National Disability Strategy: Outrage over ‘rehashed’ strategy that is ‘not fit for purpose’
Disabled people’s organisations (DPOs) have expressed “outrage” at the UK government’s decision to launch a “tokenistic” and “rehashed” National Disability Strategy that is “not fit for purpose”, and was not developed in co-production with DPOs.
A network of more than 20 of the country’s leading DPOs has attacked the new strategy, which was launched yesterday (Wednesday), with one describing it as a “damp squib” and the network saying it was “full of rehashed old policies” and failed to tackle the growing poverty, exclusion and discrimination disabled people face.
The strategy is the first from successive Conservative-led governments since its predecessor, Fulfilling Potential, petered out six years ago, but already looks as though it will have little or no credibility with DPOs and the wider disabled people’s movement.
Even before its publication, the government was facing a high court challenge from four disabled people – supported by DPOs such as Disabled People Against Cuts and Inclusion London – over a controversial consultation that informed the strategy.
Inclusion London said yesterday that the new strategy was “a damp squib of a non-strategy” that had not been developed with DPOs.
That claim appeared to be confirmed by the government’s thank you note at the end of the document to those individuals and organisations who had “so generously shared their time and insights”.
Although this note name-checks several individual disabled people and disability charities, such as Scope, Leonard Cheshire and Mencap, and the government’s own regional stakeholder networks, it appears to include just one DPO, Disabled Motoring UK.
DPOs also point out that the minister for disabled people, Justin Tomlinson, shut down his advisory forum of DPOs last year after just three meetings.
Following repeated cancellations of meetings by Tomlinson, even while he and his government were preparing their new strategy, DPOs set up their own replacement network, DPO Forum England, which already has 22 members, including many of the country’s leading organisations of disabled people.
The forum yesterday described the government’s strategy as “tokenistic”, with a “raft of re-hashed policies, random actions and vague promises for future consultations”.
It said that disabled people have been waiting for “10 long years for a strategy that will tackle the growing poverty, exclusion and discrimination we face and set out a transformative plan for social justice, equality and inclusion.
“This so-called strategy does neither of these things.”
The forum added: “Unlike the big disability charities that claim to speak for disabled people but do not represent us, disabled people’s organisations are united in our opposition to this so-called strategy and once again call on the government to start working with disabled people, not against us.”
And it called on the government to produce a new strategy that embedded the UN Convention on the Rights of Persons with Disabilities (UNCRPD) into domestic law.
There is some suggestion in the second part of the strategy that the government has listened to the criticism of its failure to co-produce the document with DPOs, or at least that it is paying attention to the upcoming high court case.
In this second section, the strategy claims that the government wants to put disabled people “at the heart of government policy making and service delivery”.
And it says that its Disability Unit will now review how government engages with disabled people, through discussions with disabled people, DPOs and charities, in line with its UNCRPD duties*.
Inclusion London, one of the forum’s members, described the strategy as a “damp squib”, and added: “We know disabled people have been disproportionately hit by austerity, by cuts to public services, cuts to benefits, by a broken social care system and by the government’s on-going failure to protect and support disabled people through this pandemic.
“Working with disabled people and our organisations to develop a disability strategy able to tackle these deep inequalities was an opportunity this government has chosen to ignore.
“Instead, the government has pressed ahead with a tick box exercise producing a strategy that is not fit for purpose and that has limited credibility with disabled people.
“The engagement and consultation with disabled people on this strategy has been so woeful and virtually non existent that a legal challenge by disabled people is taking place because the consultations have been so poor as to be unlawful.
“Disabled people haven’t even seen this strategy yet – no draft was produced for consultation.
“This is the opposite of putting disabled people’s voices at the heart of government as the minister for disabled people Justin Tomlinson claims.”
The Reclaiming Our Futures Alliance (ROFA) said the strategy “goes nowhere near what is needed to create disability equality”.
Neither ROFA – an alliance of DPOs and disabled people in England, and another forum member – nor its own member organisations saw the strategy before it was launched.
ROFA said Tomlinson’s actions in closing the DPO Forum after just three meetings “shows contempt” for disabled people and their representative organisations, as well as for the “nothing about us without us” principles that lie at the heart of UNCRPD.
Mark Harrison, a ROFA steering group member, said: “If the minister was serious about addressing inequality for disabled people, he wouldn’t have shut down the DPO Forum last year whilst developing this strategy.
“We have had no contact with him or his civil servants since September 2020.
“This is typical of this government – all spin but no serious policies to remove the structural barriers disabled people face.”
Kamran Mallick, chief executive of Disability Rights UK, also a forum member, said the strategy was “disappointingly thin on immediate actions, medium-term plans and the details of longer-term investment”.
He said: “The strategy has insufficient concrete measures to address the current inequalities that disabled people experience in living standards and life chances.
“There are scant plans and timescales on how to bring about vastly-needed improvements to benefits, housing, social care, jobs, education, transport, and equitable access to wider society.
“While we welcome the government’s recognition that disabled people are much less likely than non-disabled people to have a job, qualifications, to own a home, or to live in an accessible home, we haven’t been given the bold plans that will fix these huge issues.
“A vision is not enough. Admitting change won’t happen ‘overnight’ isn’t enough.
“We need radical plans, timescales, and deep financial investment to make change a reality.”
The publication of the National Disability Strategy came on the same day that the Cabinet Office was found to have twice breached the Equality Act (PDF) – and discriminated against a Deaf woman, Katie Rowley – by failing to provide a British Sign Language interpreter at two televised COVID briefings last year.
*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 general comment number seven
29 July 2021
National Disability Strategy: Plans are ‘realistic and deliverable’, say ministers
The government claims that its new National Disability Strategy will help to “build a better and fairer life” for disabled people, despite it offering only a handful of new policies and failing to win the backing of leading disabled people’s organisations (DPOs).
The government says the much-delayed strategy is “realistic and deliverable” and “rooted in the everyday experience of disabled people”.
But DPOs have expressed “outrage” at the decision to launch a “tokenistic” strategy that is “not fit for purpose” and was not developed in co-production with DPOs (see separate story).
Despite the government’s claims, many of the 100 “practical actions” in the strategy have already been announced, amount to nothing more than a promise to update guidance, or are subject to further consultation, discussion or review.
There is also no detail on the government’s plans for social care, as the Department of Health and Social Care (DHSC) is to publish its repeatedly-delayed proposals for reform “later this year”.
Although most of the policies have previously been announced, scattered throughout the strategy are a small number of new proposals, even though disabled campaigners are likely to remain wary of most of them because of the lack of detail.
Among them is the announcement of a replacement scheme for the Access to Elected Office and EnAble funds, which previously supported disabled people seeking to be elected as councillors and MPs before the programmes were closed by the government.
On accessible housing, there is a strong hint that the government will finally strengthen accessibility standards for new homes in England.
In the section on public transport, ministers say they are seeking “innovative” ideas that would allow disabled passengers to contact train staff from their seats, with contracts due to be awarded this month.
The Department for Transport is also promising to introduce new laws that will protect all disabled passengers of taxis and private hire vehicles from drivers who overcharge them and refuse to provide them with assistance, a long-standing concern among disabled campaigners.
And it is to spend £1 million on improving access at ferry terminals for services to the Isle of Wight and The Isles of Scilly, and commission research into designing accessible bus stops and bus stations.
On employment, there will be a new online advice centre, which will provide clear, accessible information and advice on disabled people’s employment rights, while the Ministry of Defence has pledged that disabled people will make up more than 15 per cent of its civilian workforce by 2030.
The Department for Business, Energy and Industrial Strategy and the Cabinet Office are to set up what they call an Extra Costs Taskforce, which aims to “better understand the extra costs faced by disabled people, including how this breaks down for different impairments”.
But there are likely to be concerns that the results of this taskforce will be used to justify cuts to the extra costs disability benefit, personal independence payment (PIP).
It had already emerged – in last week’s disability benefits green paper – that ministers want to cut future spending on disability benefits and are apparently considering merging PIP with universal credit, but these controversial ideas have been omitted from the strategy.
The strategy says the Disability Unit will develop a UK-wide campaign to “increase public awareness and understanding of disability, dispel ingrained and unhelpful stereotypes and promote the diverse contributions disabled people have made – and continue to make – to public life”.
The document also draws attention to last week’s refreshed Autism Strategy, which has been extended from its previous focus on adults to include children and young people for the first time.
In the second part of the new strategy, the government claims that it wants to put disabled people “at the heart of government policy making and service delivery”.
It says that its Disability Unit will review how government engages with disabled people, through discussions with disabled people, DPOs and charities, in line with its duties under the UN Convention on the Rights of Persons with Disabilities (UNCRPD)*.
And it says the Disability Unit will invest up to £1 million this year to develop a new Centre for Assistive and Accessible Technology, which could act as a source of evidence and expertise, pilot new ways of delivering technology, and improve training and support for disabled people.
The strategy also says that the Disability Unit will lead a programme to improve the “availability, quality, relevance and comparability” of government disability data, and by January 2022 will begin “regular disability surveys and monitor public perceptions of disabled people and policies” through the Office for National Statistics.
The Cabinet Office also plans to create a “Disability Commissioning Taskforce” of DPOs to improve access to government contracts for disability organisations.
And it will appoint a Disability Crown Representative to make the case for inclusion to potential government suppliers.
Meanwhile, the publication of the National Disability Strategy came on the same day that the Cabinet Office was found to have twice breached the Equality Act (PDF) – and discriminated against a Deaf woman, Katie Rowley – by failing to provide a British Sign Language interpreter at two televised COVID briefings.
*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 general comment number seven
29 July 2021
National Disability Strategy: No headline-grabbing initiatives and no mention of austerity
The government has released a long-awaited National Disability Strategy that includes 100 “commitments”, but few if any major proposals that appear likely to transform the lives of disabled people.
The pledges, proposals and plans included in the strategy are spread across government departments (see separate story).
Many of the “practical actions” have already been announced, amount to nothing more than updated guidance, or are subject to further consultation, discussion or review.
These include many of the education, housing, transport and employment proposals.
The strategy has already been dismissed by disabled people’s organisations as a “damp squib”, “tokenistic” and “not fit for purpose” (see separate story).
Even in the government’s own launch, briefings and press releases, there appear to be no stand-out proposals that ministers are pointing to as significant steps forward in improving disabled people’s lives.
The strategy is so lacking in headline-grabbing new policies that the government’s own press release includes plans to “consult on disability workforce reporting for businesses with more than 250 staff” as one of its highlights.
There is also an absence of an overarching theme, demonstrated by the failure to come up with a name for the strategy, and the comments of the prime minister, Boris Johnson, who stressed instead how every government department and agency will have to “do their bit to bring about… practical and lasting change”.
Despite Johnson drawing attention in his foreword to the document to the “obvious injustices” facing disabled people, there is little or no recognition in the strategy that successive Conservative-led governments have failed to act on these injustices over more than a decade.
There is also no mention in the 121-page strategy of the word “austerity”, despite widespread recognition of the negative impact of a decade of austerity on disabled people’s lives.
It had already emerged – in last week’s disability benefits green paper – that ministers want to cut future spending on disability benefits and are apparently considering merging personal independence payment with universal credit, but this is omitted from the strategy.
Instead, the strategy appears to be based on collecting as many disability-related policies as possible from each government department, many of which have previously been announced.
Justin Tomlinson, the minister for disabled people, said it was the first time that there had been “real cross-Government focus, with clearly set out priorities and aims”.
At an online launch event, he claimed the strategy showed how “conversation by conversation, department by department, policy by policy, action by action, we are dismantling the barriers and attitudes that hold disabled people back”.
He and his fellow ministers failed to mention the government’s previous disability strategy, Fulfilling Potential, which was launched in December 2011 but has not been refreshed or mentioned on the government website since November 2015.
There is no mention of Fulfilling Potential in the new strategy.
Even before the publication of the new strategy, the government was already facing a high court challenge from four disabled people – supported by DPOs such as Disabled People Against Cuts and Inclusion London – over a controversial consultation that informed the strategy.
A high court hearing is expected to take place later this year.
Meanwhile, the publication of the National Disability Strategy came on the same day that the Cabinet Office was found to have twice breached the Equality Act (PDF) – and discriminated against a Deaf woman, Katie Rowley – by failing to provide a British Sign Language interpreter at two televised COVID briefings.
29 July 2021
Watchdog finds no significant link between hospital discharge scheme and second wave COVID care home deaths, despite alarming figures
The care watchdog has yet to find a significant link between a controversial programme to discharge hospital patients still infected with COVID-19 into care homes and a series of fatal outbreaks of the virus, despite alarming new figures.
It came after analysis of official figures by Disability News Service (DNS) raised concerns of a possible link between the “Designated Settings” programme and a sharp spike in deaths in some care homes in England that took part in the scheme during the pandemic’s second wave.
Figures showing how many COVID-related deaths were associated with large and medium-sized care homes across the country in the first year of the pandemic were released last week by the Care Quality Commission (CQC).
But the figures also show how many COVID-related deaths were reported by care homes that had recently signed up to the “Designated Settings” programme, managed by CQC but devised by the Department of Health and Social Care (DHSC) and launched last autumn.
Under the programme, care homes that passed strict safety checks were allowed to accept hospital patients who were recovering from COVID-19 but were still infected with the virus.
Most of those homes allocated a segregated part of their building to receive patients with COVID-19, while other parts continued to be occupied by older and disabled service-users not infected with the virus.
Such arrangements were known under the programme as “zoned” settings, and often saw care homes of two or three floors dedicating one floor – and separate staffing – to the discharged patients with coronavirus.
From the start of the designated settings programme, there were fears that allowing such zoned settings risked repeating the outcome of the scandal that occurred early in the pandemic, when hospital patients were discharged into care homes without being tested for COVID-19, resulting in hundreds of deaths of older and disabled residents, and possibly many more.
Now the new CQC figures – which show the number of COVID-related deaths in each care home in each quarter of 2020-21 – have raised fears that the designated settings programme could – in some cases – have led to this kind of cross-infection in zoned settings.
DNS understands that CQC has not yet found any significant link between the designated settings programme and spikes in deaths at some of the homes that took part.
But DNS has found 25 care homes where there was a sharp spike in deaths in the quarter in which a care home joined the designated settings programme, or the following three months.
There is no suggestion that any of the homes failed in any way in their duties to protect their service-users or failed to follow the strict infection prevention and control protocols laid down by CQC, while some of the deaths could have been of people who had experienced a relapse after being discharged from hospital.
But the figures do raise concerns that the design of the designated settings programme could have led to the infection and subsequent death of some existing service-users in some of the care homes.
Among those homes is Castlebar, a care home in Lewisham which announced in March that it was closing for financial reasons, but which reported 13 deaths to CQC between January and March this year – compared with just two deaths across the previous nine months – after joining the designated settings programme in December.
Another is Aldergrove Manor, a purpose-built, 70-bed care home in Wolverhampton, owned by Select Healthcare Group, which reported just one death in the first three quarters of 2020-21, but then joined the scheme on 4 March 2021 and reported 13 deaths in the final quarter of 2020-21.
A third home, Heath Lodge, in Hertfordshire, is run by Gold Care Homes, and reported just three COVID-related deaths across the first three quarters of the pandemic, but then reported 19 in the final quarter, after joining the designated settings programme on 6 January 2021.
Another home, Hawkhurst House, in Kent, run by Graham Care Group, saw only four COVID-related deaths in the first nine months of the year, but then 30 in the final three months, after joining the programme in late October 2020.
And Cedars Place, in Essex, owned by Stow Healthcare, reported no deaths in the first three quarters of the year, but reported 12 deaths in the final quarter, after joining the designated settings programme on 18 January.
By 1pm today (Thursday), the owners of Castlebar, Aldergrove Manor, Heath Lodge and Cedars Place had failed to comment on the figures.
But Ernie Graham, co-owner of Graham Care Group, which owns seven care homes, has spoken to DNS about Hawkhurst House.
He said that some of the 30 deaths in the final three months of the year were in the part of the home that had been put aside for patients released from hospital with COVID – the second floor of the building – while some were of service-users in the other parts of the care home.
But he said there was “no evidence” that the virus had spread from the second floor to the rest of the home.
He said that the second floor of Hawkhurst House, which was used as the designated setting, had separate staffing and management, and a separate entrance, from the rest of the care home.
He said: “We went to one huge amount of effort to do this and worked really closely with the CQC. I can’t think how it could have happened.
“I haven’t seen evidence that there is any basis for being concerned.
“It was a terrible tragedy and very, very distressing for the staff. That second wave just hit like wildfire.
“All I know is that at Hawkhurst we took every measure we possibly could.”
Asked if there should be an investigation into possible links between the designated setting programme and the deaths at Hawkhurst, he said: “This is a pandemic. I am sure COVID needs to be investigated at every different level.
“Do I think this should be investigated? I don’t think so. [But] I’m only a care provider. I don’t really know.”
And he pointed out that there were also spikes in the numbers of deaths in homes that were not part of the designated settings programme during the second wave of the pandemic.
DNS understands that CQC has looked at the concerns but has not yet found any significant link between the designated settings programme and spikes in deaths at care homes, or any evidence to suggest a link between a designated setting and a higher number of deaths in a care home.
As part of CQC protocols, care homes that take part in the scheme must follow infection prevention and control (IPC) good practice, and they must also ensure that staff do not move between a designated and a non-designated setting.
Kate Terroni, CQC’s chief inspector for adult social care, said: “It is our role to ensure that proposed locations for the designate scheme, which is an initiative led by DHSC, are safe for people with a confirmed COVID-19 test result to be discharged into.
“Having inspected and, where appropriate, approved designated locations, we have supported people to leave hospital in a safe and timely way.
“Our IPC inspections provide an assurance, whether the designated location is standalone or zoned, that the correct infection prevention and control measures are in place to keep people safe.
“In considering the recent data which we have published on notifications provided to us about deaths of care home residents, it is important to remember that every number represents a life lost – and families, friends and those who cared for them who are having to face the sadness and consequences of their death.
“We are grateful for the time that families who lost their loved ones during the pandemic have spent meeting with us and the personal experiences they have shared.
“These discussions have helped us shape our thinking around the highly sensitive issue of publishing information on the numbers of death notifications involving COVID-19 received from individual care homes.
“We have a duty to be transparent and to act in the public interest, and we made a commitment to publish data at this level, but only once we felt were able to do so as accurately and safely as possible given the complexity and sensitivity of the data.
“In doing so, we aim to provide a more comprehensive picture of the impact of COVID-19 on care homes, the people living in them and their families.
“It is important to be clear, however, that although this data relates to deaths of people who were care home residents, many of them did not die in or contract COVID-19 in a care home.”
The Department of Health and Social Care (DHSC) refused to answer any questions about the CQC figures and any possible links with the designated settings programme, or to say if it would be investigating those concerns.
But a DHSC spokesperson said in a statement: “Every death from this awful virus is a tragedy and our deepest sympathies are with those who have lost loved ones.
“Throughout this global pandemic we have done all we can to protect vulnerable people in adult social care, providing billions of pounds to support the sector, including on infection and prevention control measures, free PPE [personal protective equipment], priority vaccinations and additional testing.
“We have seen huge take up of the vaccine in those settings, with 93 per cent of residents and over 75 per cent of eligible staff in care homes having had two vaccine doses.
“To prevent the risk of infections entering care homes, anyone who is likely to be infectious with COVID-19 should be discharged to a setting that meets a set of agreed standards, ensuring that residents who have tested positive for COVID-19 receive the right care.”
29 July 2021
‘Deep concern’ over government’s disability benefits green paper
Disabled people’s organisations (DPOs) and others have raised serious concerns about suggestions that ministers want to cut future spending on disability benefits and merge personal independence payment with universal credit.
The big disability charities have so far remained silent about the suggestion of cuts and moves to a single benefit in last week’s health and disability green paper, Shaping Future Support, which was published just as MPs were about to start their long summer recess.
Disability News Service has yet to see any evidence that the big charities – including Mind, Scope, Mencap, Leonard Cheshire, RNID and RNIB – have raised any concerns about either potential spending cuts or the idea of a new, single benefit.
But DPOs – those organisations run and controlled by disabled people – have spoken out this week.
Many have been alarmed by the green paper’s repeated references to rising spending on disability benefits, which, says the Department for Work and Pensions (DWP), “suggests there is more we can do to enable independent living and employment”.
The green paper says that ministers want to “explore making bigger changes to the benefits system” that will mean the system is “more affordable in the future”.
The green paper also suggests that ministers could create a “new single benefit” so as to simplify the application and assessment process, presumably by merging PIP – which contributes towards the extra costs of disability – with the income-related employment and support allowance (ESA) and universal credit.
Others were concerned by references to disability benefits systems in other countries, particularly to Switzerland – which has a “helplessness allowance” designed to contribute towards extra disability-related costs, which is awarded “only in exceptional circumstances” – and New Zealand, where the equivalent to PIP is means-tested and reaches a maximum of only £34 a week.
Ian Jones, from the grassroots WOWcampaign, said the green paper could be re-titled: “How can we pay less money to disabled people?”
He said: “It is important that this exercise is seen for what it is – an exercise to introduce retrogressive cuts to support and reduce the living standards of disabled people further.”
He pointed to the 2016 report by the UN’s committee on the rights of persons with disabilities, which found “grave and systematic violations” of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) by the UK government, mostly by DWP and its ministers.
Jones said: “It seems to me that if the UNCRPD cannot stop or at least hinder the government when it tries to make disabled people pay for COVID, having already made them pay for the 2008 financial crash, then it truly is not worth the paper it is written on.”
Ken Butler, welfare rights adviser for Disability Rights UK, said the suggestions about cuts to future spending and a new single benefit were “very concerning… especially as they were not directly raised by the DWP in workshops prior to its publication”.
He said any reduction in spending “could only happen if new rules excluded more disabled people or benefit amounts were reduced”.
He said: “A new simplified single benefit may be a way of achieving both.
“Given its highlighting of benefit spending costs, a concern must be that it could result in a means-tested mish-mash that will exclude some disabled people now receiving PIP.”
And he said the green paper’s idea of replacing benefit payments with provision of aids and equipment was something the government ruled out in 2016, adding: “Shouldn’t aids and adaptations be freely and widely available now under NHS provisions in any case?”
Butler said the green paper was “strangely silent” on continuing flaws in the disability benefits system, such as the government’s original intention of using the introduction of PIP from 2013 to cut spending on disability benefits by 20 per cent; the “20-metre rule”, which has led to thousands of disabled people losing their Motability vehicle and their independence; and DWP rules which mean that disabled people can earn and keep £100 more on the ESA permitted work scheme than they can under universal credit.
The grassroots, user-led mental health group Recovery in the Bin (RITB) said it was “deeply concerned about the spurious comparisons to New Zealand and Switzerland, both countries with cultures very different to the UK”.
An RITB spokesperson said: “Disabled people have borne the brunt of cuts over the last decade of austerity.
“We have disproportionately suffered during the pandemic and the government’s proposals to target some of the most marginalised people for further cuts is state cruelty.”
The RITB spokesperson added: “While we would welcome a simpler benefits process, the governments proposals are not the way to do it.
“We strongly oppose combination of ESA/PIP into a single benefit as it has the potential to remove all a person’s income in one sweep when we know many assessments for benefits are flawed and overturned at tribunal.
“At present, an ill person in receipt of both benefits can challenge a flawed assessment while still receiving the other benefit.
“Combining benefits is likely to cause significant poverty, undermine people’s ability to appeal unfair assessments and increase risk of suicide.”
Caroline Collier, chief executive of Inclusion Barnet, said the “long-overdue” green paper was “asking the wrong questions and implying the wrong solutions”.
She said: “It is clear that the government is worried about the cost of working-age benefits, but this issue can’t be looked at in isolation.
“What they should be focusing on is outcomes: decent social housing, a real living wage, accessible environments and services, good education and employment opportunities, tackling stigma, implementing the Marmot review into health inequalities.
“If they focused on decent outcomes for people, the structural issues and costs would take care of themselves.
“Not only would it be a more effective way of reimagining support in the 21st century, it would allow everyone to live decent lives, be supported if necessary and have the quality of life to which we should all be entitled.”
Mark Baggley, manager of Choices and Rights Disability Coalition in Hull, said that merging benefits and reducing “stressful repeated form-filling” for disabled people could be helpful from a practical point-of-view.
But he said that “sadly, past experience of merging benefits isn’t done to benefit people, but to simply cut costs and reduce spending”.
Vicky Foxcroft, Labour’s shadow minister for disabled people, said: “The government has a long way to go to rebuild trust with disabled people, especially after they snuck crucial proposals like this green paper through just before recess without any parliamentary scrutiny.
“This government’s green paper makes bold claims but lacks adequate detail or evidence and they have instead initiated a half-baked consultation during summer.
“Reducing the number of assessments needed has potential merit, but simply merging benefits is ill-thought-through.”
She added: “The government must recognise the amount of anxiety this will cause and clarify this isn’t just about a cost-saving exercise.
“We need a system that tackles the deep poverty and inequality disabled people face, including tackling the increased costs disabled people face, compared to non-disabled people.
“The future of benefits must support those who can’t work and help those who can into high-quality jobs and good training opportunities – allowing people to rise to their full potential.”
Dr Sarabajaya Kumar, co-founder of the disability caucus of the Women’s Equality Party, said that taking away the non-means-tested PIP would be personally “disastrous”.
She said: “I receive PIP, which allows me to work part-time to manage my multiple, complex conditions.
“I rely on my PIP (it is intended to cover the extra costs of being disabled, although it doesn’t, especially if one has multiple complex impairments, but it’s better than not having anything); and if it becomes means-tested and is merged with means-tested benefits, which I do not receive and would not receive because of my partner’s income (which is not my income!), I personally would be detrimentally impacted.
“His income does not cover the extra costs of my disability.”
She said PIP was “vital for keeping people in work and in my case also plugging a little of my rather substantial earlier losses [caused by losing a well-paid role through disability discrimination when she became disabled].
“Importantly, as a disabled person, my independence, which is critical, relies on me having PIP.”
Kathy Bole, co-chair of Disability Labour, said the government had taken “10 years to decide to simplify a bad system”, and she called instead for it to be “scrapped and overhauled”.
She said: “The government should stop wasting money on half-baked austerity plans and really engage with us to get the strategy right.
“Disabled people should not have to bear the brunt of the cost for COVID.”
29 July 2021
‘Black mould in my flat is slowly poisoning me, and my council is to blame’
A disabled man who has been left with serious health problems because of the toxic mould that has spread across large parts of his flat, has called for his council to be held accountable for its repeated failure to make the building safe.
Maxime*, who lives in a small, one-bedroom council flat in east London, has been complaining about the black mould, damp and roof leaks since 2017, and he believes he developed the autoimmune condition sarcoidosis because of the infestation.
He has now been told by a specialist in thoracic medicine that he is at risk of lung complications because of the mould and damp in the fourth-floor flat.
He has chronic pulmonary sarcoidosis, which studies have shown can be linked to exposure to damp, mouldy environments.
The NHS website warns that damp and mould in the home can affect the immune system and make a person more likely to develop respiratory problems, respiratory infections, allergies and asthma.
In addition to long-term mental distress and chronic migraine and cluster headaches, Maxime has now developed chronic insomnia, a skin rash and sores across his body, as well as chronic pain and fatigue.
Eventually, he even began to lose his hair and cough up blood.
Maxime said the symptoms have been caused by having to breathe in the toxic mould every day for more than four years.
He lost his job two years ago after he asked his employer to make reasonable adjustments for health problems that had been caused by the mould.
His GP initially thought he had lung cancer before referring him to a specialist who diagnosed him with sarcoidosis.
He only discovered the worst of the mould at the end of last year, as it had been hidden behind the sink and kitchen units where he had been keeping his food, plates and cutlery.
The council sent a senior surveyor to his flat in 2017, who confirmed there were multiple issues linked to roof leaks and damp inside the property and with the external walls of the building.
But Maxime claims that after this visit, the council refused for more than three years to investigate the mould, and the roof leaks and damp that he believes were causing it.
A council surveyor eventually visited last October, but the local authority took another seven months to begin to treat the mould.
But Maxime said the work was so poorly done that he complained.
The council has now agreed to carry out further work on his flat, including replacing kitchen units that are contaminated by mould, but it is still refusing to carry out the work on the building that will prevent the mould returning.
He has now asked to be moved to a new home, but he says the council has so far failed to send him the forms he needs to complete to apply for a transfer.
He told Disability News Service: “The council has failed in their duty of care and I have been slowly poisoned over the last four years.
“Every day I stay in this property, I continue to be poisoned. Every breath I take feels like it is slowly killing me.”
He added: “I wish I could go to court and get the council to acknowledge the pain and injury they have inflicted on my mental and physical health, as well as the nightmare they have put me through.”
He also fears there is wider systemic neglect of other disabled people in the borough, and highlights the case of a man with paranoid schizophrenia who won a court battle with the council in January.
Troy Goldie had been left in fear for his life after he had to live with a broken front door for four years while living on a street where there had been four stabbings.
Thanks to his legal case, the repairs were carried out and Goldie was awarded compensation and had his legal costs paid.
Maxime said Hackney council claims to care about “decency, inclusivity, dignity, respect, equality, justice, openness and the health and well-being of its most vulnerable residents… but the grim reality is that the exact opposite is happening to vulnerable people like me who are helpless, don’t have a voice and are left ignored, abused and injured.
“If someone like me, who still has a bit of fight in him, is being put through this, I can’t even imagine how hard it must be for people with more severe impairments.”
A Hackney council spokesperson said: “We are understandably concerned about this ongoing situation and have been working to address the issues that have been raised by the tenant.
“It was provisionally agreed following a visit to the property in question that we would replace all of the kitchen base units in order to deal with the issue.
“We are also investigating concerns raised about smells emanating from service pipes behind a bedroom cupboard.
“As the tenant has been citing his health conditions as a major concern and wishes to move from the property, we have advised him to contact his housing officer to consider an application for transfer on medical grounds.
“We will continue to work with the tenant to address the concerns raised.”
*He has asked for his surname not to be used
29 July 2021
News provided by John Pring at www.disabilitynewsservice.com
