Official response to Covid risk to disabled people ‘was failure of human accounting’
The government’s discriminatory response to the pandemic led to disabled people facing a greater risk of death and other harm, the Covid public inquiry has been told by disabled people’s organisations (DPOs).
In a statement to a preliminary hearing yesterday (Wednesday), four national DPOs said this discrimination by the “political and administrative” establishment led to disabled people facing problems obtaining food, isolation from essential services, and a greater risk of contracting the virus.
All this was “compounded by lack of accessible communication and information”, the inquiry heard.
Barrister Danny Friedman, speaking on behalf of Disability Rights UK, Disability Wales, Inclusion Scotland and Disability Action Northern Ireland, told the inquiry (PDF): “Fundamentally the political and administrative response to the pandemic has excluded disabled people.
“Either no thought has been given to them or thought given has been inadequate or too late.”
He added: “For them, the significant issue in the fusion of science and government that generated Covid policy is that none of it contained disability specialists, service providers, subject matter experts or end users.”
And he said the official acknowledgement that disabled people were significantly more likely to die from COVID-19 – and the response to this – was “either belated or insufficient”.
He described this as a “basic failure of human accounting”.
The four DPOs said that key parts of the UN Convention on the Rights of Persons with Disabilities should be key to the inquiry’s work, including article 11, which requires governments to take “all necessary measures to ensure the protection and safety” of disabled people “in situations of risk” such as “humanitarian emergencies”.
Organisations run by disabled people should have been consulted more often during the pandemic, they said.
Friedman told the inquiry: “It is of overall benefit to the well-being of society if it can happen now.”
He said that the absence of expert advice and consultation with disabled people and disability service-providers “resulted in failures of foresight of some of the most isolating and resource-impoverishing” experiences of lockdown.
These included problems obtaining food and other resources, which led to “hunger and degrading treatment”; failures in provision of social care; “insufficient access to information”; and “inadequate protection of individuals in social care settings”.
Friedman said the co-production that failed to happen during the pandemic must now take place during the inquiry.
His comments, on behalf of the four DPOs, were made at the second preliminary hearing of the inquiry’s second module, which will examine political and administrative decision-making of the UK and devolved governments during the pandemic.
The four DPOs have been given core participant status in this second module.
Baroness [Heather] Hallett, the inquiry’s chair, insisted yesterday that equalities would be “at the forefront of the inquiry’s work”.
She said: “The only question is how we ensure we investigate inequalities properly and we investigate properly the disproportionate number of deaths in particular groups and communities.”
The hearing came as former health and social care secretary Matt Hancock faced allegations that he dismissed expert advice to test everyone entering a care home for coronavirus at the start of the pandemic, after WhatsApp messages he sent were leaked to the Daily Telegraph. Hancock has called the reports “categorically untrue”.
Kamran Mallick, chief executive of Disability Rights UK, said after yesterday’s inquiry hearing: “Almost 60 per cent of those who died in the pandemic were disabled people and millions of disabled people experienced hardship and isolation and were left unsupported and unprotected.
“The Covid public inquiry needs to hear the voices of disabled people, listen to our evidence and testimony and ensure that lessons are learnt for the future.”
Rhian Davies, chief executive of Disability Wales, said the pandemic exposed “deep-seated inequalities in society, with laws that had been introduced to protect the rights of disabled people failing to do so when most needed.”
In Wales, 68 per cent of Covid-related deaths were of disabled people, but Davies said there had been “nothing inevitable” about this high death rate.
She said: “It is therefore vital that the COVID-19 inquiry ensures justice for all who lost their lives or found themselves fighting for their very existence.”
Nuala Toman, head of policy for Disability Action Northern Ireland, said the experience of disabled people “must be at the heart of the Covid-19 inquiry”.
She said: “It is important lessons are identified and learned from the COVID-19 pandemic.
“Never again should disabled people have to experience hunger, degrading treatment, social isolation, the collapse of social care and barriers in accessing routine health services.”
Inclusion Scotland said the pandemic “continues to be catastrophic for disabled people and we are still dealing with the consequences of the policy decisions made by people who often have little or no regard for our needs and views.
“We look forward to finding out why this happened and continues to happen, and to getting accountability via the UK Covid-19 Inquiry so that lessons are learned and disabled people are never again put in this situation.”
2 March 2023
Covid inquiry ‘must publish early report on safety of clinically vulnerable people’
The Covid public inquiry should produce an interim report that would suggest measures to improve the safety of disabled people who continue to be at far higher risk of severe harm from coronavirus, campaigners have urged.
The campaign group Clinically Vulnerable Families (CVF) made the call at a preliminary hearing of the inquiry’s third module, which will examine health systems across the UK.
CVF told the inquiry, through its barrister Adam Wagner, that for the half a million people who are clinically vulnerable, clinically extremely vulnerable and severely immuno-suppressed – the “forgotten half million” – the pandemic was “by no means over”.
CVF represents people in those groups across England, Northern Ireland, Scotland and Wales, and has been granted core participant status in the third module.
Wagner called on the inquiry’s chair, Baroness [Heather] Hallett, to publish an interim inquiry report that improves the safety of those with a higher risk of severe harm from COVID-19, addresses those “ongoing risks”, and helps with clinically vulnerable people’s “reintegration into society”.
Wagner said: “For many clinically vulnerable people, there has been no freedom day.
“The COVID-19 pandemic is not over. They still remain at serious risk from contracting the virus, which is still of course at large and we are subject to a series of waves in each year.”
He added: “Life has moved on for the vast majority of the population and yet the clinically vulnerable continue to have to shield.
“They are denied free treatments, such as Evusheld, and timely antivirals.
“They are also denied basic public health protections, such as HEPA filters in public buildings and reasonable adjustments at work, which would make them able to live more fulfilling lives out and about rather than locked in their homes.”
He told the inquiry the people CVF represents are about 7.5 times more likely to die from Covid than the general population and are more than five times as likely to develop Long Covid, while many continue to shield from the virus.
Jacqueline Carey, a counsel to the inquiry, told the inquiry earlier that Baroness Hallett had informed the prime minister last year that she wanted to publish interim reports so she could “ensure that any urgent recommendations could be published and considered in a timely manner”.
Carey said the CVF group had urged Baroness Hallett to produce an interim report with recommendations that would improve the safety of those at higher risk of severe harm from Covid-19.
She said: “Whilst the topics and areas for inclusion in any interim report or reports are a matter for you to consider, I am sure this is precisely what you had in mind when you made this recommendation to the prime minister.”
Carey also told the inquiry that module three would – among many other areas – examine the use of “do not attempt cardiopulmonary resuscitation” (DNACPR) instructions during the pandemic, and how discussions about DNACPR were held with patients and their relatives.
It will also examine the impact of shielding on those who are clinically vulnerable and clinically extremely vulnerable, and the identification, diagnosis and treatment of Long Covid.
2 March 2023
Councils ‘must turn their backs on policies that threaten right to independent living’
Campaigners have called on local authorities to turn their backs on policies that force disabled people into residential homes against their will and therefore “seriously threaten the right to independent living”.
The calls came after it emerged that Bristol City Council has drafted a policy that could push disabled people into residential care instead of providing them with support in their own homes, if that is “better value” for the council.
The draft document was highlighted last week by the grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL), which said such a policy could have “catastrophic implications for disabled people’s independence”.
But Disability News Service (DNS) has now confirmed that at least two other local authorities – Devon County Council and the London borough of Barnet – have had similar policies in place for several years.
Devon County Council has had its own Fair and Affordable Care Policy since 2015, while Barnet’s was introduced in 2019.
Despite it potentially pushing disabled and older people into residential care against their will, a local user-led organisation, Living Options Devon, refused this week to comment on the long-standing policy.
Living Options Devon thanks Devon County Council prominently on its website for its financial support and says it has worked closely with the local authority for “many years”.
But when asked to comment on the council’s care policy and whether it could breach the Human Rights Act, the Care Act and the UN Convention on the Rights of Persons with Disabilities, a Living Options Devon spokesperson said it was “not in a position to make a comment”.
A Devon County Council spokesperson said the policy had been in place since 2015 and had been introduced following a public consultation.
He said: “It sets out how we ensure we meet eligible needs with the limited adult social care funding at our disposal.
“It accounts for preferences and choices and people can express how their needs are met. Nobody is forced into residential care.”
But he had failed by noon today (Thursday) to provide a link to the consultation, provide figures showing how often the policy had been used since 2015, or explain how the policy did not force disabled people into residential care.
Bristol City Council (BCC) claimed this week that its draft policy complied with its duties under the Care Act.
A BCC spokesperson said: “An equalities impact assessment for the new policy is being finalised and will be made publicly available once the formal consultation process for the policy begins this spring.”
Both Disability Rights UK (DR UK) and Inclusion London raised serious concerns about such policies this week.
Svetlana Kotova, Inclusion London’s director of campaigns and justice, said: “We are extremely concerned by policies like this.
“They seriously threaten the right to independent living, and they put the issue of saving money before respecting and upholding disabled people’s basic human rights.
“Policies like this can be used to lock us all up in institutions again because it is cheaper.
“Councils introducing policies like this just shows how fragile our support in the community is, and how it is more important than ever that there is a legal right to independent living which fully incorporates article 19 of the UNCRPD (UN Convention on the Rights of Persons with Disabilities).
“We commend disabled people in Bristol for raising concerns and trying to fight against this policy.
“Disabled people in other areas must be vigilant and, if necessary, stand up to protect our lives and our right to support in the community.”
Fazilet Hadi, DR UK’s head of policy, said: “Disabled people should have the right to decide where we live.
“It is vital that we can choose to live independently in our homes and not be forced into care homes or shared communities.
“It is unthinkable that non-disabled people would have their agency removed in the way that some councils have removed the agency of disabled people.
“Councils need to support our autonomy, choice and control and uphold our rights under the Equality Act and the UNCRPD to lead full lives connected to our family, friends and community.
“It is our right in law, and it is our moral right as citizens to be treated with dignity and fairness.”
The north London disabled people’s organisation Inclusion Barnet, which first raised concerns about a similar cost-cutting policy when it was introduced four years, urged local authorities to learn from what had happened in the borough.
Caroline Collier, Inclusion Barnet’s chief executive, said she believed that Barnet council – which changed leadership from Conservative to Labour at last year’s council elections – had now stepped away from the policy and towards a new “home first” strategy.
She said: “I would urge leaders in other parts of the UK to learn from Barnet – it was a really unpopular policy and they have now stepped away from it, so I would encourage Bristol and other affected areas to reach out to understand Barnet’s experience of this.
“I would also say that they could save disabled people a lot of stress and uncertainty by reversing this decision sooner rather than later.
“Policies which deprioritise independent living are regressive and wrong.
“They make a lot of disabled people feel unsafe even when they are not immediately affected.”
Barnet council refused to comment.
2 March 2023
Call for support for disabled people enduring ‘unbearable’ post-Grenfell safety work
The UK government has failed to realise the urgent support needs of disabled people who are having to endure “unbearable” safety work that is being carried out on their flats following the Grenfell fire, politicians have been told.
Many disabled people face the prospect of having to move out and find somewhere else to live temporarily while such “remediation” work is carried out, despite the drastic shortage of accessible accommodation.
Those who can stay in their flats while safety work is taking place outside – including the replacement of dangerous cladding – are often having to cope with “debilitating” levels of noise and dust.
Georgie Hulme, co-founder of the disabled-led leaseholder action group Claddag, was giving evidence yesterday (Wednesday) to the Welsh parliament’s local government and housing committee.
She told the committee: “Living through remediation works is frustrating and unbearable for anyone but can be particularly debilitating and dangerous for disabled people.”
Hulme, who has multiple impairments and health conditions, told the committee that she was experiencing “physical pain now at the thought of what’s to come”.
She said: “On any day, if things become unbearable for me, I won’t be able to leave the flat to escape for a break when I am on my own.”
She added: “The impact of dust can be dangerous for people with health and respiratory issues.
“To date, there has been no UK government acknowledgement of the need to increase support hours to help us through remediation works.
“How can the full responsibility be on local authorities, following major budget cuts and services being overstretched?”
Hulme, a wheelchair-user, said the shortage of accessible accommodation in Manchester meant she could be left temporarily homeless if she is forced to move out.
She told the committee that the high levels of stress caused by fearing for her safety in the event of a fire, as well as worrying about her finances and future for the last three years “with no end in sight”, had made her ill and left her hospitalised many times.
She and her Claddag co-founder, Sarah Rennie, are awaiting the result of their high court challenge of the government’s refusal to ensure that all disabled people can safely evacuate from high-rise blocks of flats in emergencies.
Their case followed the inquiry into the Grenfell Tower fire, in which those who died were disproportionately disabled people.
The inquiry found that, with every disabled resident who died in the fire, there had been no plan in place to help them evacuate, or to ensure their information was available for the fire and rescue service to help them evacuate.
The Grenfell fire led to 72 people losing their lives, including 15 of 37 disabled residents, on the night of 14 June 2017.
But the government later rejected the Grenfell Tower Inquiry’s recommendation that all owners and managers of high-rise residential buildings should be forced to prepare a personal emergency evacuation plan for all residents who might find it difficult to “self-evacuate”.
Hulme told the committee this week: “We urge you to take time to understand the additional and complex ways in which disabled and older people are impacted by the building safety crisis.”
She called particularly for cross-departmental policy that addresses the health and social care impact of living in flats undergoing remediation works, “the disproportional impact of the financial burden of the crisis on disabled and older people, provision of accessible alternative accommodation for disabled people, and the urgent need for emergency evacuation plans for all”.
Rennie has been told she will need to move out when internal work is carried out on her block of flats, but she then faces the threat of losing her NHS continuing healthcare support package if she has to leave the area for more than 28 days.
“There is nowhere for me to move to. I have a profile bed, a hoist, a wet-room.
“We’re looking at a solution where I go and live with my parents, which is ideal, but it would trigger that my care funding would stop because I would be leaving the area.”
She said it was vital for governments to consider the ways in which policies “overlap” between different departments.
She said: “There are a lot of policies that are conflicting and there just needs to be some leadership around some… policies to get us through the next few years.”
She said that many older and disabled people are afraid to advocate for themselves and talk about their concerns about ongoing safety work “for fear of consequences, being perceived as vulnerable or unable to look after themselves or their partners”.
Megan Thomas, policy and research officer for Disability Wales, told the committee that many of the concerns faced by disabled people in Wales were breaches of the UN Convention on the Rights of Persons with Disabilities.
She said: “As the Welsh government has committed to incorporation [of the convention into Welsh law] we would like to see what steps are being taken to build the housing stock up to those obligations.”
And she said there needed to be more engagement with disabled people on housing and living standards, particularly when remediation work is being carried out.
Thomas called for legislation that would set out the respective responsibilities of developers and local authorities when temporary housing was needed.
She said: “One of the big problems here is that emergency and alternative housing in Wales is incredibly poor, incredibly difficult to access, and most of what is even termed accessible housing is not accessible at all.”
2 March 2023
System for challenging councils’ care decisions ‘is confusing, slow and stressful’, says EHRC
The process of challenging the adult social care decisions made by local authorities is confusing, slow and stressful and is failing the disabled people who rely on it, an inquiry by the Equality and Human Rights Commission (EHRC) has found.
The commission launched the inquiry in July 2021 to examine the experiences of service-users and carers who have challenged decisions made by councils in England and Wales.
The inquiry report, published this week, found that some service-users are put off challenging council decisions on their support because they are “afraid of negative repercussions”.
One disabled person told the commission that the process of trying to secure support from their council had made them ill, and that they “ended up completely just screaming and shouting for weeks on end because I was in such a state”.
They added: “I didn’t know what to do. I was having all these emails and being told this and having all these meetings. It was just… I didn’t know what to do.”
Some of those interviewed by the commission described “unethical or dishonest” behaviour by local authority staff, including deliberately not sharing information and giving false information.
One said: “Because I’ve had to challenge them, and rightly so, they loathe me and they will do anything they can to write things to keep excluding me really.
“It’s just horrendous, because the lies that are written to cover their backs are shocking.”
Disability Law Service, which provided evidence to the inquiry, said it welcomed the EHRC report.
It said that local authority social care complaints handling was “not effective” because the relevant regulations fail to demand enough from local authorities “in respect of process, quality, timescales and outcomes”.
And it said that complaints handling was “undermined” by the absence of a system of independent reviews, and a lack of technical knowledge among those investigating complaints.
The Care Act 2014 included measures to set up a system for appealing against social care decisions, but the UK government has yet to implement it.
One third of local authorities in England and nearly half of those in Wales have established their own appeals system for some adult social care decisions, while decisions can also be challenged through judicial review in the high court.
Service-users can also lodge complaints with their council, and once that process has been exhausted, a complaint can be lodged with the Local Government and Social Care Ombudsman or the Public Services Ombudsman for Wales.
But disabled people told EHRC that they struggled to navigate the complaints system, particularly if they were already at crisis point, and that they found the process “unclear, complex and energy-sapping”.
The commission found that fewer than half (42 per cent) of local authorities would always signpost someone wishing to challenge a decision to independent advice or support.
A Law Society study found last year that legal aid for social care cases was unavailable to more than two-thirds of the population in England and Wales, while there were only three community care solicitors operating in Wales.
Many of the solicitors who do work in the social care area are unwilling to take on cases concerning assessment, eligibility, care packages and related financial issues, the commission said.
It called on the UK government to “urgently review the issues with legal aid for community care across England and Wales”.
The inquiry found that around nine in 10 local authorities provide information on how to challenge a social care decision in the most common accessible formats (including easy read, large print, British Sign Language and alternative languages), but up to 10 per cent either do not provide that format at all, or do not know if they do.
And only three per cent of local authorities make such information publicly available in British Sign Language without people having to take steps themselves to request it.
And just two-fifths (42 per cent) of local authorities reported training frontline decision-makers on the UN Convention on the Rights of Persons with Disabilities.
One of the disabled people who gave evidence to the inquiry described how their council cut their support by three-quarters even though the impact of their impairment on their life had not changed.
Another described the “degradation” they had experienced at the hands of their local authority, which had damaged their “self-image”.
They said: “To suddenly have a living environment where you have dust all over the floor or your coffee table has about five months’ worth of stains and is actually very unhygienic.
“To live like that you don’t feel clean. You don’t feel like a respectable human being I suppose.”
Many service-users the inquiry heard from said they felt their involvement in assessments and care and support planning “was tokenistic, frustrating and disempowering, culminating in care and support that did not meet their needs properly”.
The inquiry also heard of care charging decisions by councils that “pushed people into more precarious financial situations”, while some local authorities failed to take account of disability-related expenditure when calculating financial assessments, “even though they are required to do so”.
Marcial Boo, EHRC’s chief executive, said: “While local authorities are facing huge pressures, they must protect people’s rights when making decisions about their care.
“Effective ways for people to challenge those decisions are crucial to ensuring that good decisions are made and people’s needs are met.
“People who receive social care should not be left in the dark about how to challenge decisions that affect their wellbeing, dignity and independence so fundamentally.
“Our findings demonstrate that improvements must be made to the accessibility of information, the clarity of the complaints process and the availability of support.”
The commission’s report makes recommendations for local authorities in England and Wales, the UK and Welsh governments and other bodies, including the Care Quality Commission and the Care Inspectorate Wales.
2 March 2023
Government’s white paper ignores key demands from disabled fans
The government has ignored key demands made by disabled fans in its new white paper on football governance, say campaigners.
The 99-page A Sustainable Future document mentions disability just once, and even then it calls on clubs to improve accessibility for “those with disabilities”, rather than disabled people.
The white paper comes only three months after a survey by the disabled-led charity Level Playing Field, which represents disabled sports fans in England and Wales, found increasing numbers of disabled supporters were facing barriers to watching live sport.
Now Level Playing Field has raised concerns about the white paper’s failure to deal with crucial issues relating to disabled fans.
Among the proposals in the white paper, published last week, are a new independent regulator for the men’s elite game; a guarantee for fans to have a greater say in the strategic running of their clubs and helping to protect their clubs’ heritage; and new tests to ensure suitable owners and directors of football clubs.
The prime minister, Rishi Sunak, said the “bold new plans” would “put fans back at the heart of football, protect the rich heritage and traditions of our much-loved clubs and safeguard the beautiful game for future generations”.
But Level Playing Field (LPF) said the white paper had “under-delivered” and showed “a lack of vision or action” when it came to ensuring “a more equitable and inclusive match day for disabled football fans”.
The white paper follows the Fan Led Review of Football Governance, which reported to the government in late 2021.
In its evidence to the review (PDF), LPF had called for football clubs to meet minimum, measurable accessibility standards; for disabled fans to be represented on club boards; and for there to be regular, “structured” dialogue between clubs and their disabled fans.
LPF wanted the new regulator to have powers to ensure these standards were met.
But its proposals were all missing from the white paper.
The government’s white paper says instead that “equality, diversity and inclusion” will “fall outside” of the new regulator’s “immediate scope” because the football industry “has taken on greater accountability”.
It claims the Premier League and the English Football League have set their own standards on equality and diversity which are “clear, coherent and proportionate”.
But Owain Davies, chief executive of Level Playing Field, said the single reference to disability in the white paper was “not good”.
He said: “We feel what’s been written lacks the teeth to drive change and to ensure access and inclusion is delivered and there is not just lip service.
“It was our moment in the sun to be able to make meaningful change for disabled people and it has under-delivered and we are really frustrated.”
Tony Taylor, Level Playing Field’s chair, added: “Tracey Crouch [who chaired the Fan Led Review] stated that football must seize a ‘once-in-a-lifetime opportunity’ to reform, and we wholeheartedly agree.
“We are disappointed that this white paper proposal lacks the vision to future-proof the game for disabled sports fans and bring about real-time improvements to disabled match-going fans.
“Once again, we find it necessary to emphasise the need for disability representation in footballing governance to shape and deliver appropriate inclusion.”
Davies said there was evidence that lots of football clubs, when it comes to disability, “do it really well”, but he said that others “struggle”, and “that’s where the independent regulator could have supported” that work.
He said: “We wanted the government to invest in this, to prioritise the matchday experience for disabled fans.
“We want disability to be talked about at board level, so that it cascades across a whole organisation and it lives and breathes disability because it is prioritised at the top of the tree.”
But he said the white paper suggests instead that equality issues are not being treated as a priority.
He said: “It feels like it’s been like that forever. It’s time to make the change now.”
The Department for Culture, Media and Sport refused to comment.
2 March 2023
Other disability-related stories covered by mainstream media this week
Services for children with special educational needs and disabilities (SEND) in England are to be “transformed”, with the introduction of new national standards and thousands more specialist school places, ministers have announced. The long-awaited changes are being introduced to end the postcode lottery that families face and ensure that children and young people with SEND get “high-quality, early support” wherever they live, the government says: https://www.theguardian.com/education/2023/mar/02/special-needs-services-children-england-plan
A mother and father who left their disabled daughter in bed-ridden squalor have been jailed for gross negligence manslaughter. Kaylea Titford, 16, was found in conditions described as “unfit for any animal”, in soiled clothing and bed linen, following her death at the family home in Newtown, Powys, in October 2020: https://www.independent.co.uk/news/uk/crime/powys-bmi-newtown-swansea-crown-court-b2292245.html
London and Blackpool train station management have apologised after a disabled woman was left feeling too terrified to travel after falling and smashing her face on a platform when assistance she had requested failed to turn up. A review of how assistance is booked is now under way in the capital. Deborah Dempsey was travelling from London Euston to Blackpool North last month after visiting her son: https://www.lancs.live/news/lancashire-news/blackpool-pensioner-smashes-face-train-26360551
Baroness [Tanni] Grey-Thompson is calling for improved access for all users of electric vehicle charging-points. The 11-time Paralympic gold medallist, a wheelchair-user, said she had to opt for a diesel vehicle rather than an electric model as “accessibility is being ignored”. She is seeking government assurances that more will be done to make charging-points more accessible in the future: https://www.bbc.co.uk/news/uk-wales-64776960
A student who was denied more time to complete her university course while undergoing life-saving treatment for cancer has been awarded £12,000 compensation. The University of Warwick has agreed to pay the damages for the “distress and inconvenience” caused by denying Riham Sheble’s extension request. The postgraduate film and television studies student, from Egypt, was diagnosed with uterine sarcoma – a rare and aggressive form of cancer – in February 2021. She described the rejection of her request as “completely unnecessary” and “utterly unjust”: https://www.independent.co.uk/news/uk/home-news/student-cancer-payout-warwick-university-b2289872.html
2 March 2023
News provided by John Pring at www.disabilitynewsservice.com
