquiry, Disabled People Against Cuts (DPAC) warns that the “overwhelming pressures” on the universal credit system due to the pandemic crisis means that contacting DWP is now “near impossible”.
DPAC says this is “causing considerable anxiety and distress” and exacerbating people’s pre-existing conditions.
It also says that advice organisations had been forced to restrict their operations, which means many disabled people are now finding it impossible to access the support they need to secure essential benefits.
And it calls for DWP to issue clear guidance to employers to prevent them pressuring disabled staff who are at higher risk from the virus.
DPAC says in its submission: “We have been made aware of numerous cases where disabled people in vulnerable categories have been pressured into putting their lives at risk by going into work during the coronavirus outbreak by employers ranging from construction sites to local authorities.”
It also says that disabled workers have reported problems securing access to workplace adjustments and equipment that would allow them to work from home during the pandemic crisis.
And it highlights the problems that disabled people receiving support through the Access to Work scheme have experienced in contacting DWP for advice on how to respond to the crisis.
Stephen Timms, the Labour MP who chairs the work and pensions committee, said: “Hearing from people with first-hand experience of the benefits system is a crucial part of our scrutiny of the DWP.
“It’s clear from what we’ve heard that DWP staff are working very hard and have made great strides in adapting to the unprecedented strain on the benefits system.
“But we’ve also heard from people who are still facing serious difficulties. Disabled people have been particularly hard hit: their living costs have gone up, but their benefits have stayed the same.
“We hope that ministers will look carefully at what people have told us, and make changes.”
*Links to sources of information and support during the coronavirus pandemic include the following:
30 April 2020
The coronavirus pandemic is “supercharging” the inequalities already faced by disabled people, according to new research by a user-led organisation.
Glasgow Disability Alliance (GDA) has heard from thousands of disabled people over the last month through a survey designed to discover how they have been affected by COVID-19.
GDA said its research showed that two-fifths of disabled people in the city are concerned about food, medication or money; many disabled people have been left short of food after demand caused by the crisis has overwhelmed foodbanks and supermarket deliveries; and more than seven in 10 are worrying about becoming “acutely isolated”.
The also heard that vital information about the pandemic was not reaching disabled people in accessible formats.
Three-quarters (76 per cent) of those who took part in the research said they were not aware of any of the significant support offered by the voluntary sector in response to the crisis, or were unable to access it.
And more than 90 per cent of those who responded said they wanted disabled people’s voices to be heard in decisions about their lives and the response to COVID-19.
GDA concluded that COVID-19 had “supercharged inequalities already faced by Glasgow’s 150,000 disabled people”.
Last month, Glasgow City Health and Social Care Partnership said it was temporarily withdrawing support in their own homes from 1,600 disabled and older people, because of staffing problems caused by COVID-19, and that it was now concentrating on those with critical care needs.
Some service-users were given no notice at all that they were losing their support, while many disabled people have had to rely on neighbours or relatives, or have been left with no-one to meet their personal care needs.
GDA said: “Disabled members of GDA warn this is unacceptable, and far from sustainable, yet many fear their care may never be reinstated.”
Meanwhile, a BBC Disclosure investigation reported this week that thousands of people across Scotland had lost their care and support between January and April this year.
Nearly three-quarters of disabled people told by the government to shield at home during the pandemic crisis have not been able to secure a supermarket home delivery slot when they needed one, new user-led research suggests.
Disabled people in this group have been told they are at high risk from coronavirus, and so are supposed to be given priority for home deliveries.
But of those who responded to a questionnaire devised by the disabled people’s organisation Buckinghamshire Disability Service (BuDS), 74 per cent said they had faced problems.
Ann Hedges, who ran the poll for BuDS, said: “Although this is a relatively small poll, a huge majority of shielded people couldn’t get a home delivery slot.
“This clearly shows that the system is not working as it needs to.
“People with serious health conditions need confidence in the system to keep them safe at home, and that confidence is sadly lacking.”
Andrew Clark, chair of BuDS, said: “There is too much confusion about how the system works, too many conflicting actions and reports, and ultimately people aren’t getting delivery slots or food parcels and are having to rely on local volunteers to keep themselves fed.
“Voluntary support is fantastic, but it can’t last forever.
“If the government is expecting disabled and ill people to isolate themselves for months until a coronavirus vaccine is available, much better and more transparent support arrangements are needed.”
Nearly half of disabled adults (45 per cent) say they are very worried about the impact of COVID-19 on their lives, compared with 30 per cent of non-disabled adults, according to new figures released by the Office for National Statistics (ONS).
The ONS research also shows that nearly two-thirds (65 per cent) of disabled adults said concerns related to COVID-19 were affecting their wellbeing.
But it also shows that disabled adults are slightly more likely to support their local communities, with 65 per cent checking at least once on neighbours who might need help in the past seven days, compared with 63 per cent of non-disabled adults.
*Links to sources of information and support during the coronavirus pandemic include the following:
30 April 2020
News provided by John Pring at www.disabilitynewsservice.com