Government’s pandemic failings have led to ‘bleak picture of marginalisation’
The government’s continuing failure to address the harm caused to disabled people during the pandemic has led to “anxiety and hardship” and a “continuing bleak picture of marginalisation”, according to user-led research.
In a new report, Inclusion London says that “loss of control, social isolation and feelings of dependency” and the “strain of making ends meet” have had a “devastating impact” on disabled people during the crisis.
The report calls for urgent action to address problems such as food poverty, financial difficulties, workplace discrimination, and access to medicine, COVID-19 vaccines and social care.
The Locked Down and Abandoned report – which documents disabled people’s experiences during the pandemic – says the problems have been “compounded” by a failure to engage and listen to disabled people and disabled people’s organisations (DPOs).
While the government insists it is protecting and supporting those in greatest need, it has instead introduced new laws, guidance and policies which have “actively undermined” disabled people’s “ability to protect ourselves and our rights to critical support”, says the report.
Disabled people “are struggling to understand their rights and what they should do and how to keep themselves safe”, with “fast changing, inaccessible and often confusing guidance” increasing their anxiety and distress.
Disabled women and disabled people from minority ethnic groups have been even more disproportionately affected by the pandemic and the measures taken to respond to it, says Inclusion London.
The report draws on results from a UK-wide survey of more than 550 people, as well as focus groups and workshops.
Many of those who took part said they had experienced reduced support due to high levels of staff sickness, cuts to care packages, and increased care charges.
Some saw their in-person support replaced by phone calls or their support hours cut, which stopped them leaving their homes.
Many complained about “inadequate” communication from their local council, with some reporting difficulties in securing advice or even any response at all, while some local authorities increased care charges, pushing disabled people further into poverty “and causing some to stop their care altogether”.
One respondent told Inclusion London last September: “I used to [have] 42 hours of care per week pre lockdown. I now only have one 15 minute telephone call per day.”
Another said last month: “I advocate for several service users, one had all hours removed for going out and was refused [their] request to have them back when lockdown eased.
“Even though she was desperate to get outdoors she could not without help so has been stuck indoors since March 2020, not shielding, but trapped due to so few care hours.”
More than four-fifths (81 per cent) of those who responded said they had experienced problems accessing healthcare.
One of those who responded to the survey said last summer: “I have no support. All promises made before leaving mental health ward have come to nothing other than assessments completed, but no actual practical support.
“I’m terrified and not coping, but no one can help.”
More than a third (37 per cent) of those who responded said they were experiencing employment and financial difficulties because of COVID-19.
And more than a third (36 per cent) said they were finding it difficult to access the community, including a continuing struggle to access food, with most services and support moving online, and changes to the built environment, such as street layouts.
Employers have failed to comply with the Equality Act and have often refused to make reasonable adjustments for disabled staff who are working from home, says the report.
And many disabled people shielding from the virus have been left “without a right to furlough and were pushed to take leave or accept woefully inadequate support” through statutory sick pay.
The high costs of food, medicine and utilities has also pushed disabled people into greater poverty, says Inclusion London.
One disabled person who responded to the survey said: “Society changed overnight and barriers increased hugely from food to PPE [personal protective equipment].
“Things I rely on like gloves and wipes have increased in price x4… There is no pathway through my GP or social services for this. I feel quite abandoned.”
Among its recommendations, the report calls for an independent inquiry to investigate the disproportionately high number of disabled people’s deaths from COVID-19.
And it calls for DPOs to be involved in all COVID-19 planning and recovery work at local, regional and national level.
Inclusion London also calls for urgent increases in social care funding that will enable dignity, choice and control for disabled people, with DPOs “fully involved in developing proposals for the reform of social care”.
And it says there should be “urgent action to ensure social security provides an adequate level of income protection”.
But it warns that its evidence of marginalisation is likely to underestimate its true extent as it has been unable to reach those who do not have access to the internet or are living in institutional settings.
11 February 2021
Secret report casts doubt on DWP’s ‘no duty of care’ claim
The Department for Work and Pensions (DWP) has been unable to explain why its secretary of state continues to insist that it has no legal “duty of care” to disabled benefit claimants, when one of its own secret reports states clearly that it does.
Work and pensions secretary Therese Coffey has repeatedly told MPs that her department does not have a legal duty to “safeguard” its claimants, and that such tasks are instead the responsibility of local agencies such as social services and doctors’ surgeries.
Her repeated denials have come following a decade of distressing cases which have linked DWP’s policies and practices to the deaths of disabled people, particularly those being assessed for employment and support allowance (ESA) and personal independence payment.
Now a secret report, probably completed in 2014, has shown a DWP civil servant discussing the department’s “ongoing Duty of Care” to claimants of incapacity benefit who were being reassessed for ESA.
It recommends a review of DWP’s “ongoing Duty of Care in relation to the identification and support of claimants required to participate in the IBR [incapacity benefit reassessment] Process, who as a result of a [redacted] may be vulnerable and have different or additional support needs.”
It continues: “When defined, the Duty of Care should be brought to the attention of all colleagues including those from Atos* who are involved in the IBR Process…”
The report also warns: “The risk associated with disregarding the possibility that some of these claimants need more support or a different form of engagement is that we fail to recognise more cases like [redacted], with consequent potential impact on the claimant.”
The references to the department’s duty of care are part of a heavily-redacted report written following an investigation by the department into a serious incident – probably a death – involving an IB claimant who was being reassessed for ESA.
The redacted report was one of 49 released to Disability News Service (DNS) by DWP following a protracted freedom of information battle that ended in 2016 with DNS winning an appeal to the information rights tribunal.
Despite the existence of the report, Coffey and her department continue to insist that there is no such legal duty of care.
Last September, Coffey told the Commons work and pensions committee: “I do not think it is the responsibility of DWP to have that statutory care duty.
“We are not the local councils, the social services, the doctors and other people who have that.”
Last week, she repeated the claim, telling the same committee: “We don’t have a statutory duty specifically relating to safeguarding.”
Her department has made the same claim in a freedom of information response to campaigner Amanda Hart, claiming that the “legal position is that there is no legal duty of care on the Secretary of State or her officials in the execution of their statutory duties”.
Last September, disabled campaigner Alison Turner accused Coffey of being “heartless” and “sticking her fingers up to all the families who have lost someone” because of DWP’s actions, after the secretary of state claimed the department had no duty of care.
Turner’s fiancé is the son of Errol Graham, who starved to death after his out-of-work disability benefits were wrongly removed by DWP as a result of flaws in the work capability assessment process.
Turner said at the time that Coffey’s comments explained how Errol Graham and so many other claimants had died over the last decade, and why this “continues to happen to other people”.
She said: “People like Errol have died because of it, because of the department’s lack of care, its lack of concern for people’s safety.”
This week, Labour’s Debbie Abrahams, a member of the work and pensions committee, and the MP who has done most to hold DWP to account for the deaths of benefit claimants, said: “If this peer review report from approximately 2014 says DWP does have a duty of care, when did this change and why?”
She added: “It is quite staggering, given the direct delivery of essential services and vital income to vulnerable social security claimants, that the work and pensions secretary doesn’t believe that her department has a duty of care to these claimants.
“It is unconscionable that this duty isn’t recognised, particularly given the horrific deaths of vulnerable claimants over the last decade, and must be incredibly painful for the families of those who have died.
“But it also makes a mockery of the government’s stated commitment to address the DWP’s failings and ensure vulnerable claimants are identified and protected.”
Asked if Coffey could explain the discrepancy and say whether the position over whether the department has a duty of care had changed since 2012-14, a DWP spokesperson refused to comment.
*At the time, Atos carried out work capability assessments on behalf of DWP
11 February 2021
Disability Unit accused of ‘shameful manipulation’ over disability strategy note
The government has been accused of a “shameful manipulation of reality”, after its Disability Unit sent out desperate emails to its regional disability networks, begging for positive accounts of how its policies have improved disabled people’s lives.
The note was sent out by the government’s Disability Unit to the chairs of its nine regional stakeholder networks across England.
One leading disabled campaigner said this week that the gambit “smacks of desperation”.
The government’s note asks the network chairs: “We are looking for disabled people who would be willing to write up to 100 words about how they have achieved their aspirations, and if there has been a government policy that has supported them to do so.”
It was sent out as this week’s 13 February deadline approaches for disabled people around the country to respond to the government’s national disability survey if they want their response to influence this spring’s planned disability strategy.
Professor Peter Beresford, co-chair of the disabled people’s and service-user network Shaping Our Lives, said the note sent to the network chairs was “a shameful manipulation of reality”.
He said: “Only this government could choose a time when disproportionate numbers of disabled people are dying as a result of its disastrous handling of the COVID-19 pandemic to ask disabled people to send in accounts of their successes to bolster its own appalling record on disability issues.
“Disabled people have faced rising barriers and challenges under this government, not least because of its welfare reform programme and cuts in social care and other services.
“But still, as we see from what we hear from members of Shaping Our Lives, even against these odds, we are still achieving, we are still contributing. But that’s too often in spite of government policy.
“If this government wants the truth then let it commission disabled people to carry out independent research on trends in our life chances.”
Mark Harrison, from the Reclaiming Our Futures Alliance (ROFA), said the Disability Unit’s note “smacks of desperation”.
He said: “The fact that they are writing to the chairs of the networks asking for good news stories suggests to me that the feedback coming from surveys that are being filled out is not what the government wants to hear.
“They are putting a PR gloss on 10 years of grave and systematic violations of disabled people’s rights and retrogression against most of the articles of the UN convention [on the rights of disabled people].”
Fazilet Hadi, head of policy for Disability Rights UK (DR UK), said she was “very concerned” about the note sent to the networks.
She said: “I’m concerned as a strategy isn’t about promoting good news stories, it’s about setting a new ambitious direction.
“Requesting positive stories hints that the strategy isn’t going to be focused on transformational change.
“The disability strategy should be focusing on the transformation of society, so that disabled people can live as equal citizens.
“Whilst an ambitious strategy should be built on whatever positives currently exist, the need for change is massive and has been underlined by the inequalities experienced by disabled people during the coronavirus crisis.
“We need a new legislative framework, funding for disabled people’s organisations, major reforms to social security and social care. These are the areas that the Disability Unit should be asking about.”
Lynne Turnbull, chair of the north-west regional stakeholder network and chief executive of the disabled people’s organisation Disability Positive, confirmed she was among network chairs who received the note from the Disability Unit.
She said it would not be appropriate for her to comment on the note, as chair of the regional network, but she said her organisation was happy to do so.
Jessica Tait, policy and communications manager for Disability Positive (formerly Cheshire Centre for Independent living), said: “As well as the request for stories being short notice, we are concerned that featuring these in the strategy may gloss over the less than positive experiences many disabled people have had with government schemes such as Access to Work.
“Clearly the strategy will recognise that government has the power to make things better for disabled people, but it shouldn’t seek to overstate the government’s previous successes, as this risks undermining the reason a national strategy is so needed.”
The government’s Disability Unit had not responded to a request to comment by noon today (Thursday).
Turnbull said her network has carried out research with nearly 400 disabled people in the north-west and had submitted it to the government to feed into its disability strategy, along with 34 recommendations.
She said that four key themes stood out as important to disabled people in the north-west.
One was the importance of the availability of advocacy to all disabled people who need it, for example to help them with problems with education, health and social care, benefits, housing and the justice system.
Another was to ensure the government increased funding for health and social care.
The third theme was the importance of a benefits system which was “based on need, fully supports the right to live an independent life and supports the idea that a person is disabled by a world that doesn’t meet their needs, not by their condition”, and which provides enough money for a person “to live a full life”.
The final theme was to ensure that “all government information and communication is in plain English, so that it is easy to understand, with easy read, British Sign Language, large print, audio, and braille available if needed”, as well as legal protection for British Sign Language “as a distinct language of the UK, and with an associated culture”.
Meanwhile, ROFA, Disabled People Against Cuts (DPAC) and Inclusion London confirmed this week that they were backing a legal challenge to the survey, and its impact on the strategy, which is being brought by four disabled people.
They say there has been a lack of meaningful engagement with disabled people’s organisations, and disabled people have not been given long enough to respond to the survey if they want to influence the strategy with their answers.
A DPAC spokesperson said that having any future disability strategy drawn up from the survey results “would be a disaster for disabled people”.
She added: “Whole groups of disabled people like those living in residential care homes were just ignored and access for people with a learning difficulty, particularly during a pandemic, was utterly unacceptable.”
11 February 2021
Autistic activist tells MPs of ‘brutal… aggressive… sink or swim’ support system
A disabled activist has told MPs that the government’s failure to replace the broken system of crisis support means sectioning, detention and abuse in assessment and treatment units (ATUs) remains a constant threat to her and other autistic people.
Alexis Quinn described the system as “brutal… aggressive… routine-less, chaotic, sensory-charged warehousing”, which was often situated hundreds of miles from the autistic person’s home.
She appealed to cross-party members of the Commons health and social care committee this week to secure “real change” to a system that is “not fit for purpose”, and so prevent the need for the “retraumatising” and “endless” giving of evidence by survivors of abuse in ATUs.
She called on the government to prioritise community-based services and a “rights-based approach to help people in crisis” and end the privatisation of mental healthcare.
She was giving evidence as part of the committee’s new inquiry into the care received by about 2,000 autistic people and people with learning difficulties in secure inpatient settings, including the forceful use of restraint, seclusion and segregation.
She told the MPs that she had seen no improvement in ATUs since she was last detained about four years ago.
She said: “I don’t think anything’s improved at all and I think it can’t improve.
“The model of care is wrong. It’s reactive, it’s over-medicalised. Let’s remember we are not sick [so] why are we in hospital?”
Quinn told the MPs that “any kind of autistic reaction to a stressful life event… can and too often does result in sectioning” because of the failure to provide any community-based support for autistic people in crisis.
She described her ordeal in ATUs, including “not being treated quite as a human, being told constantly that I need to get better, from what I don’t know” and being “rewarded with star charts and fresh air if I managed to look normal, [but] confined to the indoors if my autisticness, my reaction to the environment, couldn’t be adequately masked that day”.
She also described being transported in cages, handcuffed, with her legs tied together, and being carried like a battering ram.
Asked to reflect on her time in ATUs, she said: “I reflect on closed doors, being hundreds of miles away from home, worried when the next sensory overload would come, triggered by a chaotic, sensory-charged environment that I had no choice to be in.
“I was constantly worried because I was just waiting for the next overload to come.
“It was always met with six to 10 men pinning me to the floor, pulling my pants down and injecting me with sedatives and then secluding me.
“I reflect on the lights that are shone through the window… in the door of the room that I slept in, every hour, and you wouldn’t believe that I missed that for a good few years, being woken up every hour by a torch. You just get so institutionalised.
“And I reflect on really how the system just doesn’t care about autistic people, how it silences you, makes you afraid, and that fear stays with you a long time, even now.”
She also spoke about the “routine criminalising” of autistic people who are charged with assault and criminal damage after “a meltdown” and are merely responding to being locked in a room “for days, weeks, months, years”.
Quinn said the system was “sink or swim” and those who cannot manage in the community have to go to hospital, where they end up being restrained because they are in “the most inappropriate place for autistic people”.
She said restraint was used “to ensure compliance, coercion, and, to be honest, to manage a larger ward environment which is usually understaffed”.
She added: “This isn’t restraint, this is manhandling, it’s abuse, and I think we need to start calling it that.”
11 February 2021
Frustration and anger at Labour’s new ‘tick-box’ roadshow plans
Disabled activists have spoken of their growing frustration and even anger with Labour’s failure to engage properly with user-led organisations, after the party announced a new roadshow aimed at hearing from individual disabled people around the country.
Vicky Foxcroft, Labour’s shadow minister for disabled people, is to hold 11 online events with disabled people across England, Scotland and Wales, starting next Friday (19 February).
The virtual roadshow follows a similar exercise that began five years ago and fed into the party’s 2017 general election manifesto.
But there was anger and frustration with Labour among disabled campaigners who spoke to Disability News Service (DNS) this week, both on and off the record, about the plans.
They fear the new events will be merely a “tick-box exercise” aimed at trying to show that Labour is listening to disabled people, while allowing the party to sidestep proper engagement with representative organisations.
They also pointed to the UN Convention on the Rights of Persons with Disabilities, which makes it clear that governments (although not explicitly opposition parties) must “actively involve” disabled people in developing policies through engaging with disabled people’s organisations (DPOs)*.
In announcing the roadshow, Foxcroft said that it “kickstarts a four-year engagement programme” leading up to the next general election and that she wants to speak to “as many disabled people, charities, disabled [people’s] organisations, unions and other civil society organisations as possible”.
Among those speaking out this week was Ellen Clifford, a member of the steering group of Disabled People Against Cuts (DPAC), who described Labour’s move as “unbelievably arrogant and offensive” after years of work put in by disabled people and DPOs to agree priorities and policy solutions.
Her DPAC colleague Paula Peters said she was “really concerned that it’s a tick-box exercise which will achieve nothing” and will mean the party will be “glossing over real concerns disabled people have and ignoring them”.
Peters pointed to Labour’s continuing failure to speak out on crucial issues affecting disabled people, including the “catastrophic impact of austerity” that has led to the deaths of disabled benefit claimants such as Philippa Day and Jodey Whiting.
Mark Harrison, from the Reclaiming Our Futures Alliance (ROFA), of which DPAC is a member, said he had “serious misgivings” about the roadshow.
He said ROFA, DPAC and others had made clear to Foxcroft, shadow women and equalities secretary Marsha de Cordova and Labour leader Keir Starmer at a meeting in December that “we didn’t need any more roadshows”.
He said: “Disabled people told the Labour party exactly what the issues were when the roadshows happened in 2016 and informed the development of the manifesto in 2017.
“They might need a little updating but what we need is proper co-production with the disability movement and DPOs around good policy-making for, with and by disabled people.”
He added: “They can pick any Tom, Dick and Harry off the street and they will get 1,001 views.
“If they want hundreds and thousands to sprinkle and decorate their cake then that is the way to go.
“If they are serious about implementing disabled people’s human rights in line with the social model and the UN convention they will engage with representative organisations of disabled people.
“The fact that they are going a different way is incredibly frustrating.”
Kathy Bole, co-chair of Disability Labour, agreed with the need for Labour to engage with DPOs.
She said: “While I would always be glad Labour is speaking to disabled people, the term roadshow evokes a bad feeling.
“We don’t need a roadshow, we need a constant dialogue. We need tangible change and it is overdue. We are growing weary of being overlooked time and time again.”
A Labour spokesperson told DNS: “Vicky and Labour are committed to ensuring that disabled people are not left behind as we emerge from the pandemic, and this includes talking to as many disabled people and organisations as possible.
“DPOs have a crucial role to play and we will continue to engage and consult them.
“Our priority is to continue working together to develop our policies to ensure that, when Labour is in government, we will deliver justice and fairness for disabled people after years of the Conservatives having the wrong priorities.”
Although he said that the results of the last roadshow “were written up into the last manifesto, which will be used as part of our policy development”, he had not clarified by noon today (Thursday) whether the notes and results collected from that roadshow would be used.
*The UNCRPD makes it clear that, when developing laws and policies relating to disabled people, governments “must closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations”.
It defines “representative organizations” as those that are “led, directed and governed by persons with disabilities”, a definition which the UN committee on the rights of persons with disabilities included in its general comment number seven, which was adopted in September 2018.
11 February 2021
Foxcroft defends Labour’s near-silence over death of Philippa Day
Labour’s shadow minister for disabled people has been unable to explain why she and her party have stayed almost silent about a young disabled mother whose death was linked by a coroner to fatal flaws in the disability benefits system.
Last month, the coroner highlighted 28 separate “problems” with the administration of the personal independence payment (PIP) system that helped cause the death of 27-year-old Philippa Day, from Nottingham.
The nine-day inquest uncovered multiple failings by both the Department for Work and Pensions (DWP) and its private sector contractor Capita in the 11 months that led up to Philippa’s death in October 2019.
The coroner ended by telling DWP and Capita that he had decided to issue them with prevention of future deaths reports, which will force them to consider how to make changes to the PIP system to prevent further deaths of claimants.
But despite the rarity of such a decision – DWP has received only a handful of such reports from coroners over the last decade – senior Labour figures have remained almost silent.
Backbench Labour MPs like Debbie Abrahams and Nottingham East MP Nadia Whittome have attempted to hold the government to account over the coroner’s lengthy findings.
Abrahams raised Philippa Day’s case in the main Commons chamber this week, the first time that had been done since the inquest ended on 27 January.
She told MPs: “Philippa’s was not the first death of a vulnerable claimant over the past 10 years, and I fear that it will not be the last.
“I am afraid that the response of the work and pensions secretary to my questions on this has not been good enough. There has to be an independent inquiry into these deaths.”
But Disability News Service (DNS) has been unable to find any mention of the party itself or its shadow minister for disabled people, Vicky Foxcroft, speaking out in the wake of the inquest, other than in a brief statement by the shadow work and pensions secretary, Jonathan Reynolds, on the day the coroner delivered his findings.
This statement made no mention of PIP or the coroner’s findings that linked systemic flaws with Philippa Day’s death, and found that these flaws were “the predominant factor and the only acute factor” that led to her death.
The party’s failure to speak out comes as many disabled activists are growing increasingly concerned at Labour’s refusal to speak out on key disability issues, such as the deaths of claimants that have been linked to DWP’s actions.
Paula Peters, a member of the national steering group of Disabled People Against Cuts, told DNS there had been “silence” from Labour on the “catastrophic impact of austerity on disabled people”, such as the deaths of Philippa Day and Jodey Whiting, other than through the efforts of Debbie Abrahams.
She said the party had “forgotten” disabled people and had been silent on the impact of the pandemic and mounting concerns about the government’s forthcoming disability strategy and its planned green paper on disability benefits.
On Monday, DNS asked Foxcroft to explain why Labour had said so little after the inquest, what Labour thinks must be done to address the flawed PIP system, and how Philippa Day’s death adds weight to calls for an independent inquiry into deaths linked to DWP and the benefit system.
Yesterday (Wednesday), she provided the following statement: “The government needs to urgently learn the lessons from the tragic Philippa Day case and the coroner’s verdict.
“This must never happen again and the DWP has to act on the wider failings highlighted in the report.
“Labour has repeatedly raised concerns about PIP assessments and will continue to do so.”
11 February 2021
Clear gap between charities’ words and actions on disabled leaders, says research
There is a clear gap between the “words and actions” of the voluntary sector when it comes to including and recognising disabled people as employees and leaders, according to new research.
The research found that disabled people in senior positions across the sector often felt the need to hide their impairments if they wanted to be accepted as leaders.
And it found that disabled leaders were often frustrated at being “pigeonholed in disability-related roles and organisations”, and at not having the same career options within the sector as non-disabled people.
The low profile of disabled employees across civil society is low, but it is “even lower for disabled leaders in the sector”, says the research.
The two reports were commissioned by the Association of Chief Executives of Voluntary Organisations (ACEVO), and were co-authored by disabled activist Zara Todd – former chair of Inclusion London – and researcher Ellie Munro.
ACEVO had commissioned the two reports – Hidden Leaders and Accessing Leadership – in recognition that it should do more to help create a more disability-inclusive civil society sector.
ACEVO’s own data from 2019 showed that none of its 15 staff or 11 trustees identified as disabled people.
As part of the research, Todd carried out 10 in-depth interviews, with “numerous interviewees [speaking] of disability inclusion within civil society as aspired to but rarely delivered”.
One disabled leader told her: “You end up being typecast as to where you are and where you should be as a disabled CEO.
“At the start of my career I looked outside the disability space for work but didn’t get anywhere.
“As a disabled leader you are not seen as a whole person.”
Another told her: “I have powered through inaccessibility to make it seem like there’s no problem, masking and accommodating inaccessibility to the detriment of my own well-being.”
Todd and Munro said they struggled to find any disabled leaders in civil society who were not associated with work on disability.
They said: “The consequences of disclosure in the sector as it currently stands leave many disabled leaders feeling pigeonholed or trapped in working for organisations related to their identity.
“A number of our interviewees identified not being taken seriously outside of the disability space and not having their skills as leaders valued or recognised.”
They also found that disabled leaders are “rarely asked to talk about innovation, people management or managing governance structures” but instead they are asked to focus on “storytelling and talking about the barriers and solutions to the sector’s and society’s issues around diversity”.
The research also found that, of the 25 largest charities (by annual income), 10 of them did not mention disabled staff at all in their annual reports.
Of those 10, nine were members of the government’s much-criticised Disability Confident scheme, which is supposed to encourage employers to “think differently about disability and take action to improve how they recruit, retain and develop disabled people”.
Among the recommendations in Hidden Leaders are for charities to ensure they have “clear information available for staff around reasonable adjustments and the Access to Work programme”, and for larger organisations to collect disability data about their staff.
It also calls for charities to make it clear that they follow the social or human rights models of disability; to conduct reviews to ensure that all their policies and procedures are “anti-oppressive, non-exploitative and supportive of disabled people”; and to run events aimed at disabled people with additional protected characteristics, such as disabled people of colour or disabled women.
Among their recommendations for ACEVO, Todd and Munro say the organisation should create a network for grassroots leaders from marginalised backgrounds; and provide templates so member organisations can develop their own access and inclusion manifestos, and capture disability workforce data.
They also say ACEVO should co-produce materials with user-led organisations to help the sector and society “understand the difference between user-led organisations and ‘organisations for’ disabled people”.
Todd told Disability News Service: “One of the things that surprised me the most during the evidence gathering was how little the wider sector knows about the disability movement.
“Hopefully, by ACEVO championing the inclusion of disabled leaders, their talent and hard work will get the wider acknowledgement it deserves.”
11 February 2021
Post-COVID Scottish government ‘must look to rights and co-production’
Planning for a post-COVID Scotland must include a commitment to incorporate the UN disability convention into law, and fully involve disabled people’s organisations (DPOs), according to a leading Scottish DPO.
Announcing its own manifesto for the upcoming elections to the Scottish parliament, Inclusion Scotland said disabled people wanted to “go forwards to a more inclusive future”.
Its Rights and Renewal manifesto focuses on five key areas: incorporating the UN Convention on the Rights of Persons with Disabilities into Scottish law; social care; equal access to education and jobs; using the Scottish government’s new social security powers to reduce the number of disabled people in poverty; and involving DPOs in decision- and policy-making.
One of the disabled people who spoke to Inclusion Scotland as it was drawing up its manifesto said: “I can see clearly that, as a disabled person, I count even less and have no rights compared to before COVID-19.”
Others spoke of cuts to social care, with one saying: “I have gone from 20 hours of care to zero. I am now bedbound completely because of this.”
Another spoke of how the pandemic had impacted disabled people in Scotland, saying that “inaccessible systems and processes were put in place without consulting disabled people”.
Among the policies Inclusion Scotland wants to see introduced by the next Scottish government is a new national social care support service “that recognises that social care support is a basic right and fundamental to participative citizenship, with a set of universal criteria coproduced with disabled people”.
It also wants to see the Scottish government use its devolved powers to top-up social security payments for families with one or more disabled parents or disabled children.
Inclusion Scotland’s chief executive, Dr Sally Witcher, said: “Disabled people have told us about the problems they face daily, both before and as a result of COVID-19, and what needs to change.
“Before COVID-19, disabled people were already some of the most marginalised and excluded in society.
“We were more likely to live in poverty, be unemployed or earn less than non-disabled people, and less likely to leave school with qualifications, because of the barriers and exclusion we face in our day-to-day lives.
“The COVID-19 crisis and responses to it highlighted this, aggravating existing inequalities and generating new ones, and putting the human rights of disabled people at further risk.
“Going back to the way things were before is not the answer. We don’t want to go back. We want to go forwards to a more inclusive future.”
Meanwhile, Inclusion Scotland has responded to a Scottish government consultation on draft regulations for adult disability payment (ADP), the new Scottish benefit that will replace personal independence payment (PIP).
ADP will be introduced for working-age disabled people in Scotland from spring 2022, for new claimants, with existing PIP claims gradually transferred from the Department for Work and Pensions to the new Social Security Scotland (SSS) agency.
In its briefing on the consultation, Inclusion Scotland said it believed there were currently 10 positive aspects to the new benefit, but also six areas where it had concerns.
Among the positive changes are that claimants whose award is reduced or stopped will be able to continue to receive the previous amount until the end of any reconsideration or appeal against the decision.
Another, it says, is that the much-criticised PIP assessment will be scrapped, with most decisions made using existing supporting information, such as GP records and social work reports, and “consultations” only carried out where they are the only way to obtain the information needed to make a decision.
But among Inclusion Scotland’s concerns is the decision to keep PIP’s rule which says that a claimant must be affected by their impairment on at least half the days in a month to be awarded points for a particular descriptor.
It is also concerned that the Scottish government plans to keep the controversial 20 metres rule that was introduced through PIP.
Disabled campaigners repeatedly warned in the years after PIP was introduced in 2013 that the decision to tighten a key eligibility criterion for the enhanced mobility rate – and therefore qualify for a Motability vehicle – from being able to walk less than 50 metres under disability living allowance to 20 metres under PIP had a significant and serious impact on disabled people’s independence.
Inclusion Scotland said it was also concerned that, according to the draft regulations, anyone with at least two years’ experience of health or social care work would be “qualified” to carry out an ADP assessment for SSS.
It said this could mean that “someone with no health qualifications and who has only been employed in relatively unskilled social care work for two years could be used… to carry out assessments”.
The ADP consultation closes on 15 March.
11 February 2021
Planning failure ‘meant government had to start shielding scheme from scratch’
The government’s failure to prepare for disabled people needing to shield from a pandemic meant they had to develop a shielding scheme from scratch at the beginning of the COVID-19 crisis, the spending watchdog has found.
In a new report, the National Audit Office is broadly supportive of the government’s efforts to set up the shielding programme at the start of the pandemic for those in England who were considered clinically extremely vulnerable (CEV) to the virus.
The report says the programme was “a swift government-wide response to protect clinically extremely vulnerable people against COVID-19”.
But it points out that the government was forced to develop the scheme “from scratch” because an exercise commissioned by the Department of Health and Social Care (DHSC) in 2016 to assess the UK’s preparedness for an influenza pandemic – codenamed Exercise Cygnus – did not consider how to identify and shield CEV people.
The government first told CEV people to shield themselves on 22 March 2020, and it developed a scheme to provide food, medicines and basic care to those who were shielding.
But the report says there was no way to quickly identify all those who needed to shield, largely because of the challenge of “extracting usable data” from different IT systems used by the NHS and GPs.
It also says that care homes were not given detailed guidance by DHSC on how to help their residents shield, because DHSC “intended that their care would be covered by the general COVID-19 guidance provided to care homes”.
About 45,000 of the 2.2 million people who ended up being told to shield were living in care homes and by 7 December nearly 4,000 of them (3,889, or 8.6 per cent) had died with COVID-19 recorded on their death certificate. NAO said it did not have comparable data for non-CEV people in care homes.
The report says the government’s communications with CEV people were “not always clear”, while charities “reported difficulties in getting detailed evidence and information from government”.
It found that 1.3 million CEV people were added to the shielded patient list and were therefore eligible for support through the shielding programme by 12 April 2020, but another 900,000 had to be added to the list between 18 April and 7 May.
The report also describes how a contact centre set up by the Department for Work and Pensions (DWP) – through the outsourcing company Serco – tried to contact 1.8 million CEV people who had not yet registered for the scheme.
About 375,000 of the people could not be reached because of missing or inaccurate telephone numbers in NHS patient records, while another 440,000 declined to register for support when contacted, with many hanging-up or believing it was a nuisance call.
Details of those who could not be reached were then passed to local authorities to follow up.
NAO also says that about four-fifths of the more than 500,000 CEV people who received food boxes through the programme were satisfied with what they received.
DHSC has told NAO that it is unable to say if the shielding programme led to fewer deaths and less serious illness in CEV people, although it is “confident that shielding has helped to protect CEV people”.
Among the report’s recommendations, it says DHSC should ensure there is “easy, but secure” access to the necessary healthcare data for a future pandemic or civil emergency.
It also says that DHSC should establish “a robust plan on how to communicate clearly, quickly and consistently with CEV people to ensure that people are clear if they need to shield, why they need to shield, how to shield and the support available to them”.
And it says the government should review the effectiveness of the new national shielding service system, which was introduced for the second lockdown and should allow CEV people to register their needs more easily.
The report only examines the government’s performance up to 1 August 2020.
NAO concludes that it is “evident” that the various departments involved in the programme “actively considered lessons learned”, which they applied to shielding during the second lockdown from 5 November to 2 December 2020.
But repeated concerns reported by Disability News Service (DNS) after August last year suggest significant continuing problems.
In early October, DNS reported that shielders were having to rely on peer support and their own judgement to protect themselves from the pandemic, after despairing at the lack of clear government guidance.
Later that month, there was criticism of the government’s updated shielding guidance for its lack of detail and clarity, and the failure to announce new support.
The following month, there were concerns that the government had treated CEV people as “an afterthought” as new government CEV guidance was rushed out less than 24 hours before a new England-wide lockdown began.
Gareth Davies, head of the NAO, said: “The shielding programme was an important response to support clinically extremely vulnerable people asked to shield.
“It provided support to many of those most at risk from COVID-19, and delivered food to just over 500,000 people.
“However, challenges pulling together data meant it took time to quickly identify those needing to shield, and therefore eligible for support.
“Government has learnt lessons from this programme and is better placed should this type of support be required again.”
NAO estimates that £308 million was spent on the shielding scheme by 1 August, including £200 million on food box deliveries, £34 million on the medicine delivery service, about £54 million by local authorities on basic care and other support to CEV people, and £18 million on the shielding contact centre run by DWP and Serco.
Vicky Foxcroft, Labour’s shadow minister for disabled people, said: “Labour welcomes this report and we call on ministers to take appropriate action, including improved and targeted use of funds and improved access to healthcare data.
“The government has been too slow throughout this pandemic and it must learn the lessons to properly support those who are clinically extremely vulnerable.”
She had pointed out the previous day (Tuesday) in the House of Commons that government communication with CEV people had been poor.
Despite the NAO report, health and social care secretary Matt Hancock told her: “I am afraid I do not agree with the honourable lady one bit.”
He said DHSC writes “regularly” and “individually” to those who are shielding.
11 February 2021
News provided by John Pring at www.disabilitynewsservice.com
