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Category: Disability

  • Disabled people launch a legal challenge against the Tories’ ticket office closures

    The government is allowing train operators to close the majority of ticket offices on the rail network. There has been widespread outrage over the decision – not least the impact on chronically ill and disabled people. However, now the government and the four publicly-owned train operators are facing a legal challenge over the consultation process.

    Ticket office closures: the thin end of the wedge for disabled people

    As the Canary has been documenting, the Tories began planning to allow train operators to close ticket offices in 2022. However, in recent weeks transport secretary Mark Harper has pressed ‘go’ on the scheme. We only knew this originally thanks to rail passenger group the Association of British Commuters (ABC).

    The government had to sign the plan off, as there are regulations governing ticket offices. Of course, the arguments from the Tories and the companies include that only 12% of people buy tickets at offices. They have also launched a public consultation, where people can have their say.

    But trade unions, politicians, and chronically ill and disabled people are furious about the plans – and it’s clear why people are angry. As the Canary previously reported, 23% of disabled people are internet non-users. Ticket vending machines are often inaccessible. Plus, wheelchair users can only get their 50% discount on tickets from an office. Overall, the rail network is generally still not fully accessible as well. All this makes for a perfect storm for chronically ill and disabled people.

    Meanwhile, train operators are claiming that ticket office closures won’t affect accessibility – as they’ll redeploy staff across stations. However, this is literally not true.

    As the ABC has now revealed, two train operators are going to make 94 stations unstaffed under the plans. This would mean that West Midlands Trains would have a total of 137 unstaffed stations (94% of its network), and East Midlands Railway would have 90 (87% of its network). It is currently unclear what the situation is across the rest of the country.

    Yet despite this, the government is only doing a 21-day consultation – which closes to the public on Wednesday 26 July.

    So, with all this in mind two disabled people are taking legal action against the government and the four publicly-owned train operators.

    Breaching equality and accessibility laws?

    Sarah Leadbetter is registered blind, and Doug Paulley is a wheelchair user. Law firm Leigh Day is representing them. Essentially the two say that the consultation is inaccessible, and so discriminates against disabled people – and, in turn, is unlawful. They say this is because:

    • It should have been carried out when the proposals are still at formative stage. However, the decision to close ticket offices appears to have already been taken given statutory redundancy notices have already been issued to staff.
    • There are multiple, serious flaws with the consultation related to accessibility which mean disabled people will not be able to understand the impact of the proposals or provide a meaningful response.
    • The time period of 21 days falls far short of what is required to properly consider and respond to these complex and far-reaching proposals; even more so for disabled people given the accessibility issues described above.
    • The… [government and train operators] have failed to take any steps to avoid or reduce this disadvantage such as extending the consultation period, providing readily accessible alternative formats and proactively consulting with organisations representing disabled people.
    • Proposals have been on the table for a significant period of time: there is no reason why the short consultation period could not be extended, and the process adjusted in the manner set out above to ensure it is accessible to all members of the public.
    • The consultation process does not eliminate discrimination or advance equality of opportunity for disabled people for the reasons set out above.

    On the point of accessibility of the consultation, the ABC has clearly laid out the flaws. It noted:

    There are no paper copies available at stations (in standard, large-print or easy-read format), and most operators have failed to offer audio, Braille or British Sign Language versions of the consultation.

    Operators have made no attempt to reach out to non-internet users, or current non-users of rail. They have also ignored the need to reach out to rail users outside their local area (for whom stations would be a destination, not a point of origin). The short 21-day time period is a key accessibility issue, while the lack of a quantified national overview implies that any Equality Impact Assessments produced by train operators are likely to breach the public sector equality duty held by the DfT [Department for Transport].

    Leigh Day has sent the government and four train operators a Letter Before Action. However, Paulley and Leadbetter are not the only ones taking legal action.

    Mayors making moves

    As the Guardian reported:

    Five metro mayors, led by Greater Manchester’s Andy Burnham, said the “rushed” public consultation on the changes was not following due process and that the closures would affect thousands of jobs and “erode trust” in the railway.

    Like Paulley and Leadbetter, Burnham and his colleagues are arguing the government is carrying out the consultation unlawfully. He said:

    Section 29 of the Railways Act 2005 sets out a very clear and detailed process which must be followed if a train operating company proposes to close a station or any part of a station. That process has simply not been followed in this instance. It requires a 12-week consultation.

    A “fait accompli”

    Paulley said in a statement:

    The presence of dependable rail staff is incredibly important for disabled people, including me, who use our often inaccessible railways. The cuts are a fait accompli being pushed through the motions of this sham consultation, with its disingenuous claims and failure to give disabled people the information we need to respond properly. It is appalling that such an important topic is being handled in this manner and the process must be stopped.

    Leadbetter said:

    People like me, with visual impairments, rely on ticket offices and their staff to help us when we’re travelling and their closure will be a huge blow. To hold a consultation that fails to properly hear the views of those who need assistance the most is woefully inadequate. The government should scrap this unfair process and come up one that gives rail passengers with disabilities an equal say.

    Meanwhile, the independent rail regulator the Office of Rail and Road (ORR) has also intervened. It has told train operators that they have until Friday 21 July to prove they are compliant with accessibility regulations:

    Ticket office closures: an “outrageous” situation

    Overall, as the ABC summed up to the Canary:

    Doug Paulley and Sarah Leadbetter are doing millions of people a great public service, and it is outrageous that disabled activists have had to undertake this case while stakeholders and regulators stay silent. We are very glad to see that this latest legal action aims directly at the government, who everyone knows are the ones really pulling the strings.

    The government has clearly allowed the train operators to rush through the proposals – with chronically ill and disabled people either being the usual afterthought – or they simply don’t care. Either way, it appears that the ticket office closure plans may already be running out of track before they’ve even begun.

    Featured image via El Pollock – Wikimedia, resized to 770×403 pixels under licence CC BY-SA 2.0

    By Steve Topple

    This post was originally published on Canary.

  • HMIP slams treatment of disabled and refugee children at young offenders institute

    The independent prisons’ inspector has slammed a young offenders institution for its treatment of children under its care – including disabled ones. The lengthy report on Cookham Wood has identified multiple failings, with the boss of the inspectorate telling the government it has to act. However, the situation poses bigger questions about the UK’s prison system – as this is hardly an isolated incident.

    Sky News reported that:

    Hundreds of homemade weapons were found at a young offender institution “rife” with violence, according to a damning report.

    Cookham Wood facility in Rochester, Kent, was put into emergency measures after prison inspectors uncovered “appalling” conditions during an April visit.

    BBC News, the Evening Standard, the Independent, and the Sun all ran with the violence angle. However, what all of them failed to mention was that over a third of the children were disabled or neurodiverse, nearly a fifth were refugees or asylum seekers, and nearly two-thirds had been through the care system.

    Cookham Wood: failing on all counts

    Her Majesty’s Inspectorate of Prisons (HMIP) said in a statement that [ED: press release]:

    Cookham Wood held only 77 boys at the time of inspection, whose care was being overseen by around 360 staff, including 24 senior leaders.

    That means there are over four staff members per child. Yet staggeringly, despite this HMIP found outcomes for children were:

    • poor for safety
    • not sufficiently good for care
    • poor for purposeful activity
    • not sufficiently good for resettlement.

    Despite the Youth Custody Service appointing a new governor in February, this is a stagnation, or on one measure a worsening, in conditions since HMIP last inspected Cookham Wood:

    Cookham Wood inspection outcomes

    The report described that:

    • Staff kept 90% of children apart from other ones.
    • Staff had found more than 200 weapons in the months leading up to the inspection.
    • Living units were dirty.
    • Equipment was broken.

    ‘Hardly any meaningful human interaction’

    HMIP said in a statement that:

    Rather than engaging in conflict resolution, leaders had introduced extensive instructions on which boys were known to be in conflict and needed to be kept apart from each other…This undermined the provision of any meaningful regime, with access to education and other activities determined by which children could safely mix, rather than their individual needs or abilities.

    Despite this, levels of violence remained high and some boys spent days on end languishing in their cells in response to incidents. During that time, most had hardly any meaningful human interaction. Other children were separated for their own protection, and inspectors met two boys who had been subjected to solitary confinement for more than 100 days because staff could not guarantee their safety.

    In the report, HMIP logged even more damning findings. For example, it found:

    • There had been 34 instances of self-harm in the previous six months – with two children each carrying out 10 of these incidents.
    • 64% of children had been verbally abused by others; 35% subject to physical abuse.
    • Children put in isolation had received, on average, less than three minutes of education per day.
    • “56% of children had been verbally abused by staff, 37% had been threatened or intimidated, and 29% said they had been physically assaulted”.
    • 41% of children were locked in their cells on school days, with only a 30 minute break to get food and go outside.
    • Staff had cancelled 24% of all family visits for the children in the 12 months before HMIP visited.

    But it’s the experience of marginalised children which is particularly damning.

    Marginalised kids: hit hardest at Cookham Wood

    Of Cookham Wood’s population, 21% were adults at the time of HMIP’s inspection. Moreover:

    • 58% of children were on remand – that is, they had not been convicted of a crime, and might never be.
    • 61% of children were from Black, Brown, or other minority ethnic backgrounds.
    • 37% of children were disabled, learning disabled, or neurodiverse.
    • 65% had been through the care system.
    • 10% were from the Gypsy, Roma, and Traveller (GRT) community.

    For the latter, their experience was much worse. The HMIP report said:

    Only 17% [of disabled children] compared with 55% of other children said it was normally quiet enough to relax or sleep at night and just 22% compared with 66% that they usually spent more than two hours out of their cells on weekdays. These children would have had a range of learning disabilities or neurodiverse conditions and their poorer perceptions needed to be understood and addressed.

    Then, Cookham Wood was also detaining what HMIP called 15 “foreign national children” – likely to be refugees or asylum seekers. The report said:

    Services for these children had deteriorated since the previous inspection. Home Office immigration enforcement staff no longer visited for immigration surgeries, though this was mitigated in part by quarterly visits from the immigration prison team… Children with no family in the UK could have a free five-minute phone call each month and one child was using this opportunity.

    However, the report failed to spell out the fact that 15 refugee or asylum-seeking children equated to just under 20% of the total number being detained.

    The report, though, identified the polar opposite of the state of Cookham Wood.

    Blame the bosses, not the kids

    The Cedar unit is a 17-bed resettlement block, which is separate from Cookham Wood’s main building. HMIP said in its report:

    The one area of strength at the establishment was Cedar unit (the resettlement/release on temporary licence unit). The unit had benefited from consistent leadership from a custodial manager with a clear vision who worked effectively with leaders in the resettlement team to implement an innovative approach to release on temporary licence for education, work and promoting family ties. Cedar unit was an oasis of calm and effective behaviour management in comparison to the rest of the establishment, and for the eight children living on the unit, it provided a potential opportunity to change their lives for the better.

    It beggars belief that one part of Cookham Wood can be so different from another. However, HMIP clearly identified what the problem was: the bosses:

    The newly appointed governor had been in post for about six weeks and he indicated to us that he was aware of the problems in the establishment. The leadership team, however, lacked cohesion and had failed to drive up standards. In this context we were also surprised to be told that since the governor had been appointed, no senior leader from the Youth Custody Service had visited to make their own assessment of the establishment’s evident failings.

    It noted:

    Many staff were open about how little confidence they had in leaders and managers. We were informed of some staffing shortfalls, but also that around 360 staff were currently employed at Cookham Wood. This included 24 senior leaders. In addition, there were several more working for partners in health care, education, and other areas.

    Abolition is the only answer

    HMIP concluded that:

    The fact that such rich a resource was delivering such an unacceptable service to just 77 children indicated that much of it was being wasted, underused or needed reorganising to improve outcomes at the site.

    The boss of HMIP Charlie Taylor said:

    These findings would be deeply troubling in any prison, but given that Cookham Wood holds children, they were completely unacceptable. As a result, I had no choice but to write to the secretary of state immediately after the inspection and invoke the urgent notification process.

    The other problem with Cookham Wood is that its appalling conditions and treatment of people are hardly isolated in the prison estate. As the Canary reported, HMIP recently described conditions at Eastwood Park women’s and young offenders’ prison in Bristol as “terrible” and “wholly unsuitable”. At least four people have died at the prison in the past year.

    As Tom Anderson wrote:

    it is not just one rotten prison, or a few violent officers… The problem is the whole carceral system, which is hardwired to dehumanise and brutalise the people it imprisons.

    Of course, the problem is bigger than that – it is our entire criminal justice system which is broken. When somewhere like Cookham Wood can detain children – many of them marginalised and vulnerable – in such appalling conditions, it’s a damning indictment of the prison system.

    But perhaps the bigger question is, how have we, as a society, reached a point where the state is so readily imprisoning children, anyway?

    Featured image via Channel 4 News – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • There’s going to be an inquiry into the DWP’s benefit fraud claims – and it’s long overdue

    As the Canary has repeatedly written, the idea of so-called rampant ‘benefit fraud’ is a right-wing myth. It’s partly based on literal guesswork from the Department for Work and Pensions (DWP). Now, a parliamentary committee has cottoned onto this fact – and is forcing the DWP to be subject to an inquiry. Crucially, the committee wants to hear from people directly affected by the department’s mendacious agenda around benefit fraud.

    DWP: under the spotlight in parliament

    The Public Accounts Committee (PAC) has launched an inquiry into the DWP which will look at benefit fraud and error in 2022-23. Specifically, PAC will investigate the department’s:

    performance during that period, on job support programmes to help the recovery from the pandemic, and whether the record on fraud and error in benefit delivery has improved.

    Spoiler alert: PAC doesn’t think the DWP’s record on benefit fraud and error has improved. In November 2022, it published a scathing report on the issue. PAC said:

    DWP maintains that current fraud levels are still due to COVID-19 but is unable to say when levels of fraud and error will fall. It has repeatedly claimed that there is increasing propensity to fraud in society in general since the pandemic but is unable to point to convincing evidence why this should lead to increasing losses to the taxpayer.

    This lack of “convincing evidence” is probably because the DWP has none.

    Benefit fraud: all smoke and mirrors

    As the Canary previously reported, half a billion pounds of “low suspicion” fraud in 2020/21 that the DWP claimed was fraud was based on its assumptions. Moreover, what the DWP calls “high suspicion” fraud was also based on no evidence. So, again the DWP reported potentially billions of pounds of fraud here, without evidence.

    Overall, the actual figure of real fraud compared to what the DWP assumes is fraud (but may often not be) is likely a lot lower than the £8.3bn it publicly declared.

    PAC has realised this, too. It said the DWP:

    assumes that all claims from Universal Credit claimants who choose “not to engage” with DWP’s fraud and error measurement exercises are fraudulent but admits that it has no statistically significant information to support this view.

    However, the committee also recognises that this isn’t the only problem with the DWP’s approach to benefit fraud and error. It noted:

    At the other end of the problem, benefits underpayments can lead to severe hardship. The Department estimates that 237,000 pensioners have been underpaid a total of £1.46 billion in State Pension, with underpayments going back as far as 1985. Work to rectify this is behind schedule and “efforts to correct the systemic underpayment of State Pension are too slow to meaningfully put things right”, and “will be too little, too late for many affected pensioners”.

    Of course, the DWP also systemically underpays both working-age and health and disability-related benefit claimants. Its accounts show that in 2022-23, it underpaid claimants £3.3bn of the money they were entitled to, including:

    • £680m of Universal Credit.
    • £900m of Personal Independence Payment (PIP).
    • £670m of State Pension.

    Of the £3.3bn, £1.2bn was the DWP’s fault, and the rest was (it claimed) due to “claimant error”.

    A long-overdue inquiry

    All this means that an inquiry into the DWP’s claims around benefit fraud and error is long overdue. Overall, PAC said:

    The Committee remains unconvinced that DWP’s systems overall are “adequate to detect further underpayments before they build up into major issues in future”.

    The committee also wants people to get involved. Guidelines state that people who have lived experience of the benefits system can submit evidence. You can do that here, and the deadline is Monday 24 August.

    The push to tackle ‘benefit fraud’ has been one of the most toxic political agendas of recent years. It’s played into ‘scrounger’ narratives which have allowed successive governments to cut benefits – to the point where the UN accused them of “grave” and “systematic” violations of disabled people’s rights. So, PAC’s inquiry into this area of the DWP cannot come soon enough.

    Featured image via VideoBlogg Productions/the Canary, and Wikimedia

    By Steve Topple

    This post was originally published on Canary.

  • Parliament will finally debate PIP and how the DWP manages it. MPs must be there.

    A petition over Personal Independence Payment (PIP), a benefit from the Department for Work and Pensions (DWP), has sparked a parliamentary debate. It’s a surprising development, because the petition didn’t reach the 100,000 signatures usually required for this. However, it presents as an opportunity for MPs and claimants to publicise the huge problems with PIP.

    PIP: dogged by controversy

    PIP is a benefit for chronically ill, sick and disabled people. It’s supposed to help with the extra costs of living with illnesses or impairments. As the Canary reported in November 2022, Keely Santos set up a petition calling on the government to conduct a “full review” of the PIP application process. It said that the benefit’s:

    application and assessment process is inhumane and degrading. We believe Capita and Atos are not fit for purpose to be contracted as independent assessors, and that this leads to many people being unfairly denied benefits.

    PIP has been dogged by controversy. From stealth real-terms cuts to huge rates of successful appeals, the benefit is a shambles. Also, between April 2013 and 30 April 2018, around 12 disabled/chronically ill people a day died waiting for the DWP’s decision on their applications.

    DWP: mismanagement

    Then there’s the DWP’s assessment process for PIP, which has been unfit for purpose for years. Independent Assessment Services (IAS), formally ATOS, is the company that does PIP health assessments for the DWP. However, this area of the benefit has been a mess, too. Official probes have shown “dishonest” assessment reports and high rates of appeal wins.

    Plus, more and more people are complaining to the independent government watchdog about PIP – namely over:

    • The assessment process.
    • Assessors’ interpretation of medical evidence.
    • Payment delays.
    • DWP “misadvice”.

    The DWP’s management of PIP has been such a disaster that it prompted the UN to say PIP had effectively reduced the number of people who should have been entitled to health-related benefits, negatively impacting on people’s living standards.

    A debate that MPs must attend

    So, Santos’s petition is asking the government to address all of that.

    The petition also noted the high number of claimant appeals over DWP PIP decisions. Figures for July-September 2022 show that 68% of tribunals went in the claimants’ favour. They also reveal that the number of people appealing a decision in the first place went up by 119% year-on-year.

    Overall, PIP is a mess. Now, thanks to Santos, parliament will debate the state of the benefit and how the DWP manages it.

    The debate will take place on Monday 4 September. The Canary is encouraging everyone affected by PIP, or the DWP, to write to their MP. They should ask them to attend the debate on their behalf. You can do this via email using the Write To Them website here.

    Featured image via Maurice – Wikimedia, resized to 770×403 under licence CC BY 2.0, and Wikimedia

    By Steve Topple

    This post was originally published on Canary.

  • Disabled mothers have had to take it upon themselves to start defending their basic rights

    A campaign group led by chronically ill and disabled mothers has launched a ‘Charter of Rights’. It is in relation to how social services and family courts treat them and their children. However, the charter shouldn’t be needed in the first place – as all the campaigners are ultimately calling for is the respect and implementation of their fundamental human rights. Sadly, with discrimination in social and child services rampant, these mothers and their allies have little choice.

    Social services: providing a wholesale marketplace for children

    As the Canary documented in a series of articles:

    The state’s adoption of children has effectively become an industry in recent years. However, not all mothers and caregivers are subject to social services taking their children from them. This is because the state is disproportionately targeting women the system marginalises – be it due to ethnicity, class, disability, or chronic illness. It shows that systemic racism, ableism and classism pervades a service that is supposed to support children, not snatch them from their mothers. And the driver for all this is private profit.

    In the articles, we looked at how:

    However, one campaign group is fighting back against this discrimination with a plan that outlines just what needs to change.

    A disabled mother’s charter

    The Disabled Mothers’ Rights Campaign (DMRC), part of campaign group WinVisible (Women with Visible and Invisible Disabilities), has drafted the charter. Organisations that have endorsed it include:

    • The Alliance for Inclusive Education.
    • Camden Disability Action.
    • Inclusion London.
    • The English Collective of Prostitutes.
    • Global Women’s Strike.

    Women with lived experience of disability and social services have created the charter. It covers:

    • What support the state should provide chronically ill and disabled mothers with.
    • The promotion of their human rights.
    • Ensuring social services and courts’ systems are accessible and public.
    • What councils, social services, and the family courts must do to end the discrimination and abuse of power disabled women face at these institutions’ hands.

    If you speak to women affected by social services, it becomes clear just why this charter is so sorely needed.

    Forced adoptions due to disability: not the exception

    5News did an investigation with Support Not Separation and DMRC. It found, for example, that social services are 54 times more likely to take the children of learning-disabled parents into care. 5News also found:

    in the last three years, almost five-and-a-half thousand times where a parent’s physical disability was a factor in a child being taken into care.

    One person 5News spoke to was Jean. Social services took her two-year-old daughter off her in a forced adoption. However, they failed to consider Jean’s chronic illness, Ehlers-Danlos syndrome, when making the judgement – and an appeal later said social services should have done so.

    Jean’s daughter Tye told 5News:

    I’d grown up being told I was adopted. I had always been told you [Jean] weren’t capable of looking after me… that you just wouldn’t have been a good parent.

    This was clearly not the case. Jean and Tye are now reunited:

    So, rightly, DMRC said in a press release that the charter is “urgently needed”. This is, according to the group, also at a time when:

    • Disabled families are disproportionately targeted by cuts in support services, poverty-line benefits and the cost of living crisis, in particular disabled single mothers and Black and Brown families.
    • Poverty is conflated with ‘neglect’ and children are removed from loving families, with over 82,000 children now in ‘care’…
    • Profiteer companies such as the Hesley Group are charging councils millions each year running residential homes where children who are disabled /of colour are neglected and abused.

    A sorely-needed charter

    The charter has six very clear points:

    Women with disabilities have a right to family life – to start a family and keep our children.

    DMRC said:

    Our children have a right to be raised by their mother and family, and not be denied her love and care due to disability prejudice.

    “We have a right not to be discriminated against”.

    DMRC said the state and system must not discriminate against mothers:

    just for being disabled, of colour, immigrant, LGBTQI+, working class, single, on benefits, survivors of violence and abuse, or [because] we grew up in care.

    “Support services under the Care Act and Children Act must be obligatory”. 

    DMRC said:

    We must be given information about how to get that support, and get non-discriminatory assessment of our needs as a family.

    “All meetings and hearings in ‘child protection’ and/or family court proceedings must be made accessible”.

    DMRC said this was:

    so we can have our say.

    “Court hearings must be open to the public”.

    DMRC said this was:

    so courts can be accountable for the treatment we are receiving.

    “Mothers, overwhelmingly the primary carers, must never be cut off benefits”. 

    DMRC said:

    We support the call for a Care Income for the work of raising children. Child poverty is state neglect not mothers’ neglect.

    You’d think these six points were fairly standard and already in place in the system. However, evidence of the sort 5News found, and the work of groups like Support Not Separation, show they aren’t. So, mothers and campaigners had little choice but to take action.

    ‘Privatised child removal’

    Tracey Norton from DMRC told the Canary:

    We have come together to make the situation of disabled mothers and our children visible. The universal bond between mother and child must be respected and supported financially, and in every way, not the privatised child removal industry which disproportionately takes children who are disabled/of colour and targets disabled mothers as harmful.

    Another organisation supporting the DMRC charter is the Chronic Collaboration. It campaigns around chronic illness and intersecting issues. The group previously protested outside the National Institute for Clinical Excellence (NICE) and at parliament. Its founder Nicola Jeffery is a chronically ill and disabled mother who has lived experience of battling social services and the courts to keep her child. She told the Canary:

    This much needed charter along with its five demands are crucial in firstly highlighting the discriminatory proportion of disabled mothers that are having their children taken into care, and secondly the complete lack of financial support disabled mothers can be subjected to – often leading to state-sanctioned poverty.

    The charter and its demands, as simple as they may seem in an open, democratic country are so often being neglected here in the UK, and around the world. This has led to constant discrimination against disabled mothers with an often-automatic, systemic attitude that disabled women are unfit mothers – and are therefore penalised simply for asking for help or support.

    Social services: not fit for purpose

    In the end, the Charter of Rights serves to outline just how the system should treat chronically ill and disabled mothers. DMRC has done an excellent job of drawing together people’s lived experience and turning it into an accessible, succinct call to action. However, the group shouldn’t have had to do this in the first place.

    The fact that in 21st century Britain, chronically ill and disabled mothers – along with other marginalised yet apparently ‘protected’ groups – are treated in the same way as they were in the times of eugenics, is damning. Sociologist Angela Frederick argued in a paper that the legacy of eugenics for marginalised women persists to this day. However, she summed up by saying:

    Despite the gains of the disability rights movement, disabled women still receive undue scrutiny about their right to mother. Instead of asking whether or not disabled mothers should have children, we should be asking how we can help their families to thrive.

    Surely, this and the system’s adherence to DMRC’s charter aren’t too much to ask?

    Featured image via Disabled Mothers’ Rights Campaign

    By Steve Topple

  • More evidence emerges that closing train ticket offices is the thin end of a disastrous wedge for disabled people

    More evidence has emerged showing just how inaccessible the UK rail network is for many chronically ill and disabled people. It comes amid the scandal of the government-backed train operators’ plan to close the majority of ticket offices at England’s stations.

    Britain’s train network: not completely accessible

    The Office for Rail and Road (ORR) is the government’s independent regulator – specifically here, of train travel. It has released its annual report into passengers’ experiences of the rail network. The findings for chronically ill and disabled people were not good.

    Part of the report looked at the Passenger Assist scheme. As the ORR wrote, this:

    is a service that enables passengers with disabilities, or other people who may require help, to book and receive assistance to enable them to make their rail journey. Rail companies’ participation in Passenger Assist is mandated through the regulatory requirement to have an Accessible Travel Policy (ATP) approved by the Office of Rail and Road (ORR). The purpose of Passenger Assist is to make rail travel accessible to everyone. Passenger Assist is open to anyone who needs assistance; this could be due to a disability or long-term health condition, a temporary health issue or old age.

    So, the ORR looked at people’s experiences of Passenger Assist. In its research, speaking with over 8,000 people, the ORR found that the majority of people were happy their experience. It noted that:

    • 90% of people were satisfied with “the entire process of Passenger Assist throughout the passenger’s journey”.
    • 81% got “all of the assistance types that they booked”.

    However, there was a significant number of people who experienced issues. Specifically, the ORR found that:

    there are still too many passengers receiving only some (10%), or none (8%) of the assistance that they booked. This means that just under one in five (18%) did not receive all the assistance that they had booked for their journey.

    It also found that 26% of people “who booked a taxi service to provide assistance to or from an inaccessible station” did not actually get it. 14% of people were not satisfied with Passenger Assist when it involved an unstaffed station.

    Chronically ill and disabled people: at the sharp end of train issues

    Moreover, there were specific problems for chronically ill and disabled people. For example, one disabled survey respondent said:

    It took them far too long to get the equipment for the ramp to get me off the train. I then needed the toilet, a porter came but he had no key. I wet myself as I waited 15 minutes for a key to be found for the toilet.

    Their experience is shown in the ORR’s figures. For example:

    • 15% of people did not get the assistance they booked to alight the train.
    • 16% did not get their assistance to the wheelchair area.
    • 16% did not get assistance “to and from connecting services”.
    • 17% did not get assistance to get “in/out of the station”.

    And, as the ORR also added:

    Those whose journey experience would be made more accessible using a mobility aid or wheelchair (11%), places to rest (11%), accessible / blue badge parking (10%), seats with backs and arms (10%) and step free access (9%) were more likely to state that they didn’t receive this assistance, where they had booked it.

    So, overall, the UK’s rail network is still not completely accessible. And now, train operators want to close ticket offices as well.

    Ticket office closures: compounding the inaccessibility

    As the Canary previously reported, 23% of disabled people are internet non-users. Ticket vending machines are often inaccessible. Plus, wheelchair users can only get their 50% discount on tickets from an office. So, even before disabled people get to an inaccessible station, and don’t get the assistance they booked, they’ll now have an additional barrier via train operators closing ticket offices.

    The UK rail network should be accessible for all. However, it currently isn’t, as the ORR report shows. Train operators closing ticket offices will merely compound this issue.

    Featured image via Wikimedia and the Canary

    By Steve Topple

    This post was originally published on Canary.

  • The Guardian has thrown the ME community under the bus, using bias and misinformation

    The Guardian has published a new article on the disease myalgic encephalomyelitis (ME). However, the original copy was littered with errors. Moreover, it landed on the side of discredited medical professionals and their supposed treatments – yet failed to mention their own conflicts of interest. Overall, the Guardian‘s article was yet another hit piece on a community whom the medical establishment, state, and society have abused for decades.

    ME: not all in people’s heads

    Some people refer to ME as chronic fatigue syndrome (CFS). It is a debilitating and poorly-treated chronic, systemic neuroimmune disease that affects every aspect of the patient’s lives. You can read more about ME symptoms here. The disease has been at the centre of various scandals for decades. These include medical professionals saying it was a psychological illness – that is, that it’s ‘all in people’s heads’.

    Recently, one scandal involved the National Institute for Clinical Excellence (NICE). The Canary reported extensively on this. Essentially, in 2021 NICE was going to update its treatment guidelines for ME. It hadn’t done this since 2007. The old guidelines recommended doctors treat people living with ME with graded exercise therapy (GET) and cognitive behavioural therapy (CBT). Patients and medical professionals generally say GET and CBT are either harmful or ineffective in ME.

    So, NICE’s new guidelines removed these – but not without delays, lobbying by proponents of the discredited treatments, and the need for protests. All this caused people living with ME anger and distress. However, some medical professionals seem hell-bent on claiming GET and CBT do work.

    A new ‘study’, allegedly

    The Guardian reported on a new study that claim’s NICE’s guidelines are flawed. This research calls into question the guidelines and the processes NICE followed. The study claims that NICE’s:

    U-turn in recommendations from the previous 2007 guideline is controversial.

    It then lists various reasons why. The study overview concludes:

    that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.

    So, the Guardian reported on this. However, the article was shoddy, biased, and filled with errors – so much so, the Guardian had to correct parts of it.

    The Guardian‘s latest on ME: littered with errors

    First, before it was updated the original Guardian article was littered with both errors and bad reportage. For example:

    • It said “25,000 people in the UK” live with ME – it is actually at least 250,000, if not higher. This was a clear typo.
    • It spoke as if CFS and ME are two different conditions, but then said ME is “also called CFS”.
    • The symptoms it lists did not include a hallmark symptom, which is post-exertional malaise (PEM) – a worsening of symptoms.

    However, these were not the main problems with the Guardian‘s original ME article.

    First, its use of language went against both campaigners’ and charities’ advice on ME. The Guardian used “chronic fatigue” in both the original headline and opening paragraph. This is not ME: chronic fatigue is a symptom, not an illness. The Guardian knows this – as on other occasions it calls ME ‘ME’, or ‘chronic fatigue syndrome’. It has since updated the article to use ‘ME/CFS’ and ‘chronic fatigue syndrome’.

    The article also used a picture of a woman holding her head as its main image. Again, this is something patients and campaigners have said the media should not do, as it undermines the severity of the illness. Moreover, the entire article managed not once to include a patient’s voice – but did include a doctor interviewee claiming:

    Many patients are sensitive to the inference psychological factors such as stress may contribute to the condition and dismiss psychological treatments such as cognitive behavioural therapy

    This is something the majority of patients would argue is false – and gaslighting.

    Hiding conflicts of interest?

    Perhaps most damningly, though, and the Guardian failed to mention that the main doctor it quoted on the new study had a glaring conflict of interest.

    It wrote that:

    One of the study’s lead authors, Prof Trudie Chalder from the psychiatry department at King’s College London, said: “The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions.

    Of course, what the Guardian failed to mention is Chalder was a researcher on the original study that said GET and CBT worked on ME patients – the study NICE removed from its guidelines.

    The Guardian also failed to mention that four of the new paper’s other authors were also researchers on the original study – Peter White, Michael Sharpe, Brian Angus, and Maurice Murphy. The Guardian also failed to mention that another author on the new paper, Simon Wessely, was also involved in the original study on GET and CBT – providing feedback on it.

    At best, the litany of errors and bad reporting in the article could be put down to lackadaisical editorial standards. At worst, some may view the Guardian article as intentional gaslighting of people living with ME.

    However, the biggest issue with all this was not the Guardian‘s coverage, but the new study itself.

    Psychologising the physical

    The original study Chalder, White, and Sharpe worked on was called the PACE Trial. The Canary has reported extensively on how:

    Overall, patients, advocates, politicians, and many medical professionals believe the PACE Trial was a con to keep ME as a psychological illness, and to deny people benefits and private health insurance. So, it is of little wonder that Chalder, Sharpe, White, Wessely, and others continue to push back against the discreditation of their research. As the Canary previously wrote:

    One prominent ME doctor called… [the PACE Trial] “scientific and financial fraud”. An MP said it was potentially one of the “biggest medical scandals of the 21st century”.

    This new study is the latest attempt to keep ME psychological. It’s not the only thing doing this, either. Proponents of the psychologisation of ME also privately lobbied NICE to keep its old guidelines – as the Canary previously revealed.

    Flawed studies, flawed guidelines

    However, these medical professionals’ latest attempt to maintain their discredited status quo is limp at best – and at worst, once again catastrophically flawed. As ME researcher Dr Keith Geraghty wrote on Twitter:

    For some time now, I have been saying that Evidence-Based Medicine is as much a ‘political process’ as a ‘scientific’ one: above we see authors unhappy with their star RCTs [randomised control trials] being downgraded as weak evidence, challenging the procedures of an independent NICE treatment review.

    …49 author names on the 2023 ‘NICE Challenge Paper’, many wedded to a CBT Model of ME/CFS… are in fact a lobby group, and many of their points of challenge to NICE require robust and careful rebuttal, as many are factually incorrect.

    NICE also robustly hit back at the new study’s claims, telling the Guardian:

    We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.

    However, none of this should detract from the fact that the new NICE guidelines still have numerous issues. You can read the Canary‘s full analysis of them here. Overall, though, and as we previously wrote:

    Yes, NICE has removed GET. On paper, this looks like a breakthrough, but in practice it’s far from that – and it really changes very little. Doctors could well still cause patients harm. Justice for those already harmed seems a long way off. And nothing NICE has done will begin to change the deeply-held views among some medical professionals that ME is ‘all in people’s heads’.

    So, with NICE guidelines still flawed, some medical professionals actively working against patients, and the media either toeing the line or making myriad errors in its reporting, what are people living with ME to do?

    ME: fight the good fight

    Patients, their families and loved ones, and advocates are used to media coverage like the Guardian‘s. They’re also used to the institutionalised gaslighting, discrimination, and negativity from medical professionals. People living with ME are also used to most of the rest of society, and the system and state, isolating them.

    More than this, however, what the ME community is well used to is standing up for itself. People living with this disease will continue to fight for their rights, they’ll continue to push back against the psychologisation of their illness, and they’ll do all that while supporting each other, too. No amount of propaganda from medical professionals and the media will change that.

    Featured image via the Guardian – screengrab

    By Steve Topple

    This post was originally published on Canary.

  • A disabled person nailed why train ticket office closures are a disaster

    The Tory government has greenlit train operators to close the majority of ticket offices at stations. As is usual, bosses will do this claiming it won’t impact on passengers. Of course, the reality is very different – not least for chronically ill, visually impaired, and disabled people. So, one campaigner pulled apart the disastrous ticket office closures live on Channel 4 News.

    Ticket office closures: months in the making

    As the Canary has been documenting, the Tories began planning to allow train operators to close ticket offices in 2022. However, in recent weeks transport secretary Mark Harper has pressed ‘go’ on the scheme. We only knew this originally thanks to rail passenger group the Association of British Commuters (ABC).

    The government has to sign the plan off, as there are regulations governing ticket offices. Of course, the arguments from the Tories and the companies include that only 12% of people buy tickets at offices. Train operators also claim that staff will be redeployed on stations.

    However, campaigners, politicians, the public, and trade unions have all kicked off about the plan. The National Union of Rail, Transport, and Maritime Workers (RMT) has warned the Tories and train operators it will not “meekly sit by” and allow them to get away with this. But at the centre of this brewing scandal are chronically ill, disabled, and marginalised people.

    Disabled people are not having it

    As the Canary previously wrote, ticket office closures will hit disabled people particularly hard. So, on 6 July, campaigns and comms manager at campaign group Transport For All, Katie Pennick, made an argument as to why closing them is such a bad idea – and she made it brilliantly.

    First, Pennick noted that:

    disabled people are so much more likely to rely upon the ticket office to make… purchases.

    Why, you may ask? Well, apart from physical accessibility issues – as Pennick put it, “having to… trek up and down the platform” for a ticket machine – a lot of disabled people don’t have access to the internet:

    23% of disabled people are internet non-users – they don’t access the internet, can’t book online. The alternative is to use ticket vending machines which are also inaccessible to so many disabled people – out of height, for example, for wheelchair users.

    Moreover, another issue is – as Pennick pointed out – that the 50% ticket discount for wheelchair users is only available from ticket offices. However, there’s a deeper issue here, too.

    Victorian infrastructure, Victorian discrimination

    Pennick summed up ticket office closures by saying:

    We have Victorian infrastructure that is hideously inaccessible, we’ve got steps all over the place, and we need people to get out the manual boarding ramps, to sight-guide people through the station, to provide support for people who need it.

    Indeed, England’s rail network is still highly inaccessible for chronically ill, disabled, and visually impaired people. As the Guardian reported, research by the ABC found:

    More than one in 10 railways stations in Britain do not allow disabled passengers to “turn up and go” on some or all train services, according to research by campaigners.

    The accessibility problems are caused by a combination of “driver-only operation” (DOO) trains and unstaffed stations, which result in a lack of staff to help disabled passengers board their train. Some stations have no step-free access.

    At worst, this lack of accessibility can be fatal.

    Is a consultation on ticket office closures enough?

    A train hit and killed visually impaired man Cleveland Gervais in February 2020. This was at Eden Park station in south London. As lawyers Leigh Day wrote:

    He had been waiting for the train to arrive and moved closer to the edge of the platform after its impending arrival was announced because he was unaware of where the edge of the platform was.

    Eden Park station did not have tactile paving at the edge of platforms. They’re often yellow paving slabs with raised bumps in them. An inquest into his death concluded that this lack of tactile paving “caused or contributed” to Cleveland’s death. Overall, England’s rail network is already dangerously inaccessible for disabled people. Ticket office closures will only compound the issue.

    The government has launched a consultation on the plans. Also, as the Canary previously wrote, the independent rail regulator could intervene to stop the closures. Moreover, Harper and the Tories could stop the plan themselves. Of course, they won’t, as it will save train operators money – and acting in the interests of corporations is the Tories’ usual MO.

    It is sadly unlikely the government’s consultation will make any difference to ticket office closures. Successive governments have decimated England’s rail network for decades. Privatisation has been a disaster. And now, we’re seeing the fallout from this: the rail system on its knees, and the Tories and train operators scrabbling around to save face while desperately hoarding their profits.

    Disabled people are always expendable to governments – and closing ticket offices will just be the next move in the continued degradation of their most fundamental human rights.

    Featured image via Sky News – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • Disabled mothers are fighting back against social services and the adoption industry

    Disabled and marginalised mothers are coming together to fight back against social services‘ institutional discrimination against them. They’re doing it not only to protect their children and themselves but also to push for the support to which they’re entitled.

    Social services and adoption: toxic sectors

    As the Canary documented in a series of articles:

    The state’s adoption of children has effectively become an industry in recent years. However, not all mothers and caregivers are subject to social services taking their children from them. This is because the state is disproportionately targeting women the system marginalises – be it due to ethnicity, class, disability, or chronic illness. It shows that systemic racism, ableism and classism pervades a service that is supposed to support children, not snatch them from their mothers. And the driver for all this is private profit.

    In the articles, we looked at how:

    As the Canary previously wrote:

    Adoption in the UK is little more than a wholesale marketplace for children. It’s easy to see why those controlling it target marginalised children. When the price tag on a child’s head is £100,000, private companies will want the ones that either get them the easiest sales (dual heritage children) or easiest wins (children of chronically ill and disabled mothers who don’t always have the capacity to fight). Social services, medical professionals, and courts are complicit in this. They do the bidding of these private child snatchers without a thought for the impact on mothers and their kids.

    However, one campaign group is fighting back against this discrimination.

    Disabled mothers have rights

    Tracey Norton is the coordinator of the Disabled Mothers’ Rights Campaign – part of campaign group WinVisible (Women with Visible and Invisible Disabilities). The group aims to bring “disabled mothers together” to fight against the state taking their children away. The group told the Canary it is fighting to:

    stop the cruelty and discrimination we face from Council social services and the family courts taking our children away.

    It also wants:

    the support from official agencies which we are entitled to by law.

    Once a month, on the first Wednesday, the group joins a coalition of organisations called Support Not Separation to protest outside the Central Family Court in London:

    Now, the Disabled Mothers’ Rights Campaign is taking things a step further.

    Reclaiming their rights

    The group is launching a “Charter of Rights” on Wednesday 12 July:

    Disabled Mothers’ Rights Campaign says on its website that:

    Disabled women are not unfit mothers. End discrimination by social services and the family courts. Our legal rights – and our children’s – must be implemented! DMRC has come together to make disabled mothers and our children more visible and to raise our voices in the disability movement and in the community generally. The Charter of Rights aims to spell out what we are entitled to and what councils and the family courts must do to end the discrimination and hostility we face, especially if we’re also single, of colour, working-class, LGBTQI+, a victim of domestic violence…

    The event on 12 July will let people affected by social services and adoption come together. The group wants to discuss what mothers can do to protect themselves and their children and how they can reclaim the support they are entitled to from the state.

    Tracey told the Canary:

    We have come together to make the situation of disabled mothers and our children visible. We are launching a Charter of Rights which will spell out what support we are entitled to, and what councils and the family courts must do to end the discrimination and abuse of power we face at their hands, especially if we’re also single, of colour, immigrant, working-class, a victim of domestic violence, a sex worker and/or were in care as children. The universal bond between mother and child must be respected and supported, financially and in every way, not the privatised child removal industry where disabled children/of colour are placed disproportionately.

    The state of social services and family courts in the UK is dire. As a system, it routinely targets, demonises, and ultimately persecutes marginalised women – and snatches their children away from them. Disabled Mothers’ Rights Campaign’s upcoming Charter of Rights is the first step in redressing the balance.

    Disabled Mothers’ Rights Campaign is holding the launch event at Crossroads Women’s Centre, 25 Wolsey Mews, London NW5 2DX, and it will also be on Zoom.

    Featured image via Support Not Separation 

    By Steve Topple

    This post was originally published on Canary.

  • The corporate media just let the Tories off the hook over train ticket office closures

    The Tory government has confirmed that it’s letting train operators close countless rail ticket offices across England. The plans were originally leaked by campaign group the Association of British Commuters (ABC). However, much of the corporate media has absolved the government of responsibility in this – framing the train operators as wholly responsible.

    Ticket office closures: greenlit by the Tories

    As the Canary previously reported, the ABC leaked the news on 26 June that transport secretary Mark Harper was about to green-light train operators mass-closing ticket offices. This has been on the cards since at least September 2022. The Sunday Telegraph reported at the time that the government was changing East Midlands Railway’s contract – ‘hardwiring’ ticket office closures into it as part of its broader industry plans. The paper also reported back then:

    sources saying the conditions will be replicated across the country.

    Train operators and the government argue that only 12% of people buy tickets via station offices. However, many of these are likely to be disabled people or other marginalised groups. Disability rights activist Paula Peters previously told the Canary:

    Taking away ticket offices is another barrier to exclude and marginalise disabled people from travelling, ticket machines are often broken and inaccessible to use, visually impaired people can’t use ticket machines and many with a learning impairment can’t either.

    Weeks ago, Harper reportedly gave a mandate for train operators to go-ahead with ticket office closures, as there are regulations surrounding this. The ABC has attempted to intervene in the government and train operator’s decision. It and other parties wrote an open letter to the Office of Rail and Road (ORR, the government’s independent regulator) and the Equality and Human Rights Commission (EHRC). It expressed concern at the ticket office closure plans, and asked both organisations to intervene.

    However, it appeared to be too little, too late. On Tuesday 5 July the ABC revealed that Harper had signed off on the closures.

    Corporate media reporting

    The story has been widely reported in the corporate media. Sky News noted that:

    the Rail Delivery Group (RDG), which represents the train companies, is due to unveil the proposals in an attempt to save money in the wake of the COVID pandemic causing a drop in revenue.

    BBC News reported:

    Train companies are pressing ahead with plans to close hundreds of station ticket offices across England over the next three years.

    Meanwhile, the Guardian said:

    Train operators told staff on Wednesday morning of proposals to shut down almost all of the 1,007 remaining offices, bar at the busiest stations, within three years.

    However, some of the mainstream media failed to mention that the closures were not only a government plan, but that it also has the power to stop them.

    For example, not once in the BBC‘s article did it state that the idea came from the Tory government, nor that it had to approve it before train operators could make the closures. The Independent did similar, putting the blame on the RDG. Meanwhile, the Times went further – not only failing to mention the government’s role (except in quotes from opposition voices) but also calling the passenger-led ABC a “lobby group”.

    Even allegedly left-leaning media’s reporting of ticket office closures was limp, at best. The Guardian noted that the plan had been “pushed by the government to save costs”. The Mirror was more robust – placing the blame squarely at the Tories’ door. It noted that a public consultation the government will be running could derail the plans.

    However, nearly all the corporate media failed to mention there is a legal case for stopping the Tories and train operators closing stations.

    A legal basis for stopping the closures?

    The ABC noted in a statement that:

    the ORR informed us that it “has not seen any plans or given assurances on any matter connected with [the closures].” The EHRC also confirmed that it had been excluded from these discussions despite recently meeting with the Department for Transport (DfT) about railway destaffing. Experts believe that “this alone raises serious questions about whether the DfT has been following due process regarding its public sector equality duty.” They say: “Unless the ORR acts immediately, the process will go forward without adequate equality assurances, and without the necessary retail and accessibility mitigations in place.”

    It went further in its open letter, stating that if the ORR and EHRC believed the government had breached its public sector equality duty, then the two organisations:

    must now take urgent action, including a public position on whether accessibility and retail mitigations are ready to go forward. If they do not believe this to be the case, they should call for an immediate pause to proceedings and prepare to make use of their full regulatory powers to intervene. This is the only way to ensure that rail modernisation plans are properly regulated and consistent with the public sector equality duty to ‘eliminate discrimination’ and ‘advance equality of opportunity.’

    In other words, the regulators could stop the ticket office closures in their tracks. As of 4pm on 5 July, the ORR had begun to intervene:

    No care for disabled and marginalised people

    Of course, for much of the corporate media, reporting on the fact that the Tories’ decision could potentially be unlawful is clearly a step too far. Alternatively, not giving the public this information is either an oversight, or a failure by journalists to grasp the complexities of the situation.

    Either way, the government and private train operators are pushing through one of the biggest changes in the rail network’s history. Yet some of the corporate media is failing in its duty to properly report on this. Disabled, chronically ill, and other marginalised people will bear the brunt of this disastrous decision. However, that fact seems to have escaped some journalists – because if it hadn’t, they’d have thoroughly pulled apart the Tories’ toxic plans.

    Featured image via pxfuel

    By Steve Topple

    This post was originally published on Canary.

  • Toxic Tories are already considering a real-terms Universal Credit cut next April

    The Tory government is already considering a real-terms benefits cut in April 2024. It could hit people claiming things like Universal Credit. This is because the Department for Work and Pensions (DWP) is reportedly thinking about only increasing benefits next year in line with wage increases – not inflation. The news comes off the back of this year’s ‘increase’ also not being enough to cover the cost of rising prices.

    DWP: another real-terms cut looming?

    The Telegraph broke the story. It noted that:

    Working age benefits could be cut in real terms as part of the Government’s drive to reduce public spending and fund tax cuts…

    Whitehall sources have told The Telegraph that ministers are considering uprating benefits in line with earnings instead of inflation next year, in a move that could save £1 billion.

    Health-related benefits like Personal Independence Payments (PIP) are excluded from this. However, what this means is that any DWP increase in benefits like Universal Credit next April won’t keep up with rising prices. Therefore, as the Telegraph notes, the department will be forcing a real-terms benefits cut on people. It said that:

    inflation currently stands at 8.7 per cent with regular pay rising by 7.2 per cent.

    Currently, the government is pushing the idea that rising wages are causing inflation to stay high. Health secretary Steve Barclay said as much recently as a reason not to meet NHS junior doctors’ demands of a 35% pay increase. The capitalist International Monetary Fund (IMF) has agreed. So, on this basis, the Tories will be aiming to see reduced wage growth for the rest of the year.

    Some forecasts put inflation at 5% by the end of 2023. If the government gets its way, this means pay will be rising by less than 5% – so benefits will go up by whatever amount that is. This will be disastrous for millions of families.

    Universal Credit consistently lower

    April 2023’s DWP benefits increase wasn’t really an increase at all. As the Canary previously reported, all the department did was take things like Universal Credit back to the value they were in April 2022:

    That is, if you’re on Universal Credit, your money will only be worth what it was a year ago. This is because everything is now more expensive.

    We also noted that actually, benefits still weren’t worth as much in real terms as they were before the coronavirus (Covid-19) pandemic. So, given that this year’s rise wasn’t a meaningful one at all, the DWP will leave people even worse off in April 2024 if it fails to increase benefits in line with inflation.

    However, earlier this year think tank the Institute for Fiscal Studies (IFS) also issued a stark warning. It’s one that has huge implications for the DWP’s latest potential move.

    Benefits not recovering until 2026?

    The IFS said in February that even with the current inflation-based increases in things like Universal Credit:

    Compared with their pre-pandemic… levels, real benefit rates were 7.6% lower in 2022… and will be 6.2% lower in 2023… and still 2.0% lower in 2024

    It also noted that:

    Astonishingly, it is not until April 2025 that benefit rates are set to recover the ground they lost over the autumn and winter of 2021

    That is, benefits will not be worth what they were before the pandemic, in real terms, until April 2025.

    However, the IFS’s assessment was based on the DWP increasing benefits like Universal Credit in line with inflation each April. Now, with the department eyeing up only raising them in line with wages from April 2024, it is likely that they will not return to their pre-pandemic value until at least 2026.

    Jumping through ever-tightening hoops

    All this comes after years of freezes and real-term cuts to benefit rates since 2016. Yet the Tories are still hell-bent on penalising people claiming social security anyway – under the guise of saving £1bn. This amount of money is, of course, a drop in the ocean of overall welfare expenditure. £1bn is also nothing in terms of the record-breaking public debt the Tories have racked up on all our behalf. In fact, it’s just 0.04% of the £2.6tn the government owes.

    So, the DWP pushing another real-terms benefits cut can only be seen as one thing: ideological. It’s a continuation of the ‘benefit scrounger’ narrative successive governments have pushed for years. Another real-terms benefit cut also plays into the Tories’ current drive to force as many people into work as possible – regardless of whether they can actually work or not. However, ultimately it is – as the Canary has repeatedly said – the DWP working as intended.

    There’s no such thing as a social security net in the UK. There are ever-tightening hoops people have to jump through, just to barely survive – all whilst politicians are determined to make people reliant on benefits an underclass in the UK.

    Featured image via VideoBlogg Productions/the Canary and Wikimedia 

    By Steve Topple

    This post was originally published on Canary.

  • Jeremy Corbyn won’t save us – nor should he be expected to

    Revolutionary change is not built by people, but by communities. As many oppressed communities will tell you, basing movements largely upon one leader will simply result in states destroying said leader. Martin Luther King and Fred Hampton could attest to that if they hadn’t been killed for their advocation for Black rights.

    Waiting on a saviour

    There are other movements we can turn to in order to see great leaders suppressed and overpowered by a seemingly irrepressible state. The crushing weight of the status quo often appears to stamp out any glowing embers that possible resistance might have conjured up.

    There is a particular tendency amongst left-wing white folks in the UK to rally around figures on the left as saviours. These figures are supposed to be the ones who come along and do the work. They’ll finally get rid of the Tories, save the NHS, and be good for a soundbite that does numbers on Twitter.

    But be they Jeremy Corbyn or Mick Lynch, that’s simply not going to happen.

    This is nothing to do with the proven talents of the likes of Corbyn or Lynch. Instead, it’s because unduly investing in one leader is no path to liberation. No one person can do it alone – nor should they have to.

    Ruminating and re-litigating

    My colleague Joe Glenton caused quite a stir when he asked Jeremy Corbyn supporters to accept what has come to pass over the Corbyn years and move on. Here at the Canary we’re hardly strangers to how Corbyn has been lied about and his supporters ridiculed. The man himself has been smeared, targeted, and subject to infuriating aspersions on both his politics and character. None of this is to criticise him, and I’d wager, he may well agree with what we’re saying.

    Given the Canary’s history of being a staunch supporter of Corbyn, it’s fair to say that our social media pages and comment sections are a reasonably accurate picture of the mood amongst supporters of Corbyn. One thing that hasn’t changed since 2019 is how much fans of Corbyn – and I would note, not necessarily Corbyn himself – insist on ruminating over how Corbyn was shoved out of mainstream politics.

    Now, you may well counter that it’s possible for people to care about more than one thing at once. However, our mentions demonstrate a huge amount of energy being sunk into re-litigating the Corbyn years.

    Parliamentary politics won’t save us

    It’s tempting to rally around political camps and leaders, but to do so is – as we should have learnt by now – a distraction that keeps us from finding connection and community with the people who suffer the most. Rallying around a memory of Corbyn is dangerous because it positions parliamentary politics as a legitimate source of change.

    Parliamentary politics will not save us. Voting cannot get us out of this mess. As many of us have asked so often since 2019, who on earth would you happily vote for anymore?

    Any kind of radical politics that actually helps the most vulnerable people in our society, that doesn’t operate through racism, classism, and transphobia, but through dismantling those very oppressions, is a politics that cannot – and will not – be found in Westminster.

    Perspective

    Our welfare system is operated by cruel and morally depraved people who are so determined to stamp out non-existent abuse of universal credit that they don’t mind stripping the meagre benefits of people struggling to feed themselves.

    Our government and media are throwing everything they have into demonising trans people whilst stripping back their basic healthcare.

    The Home Office has spent several administrations pouring money into the Prevent duty in the name of counter-terror. All this, to make sure Black and Brown Muslims are surveilled and abused as a matter of course.

    Our police forces operate with impunity and stifle dissent wherever they can. Those same police forces target and kill Black people with very little consequence. All conceivable levels of institutional power are engaged in anti-Blackness. Reports are then commissioned to confirm or deny such a thing, all whilst the anti-Blackness continues.

    Our country is paying to facilitate bombing Yemen. We’re raining down an apocalypse across regions Britain has already destabilised with decades of colonial and neocolonial violence. British companies are the ones making vast profits and causing the climate crisis, and are congratulated by the government and media for doing so.

    Consider all this. Consider the actual communities that are being crushed under this weight. Then, realise that it’s more than a little fucking annoying to see people rallying around the Corbyn years as though nothing else matters.

    A familiar blow

    For some of us, Corbyn’s demise as Labour leader was a blow. The man himself appears to have a proven track record politically and an admirable doggedness. He even has a rare ability amongst his skin folk to treat Black and Brown people as his equals. But, it wasn’t a blow that was unfamiliar.

    Poor Black and Brown people know what it is to be lied about, ignored, and shoved out of the way. We know because it happens to us. Not on the same scale, and perhaps not with the same level of scrutiny but it happens nonetheless.

    We know because our doctors don’t believe our pain. Our workplaces require us to not make too much of a fuss about racism. The people teaching our children are guided to report them to Prevent before they are to treat them as children. Whenever a famous Black or Brown person is caught in a racist storm, the rest of us get it in the neck.

    Our class identity is erased. We’re implicitly, and sometimes explicitly, shut out of queer spaces. Our disabilities are less often diagnosed, and are even questioned by the people who are supposed to treat us. Teachers look at us not with care, but with suspicion. Our fellow comrades fail to see us and our struggles, all while we’re supposed to be fighting for the same thing. These same comrades will often further marginalise and betray us.

    Communities, not leaders

    Corbyn was a breath of fresh air. There is more air to be taken in, fresh lungfuls, if we can lean on the communities some of us have had to build up in order to live.

    Black and Brown people – and queer, disabled Black and Brown people in particular – live with the knowledge that the systems we live under want us dead. We know what it means to only be able to rely on people like us in order to be seen. And, we also know the strength, and the necessity, of that kind of community.

    We shouldn’t be rallying around one person. Instead, we must rally around communities of people. After all, that’s what Corbyn himself has spent his political career doing.

    Featured image via YouTube screenshot/PoliticsJOE

    By Maryam Jameela

    This post was originally published on Canary.

  • RMT and disabled activists hit back at leaked Tory rail plans to close ticket offices

    Leaked government plans have revealed that it’s allegedly planning to allow train operating companies to perform mass ticket office closures. Bosses have reportedly been keeping this secret, but the government has been speaking about it for months. The impact of any closures though, not least for disabled people, could be huge. So, the National Union of Rail, Transport and Maritime Workers (RMT) and activists have hit back.

    Ticket office closures: on the cards for months

    The government has had plans to close ticket offices for a while. As Disability News Service (DNS) reported in September 2022:

    The Sunday Telegraph has reported that 25 of 30 East Midlands Railway ticket offices will be closed under a new contract, with this understood to be “broadly in line” with the government’s plans for the rest of the rail network.

    Proponents of closures argue that most people don’t use them – buying tickets online instead. They also claim that closing these offices will free up staff elsewhere. However, during a Transport Select Committee hearing on ticket office closures in January, Labour MP Ruth Cadbury pointed out that:

    The 12% of passengers who are currently using ticket offices are more likely to be occasional travellers and tourists, more likely to have disabilities, more likely to be cash buyers, more likely to have children in tow. That’s why they need that human contact.

    She also questioned whether train operators would actually redeploy ticket staff like-for-like across stations, instead of just reducing the workforce.

    Now, it seems the government’s and train operators’ plans to close most ticket offices are happening.

    Leaked plans

    The Association of British Commuters (ABC) tweeted that:

    It continued, saying that:

    this is a new stage – a direct DfT [Department for Transport] mandate given to operators a month ago.

    Closures would begin with 21 day consultations under “Schedule 17” of ticket retail regulations…

    But these are no ordinary consultations – when completed they will sweep away the regs, leaving **no visibility of staffing numbers whatsoever**

    “Schedule 17” applies only to ticket retail – not accessibility.

    In other words, train operators can close ticket offices and not have to consider disabled people’s accessibility in the process. The Guardian reported that around 1,000 ticket offices could be closed.

    People on Twitter pointed out lots of problems with the government’s alleged plan. One user poo-pooed the idea that people didn’t use ticket offices:

    Another person reminded us that UK rail travel is basically money for old rope – even more so if the government shuts ticket offices:

    One user made an important point:

    RMT general secretary Mick Lynch said in a statement:

    There are rumours circulating online that the DfT plans to announce mass ticket office closures next week.

    The train operating companies and the government must understand that we will vigorously oppose any moves to close ticket offices.

    We will not meekly sit by and allow thousands of jobs to be sacrificed or see disabled and vulnerable passengers left unable to use the railways as a result.

    RMT will bring into effect the full industrial force of the union to stop any plans to close ticket offices, including on our upcoming strike days of July 20, 22 and 29 in the national rail dispute.

    So far, the DfT has remained tight-lipped.

    Disabled people: yet more government-mandated marginalisation

    However, perhaps the biggest issue with ticket office closures is the effect it would have on disabled people. This is something many Twitter users highlighted:

    The Canary has documented for years just how badly train operators treat chronically ill and disabled people. Now, it appears this next move is another twist of the knife.

    Paula Peters is a disability rights activist with Disabled People Against Cuts (DPAC). She told the Canary:

    The mass planned closure of ticket offices across the rail network is an outrage and an absolute travesty.

    Taking away ticket offices is another barrier to exclude and marginalise disabled people from travelling, ticket machines are often broken and inaccessible to use, visually impaired people can’t use ticket machines and many with a learning impairment can’t either.

    Going over to an app to book a rail ticket is complete foolhardiness from the government; older people, disabled people, many struggle with online technology and it often crashes or totally difficult to use. It’s all about profits for the greedy CEOs and shareholders.

    Peters said that disabled people want:

    • Ticket offices kept open.
    • Guards on trains.
    • Fully staffed stations.
    • Critical safety-trained staff to assist and support them.

    Ticket offices: “The fight goes on”

    Peters summed up by saying:

    Overall, we simply demand the right to ride.

    We will continue to take the fight to the government and the train operating companies to stop the closure of ticket offices and de-staffing rail stations. This is about our safety and access.

    We will take them on in the courts, with the continuation of street protests. The fight goes on.

    So, it seems that despite the alleged plans, the government won’t have an easy ride pushing them through. The ABC has already floated potential court action, the RMT will incorporate this into its strikes, and disabled people will push back via protests. Train operators won’t be closing ticket offices without a fight from those at the sharp end of these brutal cuts.

    Featured image via El Pollock – Wikimedia, resized to 770×403 pixels under licence CC BY-SA 2.0

    By Steve Topple

    This post was originally published on Canary.

  • Man Utd’s poor performance on disability access hides a deeper issue

    Man Utd has come out mid-table in research around Premier League access for disabled people. However, this masks bigger problems in terms of football’s overall accessibility – not least in terms of chronic illness, but also poverty for disabled people.

    Man Utd: mid-table for disabled people

    Oak Tree Mobility is a disability adaptation and aid company. But it also does research into disability access. It’s looked at just how accessible all 20 Premier League clubs are for disabled people – and the results are a mixed bag. The company based its research on multiple criteria. These included:

    • The number of wheelchair-accessible seats relative to capacity. Accessible Stadia Guide’s recommends for a 40,000 capacity stadium, there should be 210 wheelchair accessible spaces, with an additional two per 1,000 seats.
    • The number of accessible toilets.
    • Provision of audio description services.
    • On-site blue badge parking.
    • Sensory rooms for fans with specific needs.

    Oak Tree Mobility also factored in fan-submitted ratings of “away days” to capture the overall experience for travelling fans. It then gave clubs a score out of 110. The results showed Liverpool came out top – while all three teams newly promoted to the Premier League – Burnley, Sheffield United, and Luton Town – were in the bottom six:

    An infographic about Premier League accessibility Man Utd

    Perhaps surprisingly, Man Utd came in at 11th. Oak Tree Mobility gave it 68 points in total; 27 points behind the club’s Man City rivals. However, it’s not the first time Man Utd has shown to be not fully accessible for disabled people. As the Telegraph reported, disabled fans were furious after an ‘oversight’ at the start of the 2022/23 season meant accessible seats weren’t available.

    Plus, Man Utd being accessible is a relatively new thing. A Telegraph investigation in 2017 found the club was not complying with the Accessible Stadia Guide’s recommended quota. In the end, Man Utd had to invest to make changes.

    Accessibility for chronic illness: bottom of the league?

    All this comes amid the Premier League failing to meet a commitment it made over accessibility. As Oak Tree Mobility wrote:

    In 2015 a pledge was made by the Premier League to Accessible Stadia Guide stating that all participating clubs would achieve compliance by August 2017. Despite these promises, suitable wheelchair-user spaces have actually fallen in the last five years.

    As a result of failure to meet this pledge, disabled supporters have voiced their hesitance to attend future matches. In addition to limited seating and other accommodations, disabled fans have even experienced abuse from other fans.

    However, there are two other issues with accessibility to the Premier League. What much of the Accessible Stadia Guide fails to consider are chronically ill disabled people. For example, many people living with genetic, or chronic, diseases or illnesses have “energy-limiting conditions” (ELCs); that is, as the Business Disability forum wrote:

    reduced physical and cognitive energy levels

    For example:

    some people will feel physically exhausted after having a shower. This may mean they need rests between washing and dressing.

    However, in terms of Premier League clubs like Man Utd there is little done to make attending matches easier for these people – like queue jumping. This is not confined to the Premier League, though – as it’s an issue across society. One in three chronically ill and/or disabled people live with an ELC. Yet laws, workplaces, public services, and policies do not account for them.

    Then you then have specific chronic illnesses. Postural orthostatic tachycardia syndrome (PoTS) is a condition where the heart beats too fast when a person goes from laying or sitting to being upright. This can cause people to feel sick, faint, and have severe headaches. One of the ways a person can alleviate the symptoms is to elevate their legs.

    However, Premier League clubs like Man Utd make no provision for this. Of course, nor does wider society – as putting your feet up on a chair in a public space is still viewed as a social faux pax.

    The real accessibility issue: poverty and classism

    So, disability access in the Premier League is still lacking. Clubs’ provisions for chronically ill people are often non-existent. However, the biggest barrier for chronically ill and disabled people to watching top-flight football is still the cost.

    A Man Utd season ticket for 2023/24 comes in at over £1,000. For many people, this cost is extortionate and reeks of classism. However, for many chronically ill and disabled people too it is well beyond their reach. When working-age disabled people are twice as likely to live in poverty, and more than half of foodbank users are disabled – then getting to see a Premier League football match is a no-no.

    The poverty rate for disabled people is well above the national average. Half of all people in poverty are either disabled or carers to them. So, while Premier League clubs like Man Utd are failing to meet basic stadium accessibility, it’s the thin end of the wedge when countless chronically ill and disabled people couldn’t afford to get through the turnstiles in the first place.

    Additional reporting via Blue Array SEO

    Featured image via Sky Sports Premier League – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • The DWP’s invasion of the NHS continues: GPs can now refer disabled people for voluntary work placements

    The Department for Work and Pensions (DWP) has announced further plans for co-working with the NHS. The proposals will allow GPs to refer chronically ill and disabled people to “employment support“. Currently, the scheme will be voluntary. However, the programme represents yet another move by the DWP to get its claws into NHS settings. Moreover, it further pushes the false narrative that ‘work is good for your health’.

    DWP: getting more disabled people back to work

    The DWP said on its website that:

    More than 25,000 people with health conditions will be helped to start and stay in work thanks to over £58m in new government funding.

    As the Daily Record reported:

    Those on the scheme, called the ‘Individual Placement and Support in Primary Care (IPSPC)’ programme, will be given employment support alongside their normal health treatment. The support will cover 12 areas across 41 local authorities in England, and participants will be referred to the service by healthcare professionals such as GPs.

    Outsourcing more NHS contracts

    Details are still sketchy, as the DWP only started the scheme in April. It says the Individual Placement and Support in Primary Care (IPSPC) programme will be “providing on-the-job “place and train” employment support and advice”. The scheme is voluntary, and it’s open to people NHS professionals identify as eligible. Participants don’t have to be claiming benefits. However, they do have to meet certain criteria. The DWP says people can either be:

    Out-of-Work Participants who require assistance and support to move into sustainable employment, [or] In-Work Participants who are employed and either off sick or struggling in the workplace due to their disability.

    Of course, the scheme isn’t actually being run by the NHS. Local authorities are applying for funding from the DWP. Then, they can use the cash to outsource the running of IPSPC to private companies or charities. For example, Greater Manchester Combined Authority has already done this. These new organisations will then integrate into the NHS.

    Private providers once again getting public sector contracts in the NHS is privatisation, in everything but name. But aside from that, the DWP’s IPSPC scheme is littered with problems.

    IPS: hardly a resounding success

    First, and the DWP has based IPSPC on a US model of healthcare-based employment support – the Individual Placement and Support (IPS) programme. This was designed for people living with serious mental health issues – not chronic illness or physical impairments. The DWP and NHS already implemented IPS for people living with mental health issues in the UK.

    The creators of IPS claim it’s evidence-based. However, one study found IPS only got people into work for a limited time. After six years, there was not a significant gap in employment outcomes between IPS and people who had standard psychiatric treatment. Moreover, the success of IPS in the UK is questionable, too. Between January 2016 and March 2019:

    • 31% of IPS participants started a job.
    • 22% kept that job for at least six weeks.
    • 12% kept that job for at least six months.

    Hardly a resounding success. It’s debatable whether outcomes for chronically ill and disabled people would be any better.

    Then, there’s the issue of the DWP once again invading the sanctity of the healthcare environment. The IPSPC scheme ‘integrating’ “employment support and advice… with [a patient’s] normal health treatment” is wholly inappropriate. As professor Helen Stokes-Lampard previously told the Independent regarding the DWP wanting to access patient’s medical records:

    We are doctors, whose first interest is the care of our patient: we are not border guards, and we are not benefits assessors.

    Work is good for you, apparently

    However, perhaps the most damaging part of the DWP’s IPSPC plans is its central claim that work is somehow good for you.

    The DWP says that the basis of the IPSPC scheme is:

    Recognising employment as an important driver of health and wellbeing

    Likewise, the founders of IPS claim:

    Work is the best treatment we have for serious mental illness (i.e., people with schizophrenia spectrum disorder, bipolar, or depression)… Being productive is a basic human need. Working can both be a way out of poverty and prevent entry into the disability system. Competitive employment has a positive impact on self-esteem, life satisfaction, and reducing symptoms

    Most of this is demonstrable nonsense. For example, saying work is a ‘way out of poverty’ is untrue in both the US and UK – as in-work poverty rates show. But it’s the IPS’ founders’ key claim that work acts as a health treatment that’s most damaging – and it’s a claim that the DWP also repeatedly makes.

    Fulfilling the capitalist dream

    The idea that working is good for your health is simply not true – especially in the UK. As researcher Kitty S Jones wrote, the DWP itself helped create this fallacy:

    There is plenty of evidence that indicates government policy is not founded on empirical evidence, but rather, it is ideologically framed, and often founded on deceitful contrivance. A… [DWP] research document published back in 2011 – Routes onto Employment and Support Allowance – said that if people believed that work was good for them, they were less likely to claim or stay on disability benefits.

    So a political decision was made that people should be “encouraged” to believe that work was “good” for their health. There is no empirical basis for the belief, and the purpose of encouraging it is simply to cut the numbers of disabled people claiming… [benefits] by “helping” them into work.

    Clinical psychologist Dr Jay Watts previously told the Canary that by saying work is good for your health the DWP is reinforcing:

    the message work is the central goal of a meaningful life. This increases the shame, guilt and anxiety disabled people already feel. Even more so under a welfare system that equates worklessness with worthlessness. It is exacerbating mental health problems. The goal of mental health services has always been to improve quality of life and reduce distressing symptoms…

    This ‘back to work’ obsession places huge demand on patients to fulfil the neoliberal dream. One whereby health is linked to how much one can contribute to the public purse. But this is foreclosing the reality of long-term disability. We do not, would not, hear that chemotherapy is worth funding because it helps the public purse through getting people back to work.

    The DWP and NHS: pushing a lie

    While the DWP’s IPSPC said to be voluntary, this ignores the reality of chronically ill and disabled people’s lived experience. If a medical professional tells you that something may help you feel better, you’re likely to believe them and accept it. We’ve seen this before with the disease myalgic encephalomyelitis (ME) and exercise therapy. This treatment actually made patients worse when they carried it out – yet because of dishonest research, doctors were pushing it onto patients anyway.

    However, the bigger picture here is that once again, the DWP is manipulating both patients and some medical professionals into thinking that engaging in what will likely be low-paid work is somehow good for chronically ill and disabled people. As is often the case, it’s doing this to cut costs.

    In reality, it’s a lie that work is a blanket solution to chronically ill and disabled people’s problems. What they need is proper medical care, a social security system that doesn’t penalise and stigmatise them, and a society that is fully accessible. The DWP is none of those things – nor is this latest scheme.

    Feature image via the DWP – YouTube and the NHS – Wikimedia 

    By Steve Topple

    This post was originally published on Canary.

  • Carer spotlight: Erin’s story of being a young carer

    10.8% of all Australians identified as carers in the 2018 Australian Census. That is approximately 2.65 million people! And yet, Erin–who was a Disability Support Worker for five years and is a carer for her brother–says that “we don’t really talk about it.”

    Keep quiet and carry on

    Erin caring for her brother wasn’t vocalised as an expectation; there was “no conversation” about it at all. 

    As the youngest daughter, it was her responsibility to “make his food and help him with his hygiene… administer medication.” Her second brother, James, would “entertain him by playing video games with him and talking to him.” 

    Erin, 19, also emphasises that her mum, for many years, was the “main carer” for her brother. While Erin recognises that expectations placed upon her were gendered “to a degree”, she points out that her mum was a carer and mother of three with a full time job for all her childhood. 

    This–albeit unequal–distribution of labour has been crucial in making sure her brother receives appropriate support. However, Erin grew up with and then internalised an unspoken expectation that she must “always put others first”. 

    For Erin, this looked like “fitting your life around him [her brother],” taking on the majority of household tasks as she got older, and working two jobs all while going to school. 

    I reached out to Emma Madsen, who runs The Carers Club. She says, “most carers are in the workforce in some capacity.” Emma also points out: “Through my work with carers […] it might be a more 50/50 split between men and women carers. Male carers often don’t identify as caregivers, and I suspect internalise a lot of their struggles, resulting in them not accessing services and support, which in turn doesn’t allow us to capture them in the data.” 

    In Erin and James’ case–although the kinds of care they provided were gendered–they shared care responsibilities while James lived at home. 

    Family caregivers “often” provide care “for years without a reasonable break, recognition, [or] reasonable financial support”, and Erin is no exception.

    Erin: “He [her brother] has to be our main priority.”

    These silent expectations were “the norm.” They’ve taken a toll on Erin’s mental health and she has learnt to always sacrifice her own wellbeing in favour of her “friends and family.”

    What we think we owe to each other 

    Erin tries to tell herself, “Hey, stop living for other people!” but finds herself doing just that. Once you find yourself in the rhythm of “putting others first”, it becomes increasingly difficult to stop.

    “If something is totally not my issue–maybe my friends are going through something–I still feel the need to step in and be their support person. Or if my mum is having a hard time, but I’m also having a hard time, I will still look after her rather than myself. I’ll still look after my brother.”

    Erin would feel “guilty” if she acted any other way. 

    Erin also reflects on how she and her brother James relate to one another: “We were kind of like business partners.” 

    “When I see James and it’s just the two of us we’re like, ‘Oh, what do we talk about?’”

    Their shared responsibilities of care took priority over a “sibling bond,” and they are now relearning how to be brother and sister. Erin sees “glimpses of a bond” with both her brothers, but she doesn’t think it will “ever be normal.”

    Searching for support as a young person

    According to the 2021 Carers Wellbeing Survey, young carers “are at greater risk of high psychological distress.” This makes it crucial that young carers like Erin have access to robust support systems.

    Erin - young carer. Picture: Jesse Blakers

    Erin told Jesse she “felt like an adult when I was 12.” Picture: Jesse Blakers

    From ages 9 to 16 Erin belonged to a Young Carers program run through the St Vincent de Paul Society. They organised monthly activities like going to the movies, and camps twice a year. “They were probably the best thing ever, they were amazing.” 

    “You could relate to everyone…because everyone going to these programs were young carers as well. You could always talk to them.”

    However, finding support as a young carer has been a mixed bag for Erin. When she attempted to access other support services, she says, “They wouldn’t take me seriously because I was young… they just wouldn’t listen.” She would reach out for help, “and then nothing would happen.” 

    Erin asks: “So where did that information go?”

    When Erin came to school exhausted or overwhelmed, people around her didn’t seem to notice. “No one really offered… to be like ‘Hey, do you wanna talk about anything?’”

    Sometimes Erin felt like she wasn’t allowed to be a kid. “I felt so grown up for a long time. People always used to say, ‘Oh, you’re so mature! That’s amazing!’ At the time I thought that was great… but I shouldn’t have had to be.”

    Because this was “the norm” for Erin, it wasn’t expected that she should reach out for support. “I felt like an adult when I was 12.”

    Particularly in primary school and early high school, “there was never any talk of a less-than-perfect home life” among her peers. Erin was “weird” if she tried to reach out. 

    This “perceived stigma associated with caring” makes it harder for young carers to share what they are going through. 

    These days, Erin is learning how to look after herself: “My brain is going a thousand miles a minute.” It’s the small things that help her right now: “my friends, going on walks, taking it one day at a time.”

    Erin hopes for “more awareness” that “some young people look after family members,” and that young carers are able to develop strong “support networks.”

    • Are you a Young Carer, or do you know a Young Carer looking for support? Little Dreamers provide online and in person programs for young carers aged 4 to 25. The Carer Gateway and Carers ACT are also great places to start



    Picture at top: Young carer Erin. She’s chosen not to have her face in the photos. Pic: Jesse Blakers

    The post Carer spotlight: Erin’s story of being a young carer appeared first on BroadAgenda.

    This post was originally published on BroadAgenda.

  • The DWP’s latest Universal Credit plans could see it stop 632,000 peoples’ benefits

    The Department for Work and Pensions (DWP) is once again shaking up Universal Credit. It’s to do with the Work Capability Assessment (WCA) for people who are chronically ill, sick, and/or disabled. However, in the process it could deny benefits to over 600,000 people – many of whom are too sick to work.

    Universal Credit: a shake-up on the cards

    The DWP is planning to change the way it assesses chronically ill, sick, and disabled people. This has been in the pipeline since 2019. As the Canary reported at the time, the then-work and pensions secretary Amber Rudd wanted a single test for claimant eligibility for Personal Independence Payment (PIP), Employment and Support Allowance (ESA), and Universal Credit. This would replace the current WCA. The idea then was that the DWP would run this in-house. However, since then, the department has tinkered with the policy.

    As John Pring at Disability News Service (DNS) reported, now the DWP will base chronically ill, sick, and disabled peoples’ entitlement to both health-related elements of Universal Credit and ESA on their PIP or DLA entitlement. That is, people will need to get PIP or DLA to get health-related out-of-work benefits. These include Universal Credit’s Limited Capability For Work Or Work-Related Activity (LCWRA).

    DNS noted that the DWP would manage this in-house, because the plans:

    would see DWP work coaches deciding if a disabled person could carry out work-related activity.

    However, the policy is littered with problems.

    Chronic illness: not fitting DWP criteria

    As the Canary previously wrote:

    The WCA and PIP criteria are completely different, as are the benefits. The DWP may be asking people for the same information about their illnesses or impairments. But the context is completely different. The WCA looks at what sick and disabled people can do regarding work. The PIP health assessment looks at what support people need. To combine both these assessments is simplifying people’s health. But more often than not, people’s health is not simple at all.

    However, the biggest problem now is that there are loads of people who currently get health-related out-of-work benefits but not PIP or DLA. Under the new regime, they may not be entitled to anything.

    The DWP denied to DNS that this was the case. However, DNS spoke to Ken Butler from Disability Rights UK. He said:

    The health element proposals will mean that around 632,000 disabled people who receive the employment and support allowance or universal credit support component will lose this as they do not receive PIP or DLA.

    What’s not clear is just who these people are. Anecdotally, people living with chronic illnesses, such as myalgic encephalomyelitis (ME), long Covid, and Ehlers-Danlos syndrome struggle to get PIP. This is because the DWP designed the assessment around disabled people whose impairments are related to mobility, physical dexterity, and cognition. In short, many chronically ill people do not fit into PIP’s rigid criteria box. People living with enduring psychological distress, as well as other mental health conditions, also struggle with PIP.

    However, the WCA criteria fits both these groups of claimants’ support needs more. Therefore, if the DWP makes the entitlement for health-related out-of-work benefits solely based on PIP, it’s likely many chronically ill people, and those living with mental health issues, will be the ones to which it denies benefits like Universal Credit.

    Intentional denial

    Of course, the DWP changing the system so as to potentially remove chronically ill people’s support is not some accident. As the Canary previously reported, there are now over 360,000 more people who are chronically ill and not working than before the coronavirus (Covid-19) pandemic. The government classes these people as “economically inactive”. It’s currently on a drive to get some of the nine million people who are economically inactive into work.

    So, by removing the WCA and just relying on PIP entitlement, the DWP will be able to strip some of these economically inactive people of their entitlements. This will leave many with little choice but to try and work.

    However, as the Canary previously wrote there are already not enough jobs to go around anyway. Plus, stopping people’s benefits does not get them back into work. Moreover, the DWP denying chronically ill, sick, and disabled people support led to countless deaths in the 2010s. Any new push by the department to force people into work will end in disaster.

    Featured image via VideoBlogg Productions/the Canary and Wikimedia

    By Steve Topple

    This post was originally published on Canary.

  • How much is Universal Credit going up by in April 2024? And is it actually a cut?

    Universal Credit is now the main social security that people on benefits claim from the Department for Work and Pensions (DWP). At the minute, a lot of people want to know how much is Universal Credit going up by.

    However, more importantly what is it? How do you claim it? How much do you get? Where did Universal Credit come from? And what are the problems with it you’re not hearing about? Here, the Canary explains all.

    What is Universal Credit?

    It’s the main benefit that people can claim from the Department for Work and Pensions (DWP) now. Universal Credit has been replacing six old-style benefits like Employment and Support Allowance (ESA) and Jobseeker’s Allowance (JSA) since 2013. The DWP has gradually rolled it out across the UK. More and more people have been claiming it as time has gone on.

    The DWP designed Universal Credit so that all types of claimants are entitled to it. Generally, it’s for people over the age of 18. This includes jobseekers, chronically ill and disabled people, and people who have caring responsibilities. They would have previously claimed ESA or JSA.  Also, people who don’t earn much money because of their job can claim it as well. They would have previously claimed Working Tax Credits.

    How much is Universal Credit?

    How much Universal Credit will I get?

    That really depends on your circumstances. The DWP has made it quite complicated in terms of different payment rates. It breaks the benefit down into different parts (elements). However, the basic amounts (“standard allowance“) Universal Credit gives you are as follows.

    If you’re aged under 25, from 1 April 2023 you’ll get:

    • £292.11 a month if you’re single.
    • £458.51 a month for couples (“joint claimants”).

    If you’re aged over 25, you’ll get:

    • £368.74 a month if you’re single.
    • £578.82 a month for couples.

    Then, you may be entitled to other parts of Universal Credit.

    Kids, health and disability, and housing

    If you have children, the Department for Work and Pensions (DWP) might give you more money to help you with their costs. However, it will only pay for up to two children. This is called the two-child limit. Under Universal Credit, you might get:

    • £315 a month for your first or only child. However, they need to have been born before 6 April 2017.
    • £269.58 a month for a second child, or for one child born after 6 April 2017.

    If you have a child/children, the DWP might say you should be working when you’re not, or that you’re not working enough. It will then force you to do certain things to get Universal Credit. What these are depends on the age of your child:

    Age of youngest child Your responsibilities Under 1 You do not need to look for work in order to receive Universal Credit. Age 1 If you are not already working, you do not need to look for work in order to receive Universal Credit. You will be asked to attend work-focused interviews with your work coach to discuss plans for a future move into work and will need to report any changes of circumstances. Age 2 You will be expected to take active steps to prepare for work. This will involve having regular work-focused interviews with your work coach, and agreeing a programme of activities tailored to your individual circumstances which might include some training and work preparation activities (for example, writing your CV). Age 3 or 4 You will be expected to work a maximum of 16 hours a week, or spend 16 hours a week looking for work. This might include some training and work-focused interviews. Age between 5 and 12 You will be expected to work a maximum of 25 hours a week, or spend 25 hours a week looking for work. This might include some training and work-focused interviews. Age 13 and above You will be expected to work a maximum of 35 hours a week, or spend 35 hours a week looking for work. This might include some training and work-focused interviews. Universal Credit, DWP, Department for Work and Pensions, Benefits

    If you are a chronically ill or disabled person, you might get the Limited Capability for Work or Work-Related Activity (LCWRA) element. This means the DWP shouldn’t make you do anything regarding getting a job. It will give you:

    However, to get this, you have to pass an assessment. There’s more on that further down this page.

    If you’re an unpaid carer, the DWP may give you:

    • £185.86 a month.

    The DWP might also give you the housing element. How much it will give you depends on a lot of things. So, it’s best to read the DWP’s guide on this here.

    Man spends last day alive at a Jobcentre being told he's fit for work he dies on the way home DWP, Department for Work and Pensions, Benefits

    Working, and work-related groups

    You can work and claim Universal Credit as well.

    How much can you earn and still get Universal Credit?

    This depends on your circumstances. It also depends on whether you are part of a couple, and what the other person’s circumstances are. However, as a rough guide – if you have a child, or you have Limited Capability For Work, the Department for Work and Pensions (DWP) will give you a Work Allowance. This is an amount you can earn before the DWP starts reducing your Universal Credit payments. The DWP will give you a Work Allowance of:

    • £379 a month if it also gives you the housing element.
    • £631 a month if it doesn’t give you the housing element.

    After these amounts, the DWP starts deducting money off your Universal Credit. For every pound you earn, it takes 55p back from your benefits payment.

    If you’re self-employed, the DWP also has rules around how much it thinks you should be earning. This is called the Minimum Income Floor. The DWP expects all self-employed claimants who can work full time to be earning the same as someone who does 35 hours a week at a minimum wage job. If the DWP doesn’t expect you to work full time, then the Minimum Income Floor is based on the number of hours it does expect you to do.

    How many hours can you work on Universal Credit?

    If you’re just working, and not claiming disability or health elements, then the Department for Work and Pensions (DWP) doesn’t base your payments on how many hours you work. It bases them on how much you earn.

    Once the DWP has decided what you’re entitled to, it puts you into a group. These are based on what it expects you to do regarding work. The DWP makes this decision based on your circumstances. For example, if it says you have LCWRA then it will put you in the “no work-related requirements group”:

    Group What you'll need to do No work-related requirements group You don’t have to do anything to prepare or look for work Work-focused interview group You have to go to regular meetings with your work coach Work preparation group You have to meet your work coach regularly and also prepare for work. This includes things like writing a CV and going on training or work experience All work-related activity group You have to do all you can to find a job or earn more. This includes looking for jobs, applying for jobs and going to interviews Universal Credit, DWP, Department for Work and Pensions, Benefits

    How much is Universal Credit going up by in April 2024?

    The Department for Work and Pensions (DWP) increased Universal Credit by 10.1% from 1 April 2023. However, benefit claimants didn’t actually see an increase in April, overall. In reality, the DWP took people’s benefits back up to the rate they were at in April 2022. This is because the rising cost of everything (‘inflation’) was been more than the DWP’s 10.1% increase. This is called a ‘real-terms cut’.

    So, while the DWP may be giving claimants more money, it’s not giving them enough to make up for the fact everything is more expensive now.

    New Universal Credit rates April 2024

    From April 2024, the DWP will put Universal Credit up again. The rates will change to the following:

    Standard allowance
    Single under 25 292.11 311.68
    Single 25 or over 368.74 393.45
    Couple – joint claimants both under 25 458.51 489.23
    Couple – joint claimants, one or both 25 or over 578.82 617.60
    Child amounts
    First child (born prior to 6 April 2017) 315.00 333.33
    First child (born on or after 6 April 2017)/ second child and subsequent child (where an exception or transitional provision applies) 269.58 287.92
    Disabled child additions
    Lower rate addition 146.31 156.11
    Higher rate addition 456.89 487.58
    Limited capability for work amount 146.31 156.11
    Limited capability for work and work-related activity amount 390.06 416.19
    Carer amount 185.86 198.31
    Childcare costs amount
    Maximum for one child 950.92 1014.63
    Maximum for two or more children 1630.15 1739.37
    Non-dependants’ housing cost contributions 85.73 91.47
    Work allowances
    Higher work allowance (no housing amount) one or more dependent children or limited capability for work 631.00 673.00
    Lower work allowance – one or more dependent children or limited capability for work 379.00 404.00

    However, most people will still be worse off because of inflation. For example, think tank the New Economics Foundation says that:

    • An out-of-work single person over 25 on Universal Credit would be £670 a year worse off than in April 2023.
    • A a lone parent with one child would be £350 worse off.
    • A couple over 25 with two children would only be £35 a year better off.

    How to apply for Universal Credit

    You can make an application here:

    Apply for Universal Credit

    If you are a disabled or chronically ill person, the Department for Work and Pensions (DWP) will make you wait three months before it will pay you extra money for your condition. It may make you do a Work Capability Assessment (WCA). This is where the DWP will assess whether you’re entitled to extra financial support.

    You need to prepare for the WCA. Make sure you have as much evidence from doctors about your condition as you can get. Be prepared to explain to, and show, the DWP why you cannot do much work, or work at all. And if the department says you’re not entitled to extra money, always challenge this with a Mandatory Reconsideration – if you have the capacity to.

    More advice on the WCA is available here.

    Universal Credit login

    If you already claim Universal Credit, or have done recently, you can access your account here:

    Universal Credit Login

    Does PIP affect Universal Credit?

    No, Personal Independence Payment (PIP) does not affect Universal Credit at all. Its predecessor – Disability Living Allowance (DLA) – doesn’t, either.

    PIP is not a means-tested benefit. That is, it doesn’t matter if you’re rich, poor, or just ‘doing OK’. The DWP will give you PIP if it says you’re chronically ill or disabled enough to get it. So, because PIP is not means tested, it has nothing to do with Universal Credit.

    Breaking the government just lost a major court case giving 164000 disabled people the best Christmas present ever Universal Credit

    Where did Universal Credit come from?

    It was the idea of the Conservative Party – specifically Iain Duncan Smith MP and his think tank the Centre for Social Justice.

    When the Tories were in opposition in the noughties, then-leader David Cameron asked Duncan Smith to come up with an idea to change the benefits system. He wanted to make the Department for Work and Pensions (DWP) cost less for the government, and also to stop poor people claiming benefits.

    The Tories believe that poverty is partly the fault of poor people, due to things like education and addiction. So, Duncan Smith designed Universal Credit with the belief that people could get a job to get out of poverty. However, he also thought that Universal Credit should use punishments like sanctions and cutting people’s money to try to force them to stop claiming benefits and get into work.

    Is poverty people’s fault?

    So, the Tories think that if you’re poor, it’s probably your own fault – and that work is the best thing you can do to not be poor.

    However, a lot of evidence shows this is not true. For example, bosses have been paying people really low wages for years. People are not earning as much (in real terms) now as they were in 2008. This is also the Conservative Party’s fault, as it’s been in government for most of that time.

    For example, it has never set the rate of the national minimum wage at the level of the so-called “Real Living Wage“. So, bosses have always been able to get away with paying people really low wages.

    DWP court case could see millions get £1500 Universal Credit, DWP, Department for Work and Pensions, Benefits

    What are the problems with it?

    Universal Credit has been controversial since it was launched. Here are some of its biggest scandals:

    The Un is preparing to investigate the UK government again Universal Credit, Department for Work and Pensions, Benefits

    Canary thoughts on Universal Credit

    Victorian thinking

    Steve Topple previously wrote for the Canary:

    What drove all this thinking seems to me to be Victorian-era, Christian fundamentalist values. Essentially, the notion of the ‘deserving’ and ‘undeserving’ poor.

    All of the contemporaneous… work pushes the idea that it’s poor people’s behaviours and attitudes that must change, not capitalism. It, of course, ignores the fact that its five “pathways to poverty” are all symptoms of capitalism itself; not of people’s bad behaviour.

    But… [its architects] couldn’t acknowledge this, as it would naturally render them, and the capitalist-driven Conservative Party, null and void.

    So essentially, their thinking was if you’re poor, you made yourself that way; shown in the “pathways to poverty”. To stop poor people being stupid and making themselves destitute, the government needed to shake up the benefits system; to nudge everyone possible into work, and those in work into more work; making welfare reliance impossible. And anyone left? It’s their own, stupid fault.

    So to do this, the… [Tories] created Universal Credit.

    But it would also put all those unwilling to help themselves out of poverty and welfare into one place. Sick, disabled, unemployed and low earning people would no longer be different, distinct benefit groups. They would become one, homogeneous ‘underclass’ of people. And, as the… [Tories’] early thinking shows, the state would give minimal support to these people. Instead, charities and communities should carry the burden of this workless/underemployed group.

    A dystopian nightmare

    Topple continued:

    Universal Credit is the perfect vehicle for the 21st-century ‘Victorian mindset’. It sanctions low paid workers who aren’t doing enough to get more work; penalises lone parents; cuts free school meals; reduces support for disabled people with severe impairments. And, by design, it encourages people’s reliance on charity – note the rise of food banks.

    Universal Credit’s history shows why… it cannot be ‘fixed’.

    Its architects designed it to marginalise whole sections of society; to create a dystopian world where an underclass of people exists on its fringes.

    Couple this with the government cutting public services left, right and centre; homelessness rocketing; social housing decimated –  and we are seeing a nightmarish vision, once reserved for science fiction, becoming a reality. Universal Credit needs to be stopped and scrapped.

    Sadiq Khan just attacked the DWP. He should have saved his breath.

    What can you do to change Universal Credit for the better?

    You can get involved with grassroots campaign groups to protest and take action over Universal Credit. These include:

    Got a story about your experience of Universal Credit? Email us via editors(at)thecanary.co

    Featured image via the Canary and Wikimedia

    By Steve Topple

    This post was originally published on Canary.

  • A debate in parliament over the government’s treatment of disabled people wants your input

    Parliament is set to debate whether the government has adequately supported chronically ill and disabled people during the cost of living crisis. It’s come about thanks to two petitions, which secured the session in the House of Commons. The campaigners behind the petitions believe the government still hasn’t done enough to support people. So, they’re hoping the debate in parliament will prompt further action. However, it needs people affected by the government’s lack of support to submit evidence for it.

    Cost of living support: excluding over one million people

    Rachel Curtis is a campaigner for disability and carer rights. In 2022, she joined forces with unpaid carer organisation We Care Campaign to launch a parliamentary petition. It was around the government’s first response to the cost of living crisis. At the time, the Department for Work and Pensions (DWP) was giving additional payments to people on means-tested benefits like Universal Credit. However, as the Canary reported in July 2022, these payments weren’t reaching everyone. The DWP was excluding around:

    Specifically, the department excluded PIP/DLA claimants who weren’t also on means-tested benefits – instead giving them just £150. Meanwhile, it gave people on Carer’s Allowance nothing. As Katy Styles from the We Care Campaign told the Canary:

    Government support simply didn’t go far enough. For people on non means-tested benefits they received an extra £150. For those on means tested benefits they received an extra £650. For carers on Carer’s Allowance there was no additional support. It was a drop in the ocean in terms of paying the increased energy costs for disabled families. For those families facing higher energy bills it meant cutting back on basic essentials and making impossible choices to keep vital equipment running as their energy bills rose.

    DWP: ‘grossly unjust’

    So, Curtis and the We Care Campaign launched a petition. It called on the government to provide an “energy grant” for chronically ill and disabled people, and their carers. The petition stated:

    Many people need to use a ventilator 24/7. People use electric pumps to feed through […] tubes. People need to charge their mobility equipment, such as electric wheelchairs, stair lifts, bath seats.

    The Government needs to provide a grant, so that people with a disability or serious medical condition can afford to run the equipment, or heating, they need to stay alive. It is not right that people living with conditions that require energy, should be punished for it, and sometimes face unmanageable debts with energy companies. What a horrendous situation to face. If some people don’t run their ventilator, CPAP machine or feeding pump they will die.

    Curtis told the Canary that she launched the petition because:

    I run a community association, Northern Lights, that supports families who have a child with additional needs, or a disability, in Northumberland.

    As the energy prices rose I began to see everyone struggling to afford to pay their bills. Families with a disabled member use more electricity, whether that be for electric wheelchairs, hoists, lifts, CPAP machines or having to run heating constantly for chronic lung conditions. I feel it is grossly unjust that families like mine are being taken advantage of by energy companies. We have to use more energy. We have no choice.

    Usually, petitions need to reach 100,000 signatures for the committee in charge of them to consider a parliamentary debate. However, on this occasion it made an exception – seemingly because there was also another petition on top of Curtis’s which made a similar point.

    Chronically ill and disabled people, and carers: get involved

    So, there will now be a debate in parliament at 4:30pm on Monday 22 May. For this, the Petitions Committee wants to hear from people affected by government policy. It stated that it:

    would like to hear from you about your experiences of and views on the cost of living and financial support for disabled people.

    Share your views with by completing our survey, by 31 March:

    Survey without British Sign Language
    Survey with British Sign Language translation
    Survey in Easy Read format

    A summary of responses will be published on the Parliament website. It will also be shared with MPs and may be referred to in the debate or within other parliamentary documents. Please don’t share anything that may identify you.

    Styles told the Canary that the We Care Campaign has a fairly straightforward action it would like the government to take:

    A social energy tariff for families like ours makes sense. We want discounted energy bills for disabled people and their carers who have higher energy costs. It’s through debates like this upcoming one, that disabled families and carers’ voices are heard and will help to explain why a social tariff is so needed.

    ‘It is criminal’

    Meanwhile, Curtis told the Canary:

    I am hoping this debate will highlight the dire situation so many families are in right now. Our government should be fighting to protect disabled citizens from being forced to hand over all our income to energy companies for electricity and gas we need to stay well, and in some cases, alive. It is criminal. It’s vitally important that disabled people are able to run the equipment we need. Energy companies must be forced to stop profiteering from us and set affordable, low tariffs for families like mine.

    Parliamentary debates from petitions have no power to make the government act. However, they can put pressure on the government to act. They also have the power to raise awareness of an issue. Moreover, they give people with lived experience of issues a chance to have their views put on record. So, if you can share your views, do – and they might be included in the debate on 22 May.

    Featured image via Maurice – Flickr, resized to 770×403 under licence CC BY 2.0 

    By Steve Topple

    This post was originally published on Canary.

  • ‘The Whole System Is Stacked Against a Person With a Disability’ – CounterSpin interview with Kim Knackstedt on disability policy

     

    Janine Jackson interviewed the Disability Economic Justice Collaborative’s Kim Knackstedt about disability policy for the March 10, 2023, episode of CounterSpin. This is a lightly edited transcript.

          CounterSpin230310Knackstedt.mp3

     

    Janine Jackson: Human rights advocates everywhere marked the death, March 5, of groundbreaking disability justice activist, spokesperson and policymaker Judy Heumann.

    Obituaries rightfully noted meaningful advances Heumann played a role in, like the Americans With Disabilities Act.

    WaPo: Judy Heumann, unyielding advocate for disability rights, dies at 75

    Washington Post (3/6/23)

    It rang a bit odd though to read in the Washington Post that Heumann, born in 1947, “came of age at a time when disabled people had restricted access to libraries, schools and public transportation, with limited opportunities for education or employment.”

    Perhaps the outpouring of attention for Heumann’s life and work could encourage journalists to explore present-day restrictions, limitations, crises, confronted by people with disabilities—one in four adults in the country—along with what responses, including policy responses, are called for.

    Kim Knackstedt is senior fellow at the Century Foundation and director of the Disability Economic Justice Collaborative. She joins us now by phone from Washington, DC. Welcome to CounterSpin, Kim Knackstedt.

    Kim Knackstedt: Hi. I’m glad to be with everyone today.

    JJ: Well, I’m not making fun of that piece. But I was just struck by that “cast your mind back, if you can, to a time when disabled people didn’t enjoy all the freedoms…”

    I guess my thought, just to start us off, is that. But also, Judy Heumann was emphatically not of the “wait patiently and progress will inevitably come” school of thinking, was she?

    KK: Oh, no, no, not at all. Judy was definitely one to fight for what she wanted, and she was fiery. One of the words she loved to use was “feisty.” And she really went after what she knew was wrong.

    And during her services yesterday—I was very lucky to attend and be in community with so many people from around the country, and by video, around the world—we got to hear so many stories about her, and every story had a note about her fighting for the rights of disabled people, and against the injustices that so many of us face.

    Time: Long COVID Experts and Advocates Say the Government Is Ignoring 'the Greatest Mass-Disabling Event in Human History'

    Time (9/19/22)

    JJ: And still face. And this is of course what I’m complaining about here, the treatment of disabled people as an afterthought in policy, in media, which I know is what you engage.

    And it’s weird, given not only that so many people in the country are living with disabilities of varying kinds, but also because it’s a community that anyone can join at any moment. And, indeed, I’ve heard Covid described as a “mass disabling event.”

    And I wanted to ask you, what is Covid showing us about policy responsiveness, about movement responsiveness? What are some of the impacts when the disabled community grows, as it were, suddenly in this way?

    KK: I appreciate you pointing out that anyone can become disabled at any time, because that is part of what I think the US economy is actually facing right now, with the growth of the disability community in a very abrupt way because of Covid.

    And we do have the largest influx of the community that we’ve seen in many, many years, and that has really caused the workforce to try to make an adjustment. And that adjustment’s been slow, it’s been difficult, because we have so many people that now cannot do the job that they used to do because of long Covid. And that is extremely difficult, not only for the entire, again, US economy, but for that person.

    We’ve had some great pieces, actually, through one of the projects at the Century Foundation, called the Voices of Disability Economic Justice project, with people talking about this, and what it means to become disabled because of long Covid, and not be able to do the things you used to be able to do so easily every day.

    Our policies have not changed fast enough to be able to support everyone. That includes our healthcare policies. That includes, now, our education policies. And it includes, again, those workforce policies and accommodations that people need.

    WaPo: How long covid could change the way we think about disability

    Washington Post (7/23/22)

    JJ: There was a thoughtful piece from last June in the Washington Post that talked about what supports and education veteran advocates can offer to “long haulers,” dealing with not just new problems, but with, as you’re saying, a new identity. And it also talked about tensions within the disability community, which as with many marginalized communities often finds itself struggling over limited resources. And now there are millions more people involved.

    And it’s an interesting situation. But I just wanted to lift up—there was one quote in this piece from a guy who says long Covid gives a chance to make some updates to health policy, in part because the condition is affecting, he said, “a different mix of people than what we’ve seen in the traditional disability population.”

    Now, I’m not trying to stir up trouble here, but it sounds a little like “we’re getting a better class of disabled now, not that ragtag group you’re used to,” and there’s an implication, in other words, that now maybe there will be the power to change things. And I guess that arouses mixed feelings in me, is what I want to say.

    KK: It does. And I think there’s a couple ways to unpack that. One, there’s a narrative out there that the disability community are kind of fakers and takers. That’s a narrative that we have to undo, because it’s an incorrect narrative, and it’s a narrative that really doesn’t actually help, it only harms the disability community, because, again, anyone can become disabled at any point in their life.

    That quote that you mentioned, it really ignores the fact that there’s a false narrative that’s already circulated about the disability community.

    But I think, on the other side, what the quote does acknowledge is that having a whole new influx of people to the community gives a renewed energy, and a renewed movement, to the policies that are needed.

    When all of the sudden you have a bunch of other people that have entered any community, any movement, there’s different energy behind it. You know, all of a sudden, we have senators saying, “I need this, I am part of this community. I guess now we need a bill on it.”

    That’s very different, and we don’t always see that. And so we do get some of that renewed energy, and that’s really important. But at the same time, we have to balance that with the fact that we have a false narrative that exists. And that just breeds into the stigma against disability that we really need to try to overcome.

    JJ: If the comment is partly acknowledging that some of the Covid long haulers have wealth, then one can, very sadly, ask, for how long?

    The nexus between disability and poverty is central, and of course that’s key to the Collaborative’s work. I’m not sure that it’s really understood how policy choices—not disability, but policy choices—put disabled people in struggle, and keep them there. Can you talk a little bit about that?

    Kim Knackstedt

    Kim Knackstedt: “Undoing that entangled web of policies that really focus on keeping people with disabilities in poverty is extraordinarily difficult.”

    KK: Yes, the problem is I could talk about that for hours! Disability and poverty are so connected, and some say the whole structure and the whole system is broken. Well, unfortunately, the whole system is actually working exactly how it was designed.

    It is keeping disabled people in poverty because that’s how the system was structured. And so it’s not that the system was broken. The system has to be completely corrected. And what I mean by that is that so many of our policies have been designed to keep disabled people out of work, to keep disabled people from actually building wealth, and to keep disabled people from even getting the care that they need to live independently.

    Some of our healthcare policies really actually preference institutional care, not living in a community.

    So undoing that entangled web of policies that really focus on keeping people with disabilities in poverty is extraordinarily difficult, and that’s something that we have to do. Even outside of wealth, I would say, social and political capital that people hold? Leveraging that as we start to make some work on all of this is going to be really important.

    JJ: CounterSpin listeners will have heard us referenced the “Medicaid divorce,” in which people have to get divorced in order to keep their health care because if they’re married, or they can’t get married, because together, they make too much money. It’s cruel, and it’s often hidden, I think, to other folks.

    KK: Yeah, absolutely. And there’s so many choices that I think so many people do have to make, and it’s just how you start to allocate funds to try to just live day to day.

    I mean, I acknowledge that I have privilege, because I work at a great place that has health insurance. But I also am a high health cost user; I have infusions that without insurance would be $30,000 a month. Thank goodness for insurance. I also have to spend a lot of money towards that, because I could never qualify for Medicaid to help pay for that.

    So you think about, even though I acknowledge the privilege that I have to be able to afford what I do, the whole system is stacked against you when you are a person with a disability and trying to get the care you need, from the cost of prescriptions, the cost of specialists, the cost of getting home, community-based living, the cost of a direct care worker, trying to access the workplace you need. And the list goes on.

    JJ: And the Disability Economic Justice Collaborative is saying there are things we can do, there are policy changes that we can make, that can, as you’re saying, not tweak and not fiddle with and “perfect” the system that we have, but really fundamentally overhaul it.

    Century Foundation: How to Embed a Disability Economic Justice Policy Framework in Domestic Policy Making

    Century Foundation (1/12/23)

    KK: Absolutely. So much of what we do does tinker on the edges, and we’re saying we need to stop just tinkering. And so much of disability policy is siloed, and again, we’ve been caught in this web that I mentioned before for so long.

    Instead, what we’re saying is, let’s bring a lens of disability to all economic policymaking: food security, transportation, housing.

    What we are trying to do at the Disability Economic Justice Collaborative is really bring a disability lens to all economic policymaking. And that’s really the goal, whether, again, you’re doing all of these different policies, it’s trying to embed disability into every single piece that you are working on.

    So we are saying, let’s center the values that disabled people need, and bring that into all of our domestic policy work.

    So I’m going to give an example. We believe every disabled person needs to have access to reliable, affordable and accessible transportation. That’s something that’s fundamental. And so we want to see that, no matter what the bill is, what the proposal is, what the law is, regulation—I could go on, right?—that’s the goal we want to see throughout. And the same thing for healthcare, access to healthcare they need, access to food.

    And so we’ve developed a framework, we call it the Disability Economic Justice Policy framework; we want to see that embedded into domestic policymaking to really move the needle on how we think about policymaking with a disability lens.

    JJ: Because every issue is a disability issue. And that goes for media as well as for policy. Every story that impacts disabled people should include awareness of the impact, is my feeling.

    It’s not bad to have occasional reports that focus solely on disability or the disabled community. But if you’re reporting rent hikes or food prices or criminal justice, well, disabled people are in that reality, so they should be in the story.

    Do you have any thoughts, finally, about media coverage?

    KK: Yeah, I think it is really important for media coverage to think more about disability. I think one of the things we see is—you’re exactly right, there will be a story about something related to disability and then you won’t see something else until it’s very disability-centric, and everything in between ignores that disability exists.

    And we know that that’s just not how disability is in our lives. Disability is part of the natural human experience.

    And so, very much so, I think disability just needs to be embedded more into the stories that we hear about, and part of the narrative throughout everyone’s life.

    I also would encourage, in the media, that it’s not about disability being an “inspiration.” I think that’s where the lean tends to go when there is a disability-centric story. And it’s just, disability is part of the life that we all live, and here’s the story that happens to be about a disabled person, or a narrative that we’re talking about.

    And so those are some of the pieces that I think would be great to think about more.

    JJ: We’ve been speaking with Kim Knackstedt of the Century Foundation and the Disability Economic Justice Collaborative. You can find their work online at TCF.org. Kim Knackstedt, thank you so much for joining us this week on CounterSpin.

    KK: Thanks for having me.

     

    The post ‘The Whole System Is Stacked Against a Person With a Disability’ appeared first on FAIR.

  • Kim Knackstedt on Disability Policy, Algernon Austin on Unemployment & Race

          CounterSpin230310.mp3

     

    Disability rights activist Judy Heumann

    Judy Heumann

    This week on CounterSpin:  “I wanna see feisty disabled people change the world.” So declared disability rights activist Judy Heumann, who died last weekend at age 75. As a child with polio, Heumann was denied entry to kindergarten on grounds that her wheelchair was a fire hazard. Later, she was denied a teachers license for reasons no more elevated. She sued, won and became the first teacher in New York to use a wheelchair. Media love those kinds of breakthroughs, and they matter. Here’s hoping they’ll extend their interest into the barriers disabled people face in 2023, and how policy changes could address them. We’ll talk with Kim Knackstedt, senior fellow at the Century Foundation and director of the Disability Economic Justice Collaborative.

          CounterSpin230310Knackstedt.mp3

     

    Signs from the March on Washington for Jobs and Freedom, August 28, 1963

    March on Washington for Jobs and Freedom, 1963

    And speaking of problems that aren’t actually behind us: You will have heard that the US is experiencing “blowout job growth,” and unemployment is at a “historic low,” with gains extending even to historically marginalized Black people. Algernon Austin from the Center for Economic Policy and Research will help us understand how employment data can obscure even as it reveals, and how—if our problem is joblessness—there are, in fact, time-tested responses.

          CounterSpin230310Austin.mp3

     

    The post Kim Knackstedt on Disability Policy, Algernon Austin on Unemployment & Race appeared first on FAIR.

    This post was originally published on CounterSpin.

  • When the price on a child’s head is £100k, no wonder adoption in the UK is so toxic

    This is the final article in a three-part series looking at adoption in the UK in relation to mothers and caregivers. Part one, which you can read here, looked at how forced adoption is not a thing of the past – with high numbers of children forcibly removed from mothers by social services. Part two, which you can read here, looked at how systemic racism and ableism pervades the misogynistic UK adoption industry. 

    Adoption in the UK is an industry where children are worth huge sums of money to private companies. The state-sanctioned services who carry out adoptions run on racism, ableism, classism, and misogyny. More specifically, the tactics agencies use to forcibly remove children from chronically ill and disabled mothers are some of the most despicable imaginable. Meanwhile, the private companies running the industry are making tens of millions in profit. So, what price for a mother and child?

    Allegations of fabricating illness

    When a mother is chronically ill or disabled, her experience in family courts regarding residency of her child/children, or adoption, is often laced with prejudice, ableism, and misogyny. Tracey from campaign group Disabled Mothers’ Rights Campaign told the Canary:

    Disabled mothers in family court face multiple prejudices. For example, 70% of learning disabled parents have their children removed, even for mild issues. In other cases, disabled mothers and disabled expectant mothers are disproportionately investigated by social services – with their children being removed.

    Disabled mothers with invisible disabilities such as myalgic encephalomyelitis (ME) and Ehlers-Danlos syndrome (EDS), as well as autistic mothers, are disproportionately likely to have their children removed – despite their children often having the same condition. Social services blame the children’s ill-health on their mothers, who are wrongly accused of harming their child by projecting their own disability onto their children (Fabricated or Induced Illness, FII).

    FII is an under-researched area, but what few statistics there are back Tracey’s assertion up. The majority of accusations of FII are false. Further to this, social services also use the potential for future harm as a reason to forcibly remove children from mothers.

    The ‘possibility of future harm’

    Journalist Cherry Casey spoke to Lisa from Disabled Mothers’ Right Campaign for Prospect, noting she:

    had her daughter adopted against her will in 2005… Lisa knew she needed support, in her case due to complex needs including mental health issues and physical problems which meant she depended on crutches. She argues that while her mental health was a focal point during assessments of her parenting, her physical health, and the support she needed to cope, were never properly considered.

    After several assessment centres – one where she was advised not to use crutches, later leading to a bad fall – her daughter was eventually placed for adoption aged two-and-a-half. Later, after Lisa was diagnosed with Ehlers-Danlos syndrome, she was able to open an out-of-time appeal. “I was diagnosed using the symptoms I had been complaining about [throughout her various assessments]… and it was ruled that social services had acted improperly by not taking my physical needs into account and that if [they had] I may have been able to retain custody.”

    The adoption, she adds, was not based on evidence that her daughter had come to harm while in her care, “but the possibility of some form of future mental, physical or emotional harm.”

    As Tracey told the Canary, the state will also argue that the child’s future wellbeing as an adult is a reason to remove them from their mothers:

    It is assumed that when a child whose mother is disabled grows up, they will inevitably become their mothers’ carer. However, if mothers were given their rights under the Care Act, a child would never need to become a carer. The fact is that it costs money to provide care in the community for disabled mothers and their children. After 12 years of austerity the money councils pay for support in the community has been reduced by 50% – whilst the money for forced removals has increased.

    All this means social services and the state are systematically targeting Black, brown, and chronically ill and disabled women. It’s little wonder, though, given that care and adoption sectors are booming industries.

    Feeding an industry to the detriment of mothers and kids

    Tracy also told the Canary:

    Millions are being spent on privatised children’s homes, fostering, and adoption. When a child is taken from their disabled mother and adopted, the financial obligation councils have under the Care Act to support mothers ceases. In short, they make a financial saving.

    Private companies now dominate the landscape of children’s care. 80% of children’s homes are privately-run, and one in three children are fostered through a private agency. As the Guardian reported, private providers charge councils on average over £3,800 per child, per week for care accommodation. Meanwhile, fostering agencies charge on average £820 per child, per week. These industries turn profit margins of 23% and 19% respectively. Some of the largest companies are even owned by private equity firms.

    The Transparency Project and journalist Martin Barrow investigated the adoption and care industry in the UK. They found that:

    One of the largest [providers of children’s care homes] is CareTech, a company listed on the London Stock Exchange with a value of around £600 million. It pays dividends and buys up other providers in the sector, notably Cambian. Its senior directors are each paid £1 million a year, like directors of other listed companies. CareTech’s business has boomed during the pandemic; last year it was paid almost £430 million by local authorities and its profits rose 20 per cent to £60 million. The company uses a number of different names – Branas Isaf, Park Foster Care, TLC, ROC – capitalising on the ‘local’ credentials of the many former family-run businesses it has acquired over the years.

    The smell of easy money has attracted an even more voracious business model: most of CareTech’s biggest competitors are private equity firms. These are mostly private partnerships based offshore in tax havens like Jersey and Luxembourg. You won’t find it on their websites but companies we know as National Fostering Agency, Polaris and Outcomes First are all owned by private equity firms such as Stirling Square Capital Partners, CapVest and August Equity.

    This monopoly exacerbates already existing social inequalities:

    It is increasingly common for one provider to have interests across all children’s service, from early intervention programmes through foster care, children’s homes, residential schools and mental health care. A child may bounce through the system, frequently changing homes and schools, based n decisions influenced by a provider with a financial interest in each move.

    In the end, it seems the only people benefitting from adoption now are private companies and their shareholders.

    Adoption: snatching children away from their mothers

    Adoption in the UK is little more than a wholesale marketplace for children. It’s easy to see why those controlling it target marginalised children. When the price tag on a child’s head is £100,000, private companies will want the ones that either get them the easiest sales (dual heritage children) or easiest wins (children of chronically ill and disabled mothers who don’t always have the capacity to fight). Social services, medical professionals, and courts are complicit in this. They do the bidding of these private child snatchers without a thought for the impact on mothers and their kids.

    It’s a damning indictment of state agencies, particularly largely inept social services, that forced adoption of children is so rampant. However, anyone with lived experience of social services knows they are invariably judgmental, classist, and not fit to be doing their jobs. Moreover, it’s utterly negligent of local councils who allow this to continue. Despite their protestations of funding cuts, they still have the power to control what their agencies are doing. At the same time, central government is also to blame for allowing the adoption industry to flourish in this toxic way.

    However, the broader picture here is that we as a society allow this to go on. Adoption services serve as a mirror of the UK’s own prejudices of misogyny, racism, ableism, and classism. We live in a society where marginalised mothers are expendable. The state tells us (and we believe it) that their children are ‘better off without them’; that these kids will flourish with their new middle-class families, and that it’s the mother’s fault that they’re in this position in the first place. All of this is categorically untrue – yet this most evil of state-sanctioned industries continues.

    Barely any attempt is made to keep children with their mothers, or to assist mothers with care plans and support. Ultimately, it shows the contempt that the government, adoption agencies, and society more broadly have for marginalised women.

    Featured image via Disabled Mothers’ Right Campaign 

    By Steve Topple

    This post was originally published on Canary.

  • Systemic racism and ableism pervades the misogynistic UK adoption industry

    This is the second in a three-part series looking at adoption in the UK in relation to mothers and caregivers. Part one, which you can read here, looked at how forced adoption is not a thing of the past – with high numbers of children forcibly removed from mothers by social services. 

    The issue of forced adoptions is one that bubbles under the surface in society and is often not recognised when discussing children’s care and social services. However, for the mothers’ affected by it, and those who live in fear of it, social services snatching your child away is a very real and present danger. That’s because agencies are targeting marginalised women and children when it comes to adoption.

    Systemic racism in adoption

    Support not Separation is a coalition of organisations. It fights for the rights of mothers and children against social services and other government agencies. As the Canary wrote in part one of this series, in 2019 the group conducted research into mothers caught-up in family court cases.

    Predictably, nearly half of the women Support not Separation surveyed were Black or brown. The issue of forced separations and adoptions is often driven by both the state’s systemic misogyny, but crucially racism. The latter is particularly rife, with the government’s own figures backing this up. They show, for example, that the percentage of children in care who are dual heritage is double the population rate (10% versus 5%). Therefore, the state is disproportionately separating these children from their mothers. Also, since 2015, the number of white children the state has forcibly removed from their mothers has fallen. Meanwhile, the number of dual heritage children has risen.

    The organisation Adoptee Futures brings together adult adoptees, supporting them in healing from their experiences. It is also working to “reclaim the adoption narrative” from the current, toxic one. Annalisa S. Toccara is the group’s co-founder and CEO. She told the Canary:

    We believe racism is institutionalised in the UK adoption sector. Racist attitudes and biases have been engrained in the system for decades, in addition to a lack of diversity and cultural understanding within the industry. The needs of Black children and families are not being met correctly in the family welfare system. As a result, rather than the government adequately providing funding and support for kinship carers, money is being funnelled into the adoption industry, and Black children are being removed from their families of origin and placed into care. This is especially concerning considering the data shows that Black children are overrepresented in the care system and often experience more harm due to being taken from their families and placed in unfamiliar environments.

    Black children make up 5% of the population, but 8% of children in care. The disparity, as Annalisa explains, compounds already existing issues of anti-Blackness that children face. The adoption industry exploits this for its own profit and Annalisa tells us:

    We believe the government should take further action to provide substantial resources for families in crisis. Adoption is equivalent to putting a bandage on an issue rather than addressing the core causes of why children are put into care, including systemic racism, classism, ableism, and colonialism.

    Support not Separation also found in its research that 94% of women were on low incomes, and at least three-quarters were survivors of domestic violence. However, another intersecting yet supposedly “protected” group under the Equality Act 2010 is chronically ill and disabled mothers.

    Do disabled mothers actually have rights?

    Tracey Norton is the coordinator of the Disabled Mothers’ Rights Campaign – part of campaign group WinVisible (Women with Visible and Invisible Disabilities). The group aims to bring “disabled mothers together” to fight against the state taking their children away. The group told the Canary it is fighting to:

    stop the cruelty and discrimination we face from Council social services and the family courts taking our children away.

    It also wants:

    the support from official agencies which we are entitled to by law.

    The Canary spoke with Tracey about the group and its aims. She told us:

    We always make the point that disabled mothers and their children are particularly targeted by social services. This results in children being traumatically removed from their mothers – as disability is seen as harmful to children. Disabled mothers are entitled to support in the community to support both themselves and their children under the Care Act and the Children Act. However, because the family courts are held in secret, the injustice and trauma of forced removals including forced adoptions, just because a mother has a disability, is hidden from public view. There is no accountability for decisions made there.

    Targeting chronically ill and disabled women

    The situation when a chronically ill and/or disabled mother is facing social services or the courts is often harrowing. And, in no uncertain terms, it is laced with prejudice and discrimination. Tracey has experienced it first-hand. She told the Canary:

    I am a mother with an invisible disability. My child has Ehlers-Danlos syndrome (EDS) and we have been directly affected by family court. I fought long and hard to get my child the care he needed in the community. However, when they decided to cut my funding, I fought to keep it – causing them to drag me through family court with false allegations. My own invisible disability was used against me in court. A judge with no medical qualifications was allowed to say that he did not believe the results of my MRI scan and dismissed my issues as a lie. My child was removed and I fought a long battle to get him home.

    Whilst he was in care, he was placed in inappropriate accommodation which was inaccessible for his wheelchair, and with no accessible bathroom. He spent the next two years not having a bath or shower and having no sheets on his bed. He was denied access to medical appointments or appropriate education – and when I finally got him home I had to throw everything out as it was infested with fleas and his hair matted. He spent his time in care living on bread and hummus, and was skin and bones when he returned home to me – having his first home cooked meal in two years.

    Sadly, Tracey’s story is not unusual.

    This journalist knows one mother who was sectioned under the Mental Health Act because social services believed she was lying about her chronic illness (which was also EDS). She then had to pretend she was well to fight a two-year court battle to get custody of her child. I know another mother who lives with enduring psychological distress. She is still in a battle with social services after having her children forcibly removed. Said services lied about her, falsified evidence, breached regulatory guidelines, and – in a situation similar to Tracey’s – put her children in appalling foster care.

    Another mother was also subject to social services forcibly removing her five children. That was until she, too, was diagnosed with a chronic, incurable illness, eventually getting her kids back. This is all just on one council estate in south London. The common factors are that, in all the cases, the children were dual heritage or Black, all the mothers were reliant on social security, and they were all either chronically ill or living with mental health issues.

    For people who are forced to encounter the adoption system, it’s clearly not a system that is working well. The system takes already existing racism, classism, and ableism and focuses that on vulnerable people. None of this can reasonably be considered an accident of the system. Rather, it’s the system working as it’s supposed to.

    Part three in this series will be looking at what the state does to take chronically ill and disabled mothers’ children away from them. It will also look at how adoption has become a for-profit, private industry. 

    Featured image via perpetual.fostering – Wikimedia, resized to 770×403 under licence CC BY 2.0

    By Steve Topple

    This post was originally published on Canary.

  • People with ME are dying while politicians do nothing and the NHS stands idly by. Enough.

    The author of this article is a co-founder of the chronic illness campaign group discussed.

    A protest is taking place on Wednesday 8 March at parliament. It is for people living with myalgic encephalomyelitis (ME) – a chronic systemic neuroimmune disease not dissimilar to long Covid. You can read more about ME and its symptoms here. Medical professionals generally claim there is no known cure for ME. However, currently there are also some high-profile cases of the NHS severely neglecting seriously ill people living with ME. Worse still, three people have already died in recent months. So, with fear and anger among the ME community growing, a campaign group is taking action. We need your support with it.

    The Chronic Collaboration

    Myself and my chronically ill and disabled partner Nicola Jeffery launched the Chronic Collaboration in 2021. It’s a campaign group – check out its Twitter here. As we stated on Twitter, it aims to be:

    A new resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equality.

    It’s early days yet. But through lived experience of chronic illness and learned approaches from other types of activism, we aim to change the way our community fights for its rights. First in our sights was the National Institute for Clinical Excellence (NICE) delaying the new guidelines on ME.

    In September 2021 we held a protest outside its HQ. NICE eventually backed down, and published the guidelines. They are by no-means perfect – but it was a better result than it could have been. Since then, Nicola has had a prolonged period of severe ill health. However, recent events in the ME and chronic illness communities compelled us to act again.

    Sami and Alice: severe ME

    As I previously reported, Sami Berry is currently dying in an NHS hospital. She lives with severe ME, as well as Ehlers-Danlos syndrome (EDS) and epilepsy. Campaign group ME Action UK said:

    Sami is very concerned she is going into intestinal failure as severe ME and EDS has made her body unable to digest nutrients even through a feeding tube. NHS doctors are refusing to provide her with drugs that previously helped her regain nutritional levels, or refer her to a specialist. She is vomiting repeatedly, and cannot even keep 4ml down. It has been 26 days [at the time of writing] without food. Her blood sugar levels are dangerously low. Sami and her family are requesting that the hospital transfer her care to specialists who understand how to treat severe ME and EDS.

    At the time of writing (Thursday 2 March), I was told that the hospital Sami was at had tried a percutaneous endoscopic jejunostomy (PEJ): a feeding tube inserted directly into the small intestine. However, this had reportedly not worked properly and Sami was still struggling. Her husband Craig said:

    I am slowly watching my wife die in front of my eyes. The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels… Her consultant has said that he will not necessarily take the advice of the specialists

    Sadly, Sami is not the only one in this awful situation. As the Times reported:

    Alice Barrett, 25, has severe myalgic encephalomyelitis (ME) and is being cared for by Royal Devon University Healthcare NHS Foundation Trust.

    Her father, Mark, said that doctors were ignoring advice from family and ME experts on how best to treat her. “Alice will die. And we haven’t got much time at all,” he warned.

    Barrett is being treated at the same hospital as Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, who died of ME two years ago.

    Barrett needs to be fed via a tube, and the hospital has said it is NHS policy that she must be inclined at 30 degrees for this to happen. However, her family say her condition means she cannot tolerate being anything other than horizontal.

    On Wednesday 1 March, I was told the hospital had reportedly agreed to tube-feed Alice at an angle of five degrees. It was unclear at the time of publication whether this had worked. There is a petition in relation to Alice’s situation you can sign here.

    Sami and Alice both being in life-threatening conditions in the NHS at the same time is bad enough. However, their stories emerged against a backdrop of three people with ME having died since Christmas 2022: Anna Fitzgerald-Clark, Kara Jane Spencer, and Sarah Louise Mclure.

    Three demands for ME

    All these women’s stories point to systemic failings within the NHS, which you can read more about here. For example, as I previously wrote, the new NICE guidelines say:

    doctors should refer patients to ME specialist teams. While these do exist in England, they are all varied. Some are led by psychologists like Surrey and Hull; others like the Yorkshire Fatigue Clinic involve immunologists. Moreover, others like in Suffolk have been stopped. So, the idea that people can see specialists is a postcode lottery.

    With people dying, others seriously ill in hospital, and anecdotal reports of the NICE guidelines not being properly followed – as a person with ME, and as the carer of that person, Nicola and I cannot stand by and do nothing. So, the Chronic Collaboration will mobilise again:

    We’ll meet at Old Palace Yard at 12:30pm on 8 March with three demands. At 1pm we’ll hand them to parliament, to be given to the All Party Parliamentary Group (APPG) on ME and the health and social care select committee. Then, at 1:30pm, we’ll walk to the Department for Health and Social Care (DHSC) and hand our three demands in there, too. These three demands aim to address the underlying issues with NHS care and support for people living with ME. They are:

    #DontLetMEDie: THREE URGENT DEMANDS: THAT THE APPG ON ME URGENTLY CONVENE A MEETING TO DRAW-UP ADVICE TO MPs ON HOW TO INTERVENE ON BEHALF OF SEVERE ME PATIENTS. THAT THE HEALTH AND SOCIAL CARE SELECT COMMITTEE URGENTLY CONDUCTS AN INQUIRY INTO THE TREATMENT BY THE NHS OF ALL POST-VIRAL ILLNESSES (INCLUDING LONG COVID AND ME/CFS) AND THEIR ASSOCIATED CONDITIONS (FOR EXAMPLE, POTS, GASTROPARESIS, CRANIOCERVICAL INSTABILITY). THAT THE DEPARTMENT FOR HEALTH AND SOCIAL CARE URGENTLY CONDUCTS A REVIEW INTO NHS ENGLAND, HEALTH EDUCATION ENGLAND AND THE GENERAL MEDICAL COUNCIL'S IMPLEMENTATION OF THE NICE GUIDELINES ON ME/CFS - PARTICULARLY REGARDING SEVERE ME.

    We’ll be using #DontLetMEDie on the day. Moreover, what I wrote about the Chronic Collaboration’s NICE protest in September 2021 also applies to its 8 March demo:

    people living with ME and other chronic illnesses often can’t protest in person. If you can’t attend, and someone can’t attend on your behalf, we still want to see you there. Email a picture of yourself to hello(at)thechroniccollaboration.com and we’ll make sure… [parliament] sees your face.

    The community needs allies. This is why we want as many people to support this as possible: from NHS workers to other chronically ill and disabled people via non-disabled campaign groups, MPs, and well-wishers. Chronic illness doesn’t discriminate (even if the system does). With the emergence of long Covid, more and more people are affected. It could be you next – or someone you know and love.

    For this to be effective, it’s crucial that there’s a large social media presence also. We’re asking people to use the three demands poster above and tweet @NHSEngland @DHSHgovuk @gmcuk using #DontLetMEDie (note the capitalisation, it’s crucial) – saying why these organisations need to act. People need to do this from 12:30pm on 8 March. We’ll also be livestreaming the protest on the Chronic Collaboration’s Twitter.

    #DontLetMEDie

    It might seem inexplicable to some that, after NICE’s new guidelines, the NHS would still dangerously neglect people living with ME. However, that is the reality – and from where I’m viewing it, the situation actually seems to have worsened. There needs to be targeted action to bring this to the attention of people who may make change: politicians, civil servants and government. The community needs to look to those that can fight and allies that can support it. So, join us in person or online on Wednesday 8 March. We owe it to each other.

    Featured image via the Chronic Collaboration

    By Steve Topple

    This post was originally published on Canary.

  • A protest just highlighted how adoption is the state-sanctioned, forcible removal of children from marginalised women

    This is the first in a three-part series looking at adoption in the UK, focusing on marginalised mothers and caregivers. 

    The state’s adoption of children has effectively become an industry in recent years. However, not all mothers and caregivers are subject to social services taking their children from them. This is because the state is disproportionately targeting women the system marginalises – be it due to ethnicity, class, disability, or chronic illness. It shows that systemic racism, ableism and classism pervades a service that is supposed to support children, not snatch them from their mothers. And the driver for all this is private profit.

    Support not Separation

    Support not Separation is a coalition of organisations. It fights for the right of mothers and primary caregivers against social services and courts. Specifically, Support not Separation deals with adoption and forced separation, which is when these institutions attempt to remove children from mothers. It says on its website that:

    We are a coalition of organisations and individuals who have experienced or witnessed the damage caused by the forced separation of children from their mother or other primary carer and are determined to change this desperate situation.

    Once a month, on the first Wednesday, the group protests outside the Central Family Court in London. On 1 March it was there again – as well as holding a “virtual” protest online. Support not Separation specifically focuses on the intersections within adoption – like class and disability:

    The group also highlights the inherent misogyny that exists in the system, and how it ignores domestic violence from men:

    However, crucially, the group also focuses on how the system forces so many adoptions to take place without mothers’ consent:

    Other campaign groups are involved. WinVisible is a group for women living with visible and invisible disabilities. It highlighted that it was the sixth anniversary of the protest:

    At the heart of Support not Separation’s work, though, is the state of adoption services in the UK and how they fail women and children.

    Adoption: a state-run industry

    Adoption in the UK is effectively a state-run industry, with private companies making hundreds of millions in profit. However, all too often adoption is no longer in the child’s best interests. Nor are they adopted with the mother’s explicit consent. It is now driven by profit motives and underscored by racism, prejudice, and classism. It’s unsurprising when the value of a child to these private companies is around £100,000.

    As Cherry Casey wrote for Prospect in October 2022, “forced adoptions are not in the past”:

    The UK is unusual, compared to the rest of Europe, for the frequency of forced adoptions. Exact statistics are difficult to pin down, but data from 2014 suggests that almost half of the 5,050 children adopted in the previous year were given new homes without their parents’ consent. In England alone, 80,000 children were removed from their parents in the year up to March 2021. Of those, 4,600 had a “placement order granted” for their removal. The context behind the removal of the remaining 76,000, is less clear.

    According to Alexandra Conroy Harris, a legal consultant for CoramBAAF… this means the removals “will almost certainly have been made without the consent of the child’s parents.” The 2021 data also shows that of 2,270 children “placed in adoption,” only 290, or 13 per cent, were adopted “with consent”.

    This is not news to Support not Separation. It conducted research in 2021 based on 219 mothers and 411 children involved in family court cases (for example custody battles or fighting against social services). The group said that:

    Over half the mothers had had their children taken from them (a significant increase from 2017). In 30% of cases the children were living with the abusive father; 14% had children in foster care. And 10% had children adopted without their consent. This shocking figure gives lie to the idea that forced adoptions are historic, they are in fact a present-day policy of punishment and social cleansing

    However, behind the figures is the core of the issue: social services are disproportionately targeting marginalised mothers. Within in this pervades a culture dominated by systemic misogyny, racism, ableism and classism.

    Parts two and three in this series will be looking at the intersections of these issues – and how adoptions are driven by companies’ profit motives, not children, and mothers’ and caregivers’ wellbeing. 

    Featured image via the Disabled Mothers’ Rights Campaign

    By Steve Topple

    This post was originally published on Canary.

  • The DWP will give staff bonuses for forcing more Universal Credit claimants into work

    The Department for Work and Pensions (DWP) is once again going to threaten Universal Credit claimants with sanctions. This will happen if they don’t follow new rules around finding work. Worse still, DWP staff will be given bonuses for getting more benefits claimants into work. So, effectively, the DWP is incentivising its Jobcentre advisors to push as many claimants into any job possible – regardless of whether the work is right, or the claimant can even do it.

    Universal Credit: claimants will be targets for staff bonuses

    BBC News reported on a leaked internal DWP document which outlined the new scheme. The department will reportedly be running a pilot of it in 60 Jobcentres. BBC News noted that:

    Staff will be set targets, or what the document calls “into work stretch aspirations”.

    The DWP will also force Universal Credit claimants who have been on the benefit for 13 weeks to do more to keep getting their money. They will have to go to the Jobcentre every weekday for two weeks. If they don’t do this, the DWP will sanction them. The DWP is calling this “intensive support”. With this, the department will make a league table of which Jobcentres force the most Universal Credit claimants into work. The DWP will give staff at the top-performing centres bonuses of £250 in shopping vouchers. ‘Runners-up’ will get £125.

    ‘Almost bully like’

    The DWP told the BBC that:

    It is right that we reward our staff when they go above and beyond, and helping people to secure, stay in, and succeed in work is a key government priority.

    However, people on social media quickly pointed out the numerous problems with the DWP’s plan for Universal Credit claimants.

    A Labour councillor noted how the DWP plan would not support the claimants it needed to:

    Someone else pointed out the issues for chronically ill and disabled people – and also the cost to claimants of daily Jobcentre visits:

    Another Twitter user summarised how staff treat Universal Credit and other claimants:

    Overall, a former DWP staff member summed up some of the problems:

    Of course, the reality is that this is just another callous stunt from the DWP. Moreover, the plan is one it’s used before – to disastrous effect.

    DWP: bringing back deadly policies

    As the Guardian reported in 2013, the DWP was caught up in a scandal over targets. A leaked internal email revealed that Jobcentres were in league tables back then. They ranked the number of claimants staff moved onto tougher benefit regimes – including sanctions. However, the department denied this was widespread policy – despite clear evidence to the contrary. At the time, the number of sanctions was also at a record high.

    Moreover, the DWP giving staff targets in 2013 coincided with the emergence of evidence of claimants dying after the department stopped their benefits by sanctioning them, as well as people taking their own lives after assessors told them they were fit for work.

    The DWP’s new plan is merely a repackaging of this previous, horrendous policy. Sadly, it is not surprising that the department is willing to treat Universal Credit claimants like figures on a spreadsheet. Successive governments have dehumanised people on benefits to the point where the department can do a full circle by bringing back a policy that horrifically failed. Yet it is likely many people won’t bat an eyelid.

    Featured image via the Guardian – YouTube, Paisley Scotland – Flickr, resized under licence CC BY 2.0, and Wikimedia 

    By Steve Topple

    This post was originally published on Canary.

  • A woman living with ME and EDS is dying in front of her husband’s eyes in an NHS hospital

    A woman is fighting for her life in hospital after doctors refused to let her see specialists that may be able to help her. She lives with severe chronic illness – myalgic encephalomyelitis (ME) and Ehlers-Danlos syndromes (EDS). So, her husband has issued a desperate cry for help on her behalf.

    Sadly, her story will not be unfamiliar to some people. This is because NHS treatment for this disease is at best dire – and at worst, life threatening.

    ME and EDS

    ME is a chronic systemic neuroimmune disease, not dissimilar to long Covid. Medical professionals generally claim there is no known cure for ME. As the Canary previously wrote:

    Some doctors have managed to get patients better. Yet only around 6% of people with ME have remission from the disease. But the cause of it is often clear. Because in around 50% of cases, people get ME following a viral infection. It’s almost as if the virus never leaves them. Some studies have shown people with ME have a constant, increased immune system response. It’s like the person’s body thinks it’s constantly fighting a virus which isn’t there.

    You can read more about ME and its symptoms here.

    EDS is a chronic, genetic, hereditary illness. It’s made up of a group of connective tissue disorders. This means that a person’s collagen is defective. As the Canary previously wrote, in EDS, collagen doesn’t work properly:

    Imagine a bungee rope that doesn’t spring back up, or a hair band that isn’t taut. That’s what EDS is like. Most parts of a person’s body are not held in place correctly – so none of them work the way they’re meant to. There are currently 13 types of EDS. Some are life-threatening, like vascular EDS. Others are less aggressive, like classical. The hypermobile subtype is the only one without a genetic marker. But all are impairing in their own way.

    You can read more about EDS and its symptoms here.

    To live with one of these chronic illnesses is bad enough. However, to live with both and more can be catastrophic – as Sami Berry’s situation shows.

    Sami: doctors refusing to give the right support

    Sami formerly worked in the NHS before becoming severely ill. She lives with ME, EDS, and epilepsy. And since November 2022, she has been in hospital fighting for her life.

    Campaign group ME Action UK said in a press release:

    Sami is very concerned she is going into intestinal failure as severe ME and EDS has made her body unable to digest nutrients even through a feeding tube. NHS doctors are refusing to provide her with drugs that previously helped her regain nutritional levels, or refer her to a specialist. She is vomiting repeatedly, and cannot even keep 4ml down. It has been 26 days without food. Her blood sugar levels are dangerously low. Sami and her family are requesting that the hospital transfer her care to specialists who understand how to treat severe ME and EDS.

    Some of the major complications with EDS are gastrointestinal. As the charity Ehlers-Danlos UK wrote, in some types of the illness the most severe form can be gastroparesis. This is where the stomach does not empty, meaning food cannot pass into the small intestine. The Mayo Clinic noted that:

    Gastroparesis can interfere with normal digestion, cause nausea, vomiting and abdominal pain. It can also cause problems with blood sugar levels and nutrition.

    It is unclear if this is what Sami is living with. However, if she did have gastroparesis and then had severe ME on top, this could make her critically ill.

    ‘Dying in front of my eyes’

    Sami’s husband Craig said in a press release:

    I am slowly watching my wife die in front of my eyes. The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels. Her epilepsy has returned after three years. Her consultant has said that he will not necessarily take the advice of the specialists, again with no explanation. The PALS [Patient Advice and Liaison Service], dietary, nursing team and general surgeons have all voiced confusion about what the doctors are doing. I’m terrified I’m going to lose my wife because the doctors refuse to treat her inability to absorb nutrients.

    ME Action said of Sami’s situation:

    Sami and her husband, Craig, have made the wrenching decision to go public with this story because they fear Sami will die if the NHS does not begin to take her situation seriously, and provide adequate care.

    The organisation said in an update on its website that:

    As of Wednesday the 8th of February following a Care Team meeting, Sami has no confidence that she will receive even the minimum of care she needs to stay alive, much less have a quality of life. While Sami has finally been given a tertiary to an expert, it is not scheduled until March 8th and will be done through private pay. Her past experience with her hospital care and what she has been told by her present consultant have made her extremely concerned that the specialist’s advice will not necessarily be taken on board and immediately implemented. She is running out of time.

    Severe ME can have tragic consequences

    However, the concern that ME Action highlighted is that people living with ME have previously died due to it:

    • In 2021, Maeve Boothby O’Neill died from severe ME at the age of 27 after the NHS essentially let her starve to death. She was denied a feeding tube, and later denied total parenteral nutrition, which likely would have saved her life. An inquest into Maeve’s situation is expected to be held later this year. Maeve’s father wrote about his daughter’s tragic story for the Times.
    • In 2018, Merryn Crofts died at the age of 20 after she starved to death due to severe ME.
    • In 2003, 32-year-old Sophia Mirza died from severe ME after having been forcibly removed from her home and sectioned to a psychiatric ward, while the NHS failed to treat her underlying conditions that led to her death.

    Tragically, two more people have recently died after living with severe ME as well.

    Anna Fitzgerald-Clark died on Christmas Day 2022. She lived with severe ME, but little information exists online about her. She does have a page where people can donate to charity Action for ME – here.

    Then, just after New Year’s 2023, Kara Jane Spencer also died. She was a talented singer-songwriter, who recorded an album to raise money for ME research. Her representatives said in a statement that:

    In the end her body was too frail to survive. Her spirit remained strong till the last, and she faced the end with the same incredible courage that she showed throughout her illness.

    Kara was a very special young woman who embraced life with love, generosity and endless determination. To know her was to know a unique human being, whose spirit never wavered despite the most tremendous suffering.

    People can donate to Kara Jane’s campaign here.

    It is Sami and her family’s fear that she, too, will end up so unwell that she eventually dies. However, it seems currently that the NHS hospital she’s in is failing to recognise this – which is of little wonder, given the scandal surrounding the treatment of both ME and EDS.

    Chronic illness: chronically psychologised

    ME has been marred by controversy – not least being the flawed and dangerous treatments which the National Institute for Clinical Excellence (NICE) only took out of its recommendations in 2021. Meanwhile, people living with EDS are often misdiagnosed, and some of the secondary conditions caused by the illness are not currently treated by the NHS – like atlantoaxial instability. However, medical professionals often treat both these conditions as psychological – that somehow, people are making their illnesses up.

    As the Canary previously wrote of ME:

    People living with it have for decades been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. Much of this comes from the now-discredited PACE trial… It found that people could recover from the disease by having cognitive behavioural therapy (CBT). In other words, people living with a very-real, viral-based illness should just ‘think themselves better’. Essentially, the trial pushed the notion that the disease was part-psychosomatic or ‘made up’ by patients. But the trial’s findings haven’t held up, with its proponents accused by some of scientific fraud and causing potentially the “biggest medical scandal of the 21st century”.

    It’s a similar story for EDS. As the Canary previously wrote:

    The story of Antonia Payne-Cheney, whose mother I interviewed at length, is one example. Medical professionals disbelieved Antonia [who lives with EDS], branded her a “drug seeker” and said her mother was making her illnesses up. All of this was simply not the case. Part of this is down to professional ignorance. Some of it is due to the PACE trial’s findings also being applied to EDS. And some of it is down to the NHS not even recognising many of EDS’s cluster syndromes.

    Sami may well be facing prejudice and disbelief based on both these illnesses.

    Fighting for Sami – and every chronically ill person

    Sami’s condition is clearly critical. She desperately needs an intervention from an external party – be that a charity, advocate, politician or other medical professionals. This needs to get her the specialist treatment her conditions warrant. Whether or not that happens remains to be seen. If you wish to support Sami, you can contact ME Action here.

    However, the broader picture is that her situation is far from unusual. Doctors all too often neglect chronically ill and disabled patients. Research often misses vital clues to pathology. Worse, some research makes life for the people affected even harder. Moreover, the crossovers and links between these various conditions are sorely under-researched.

    Until the medical profession banishes psychologisation, organisations spend more money on research, and governments and healthcare providers invest more in treatments, Sami and others will continue to suffer on the NHS’s watch. Everyone involved in ME and EDS must work together to ensure that no one goes through what Sami currently is, ever again.

    Featured image via ME Action UK

    By Steve Topple

    This post was originally published on Canary.

  • We now know the DWP is still not properly increasing Universal Credit in April

    The Department for Work and Pensions (DWP) will be increasing benefits by 10.1% in April. These include payments like Universal Credit. However, there’s a major problem. In fact, people’s money won’t really be going up enough to cover the cost of rising prices. So, people reliant on benefits are going to be worse off than before the coronavirus (Covid-19) pandemic.

    On Universal Credit? Here come the cuts

    Think tank the Institute for Fiscal Studies (IFS) has crunched some numbers. It’s worked out how much April’s benefits increase is actually worth when you factor in price rises (inflation). This is called “real terms”. The chaos with inflation has hit the poorest people the hardest:

    Figure 3. Inflation by income decile, January 2023

    The IFS says that benefit claimants won’t actually be seeing an increase in April, overall. In reality, the DWP will be taking people’s benefits back up to the rate they were at in April 2022.

    That is, if you’re on Universal Credit, your money will only be worth what it was a year ago. This is because everything is now more expensive. Moreover, you’ll still be worse off than before the pandemic. Look at the difference between “2019Q2” and “2023Q2” in the graph below:

    Figure 12. Average real benefit entitlement, excluding housing element, for out-of-work claimants of working age
    The dotted line includes the impact of the energy grants and cost of living payments that were paid out during 2022–23 and are set to be paid out in 2023–24. Yellow dots mark April, which is the usual time at which annual benefits uprating occurs.

     

    Crucially, the IFS says DWP benefits rates won’t get back to pre-pandemic levels until April 2025. So, claimants will constantly be worse off until then. Meanwhile, the government is handing out more cost of living payments this year. It’s starting with £301 to some families this spring.

    However, the IFS says that for some people, these payments do not make up for benefits not rising in line with inflation. This includes families with three or more kids and some disabled people. So, in short, these families’ £301 payments aren’t actually worth £301.

    Sadly, this was all very predictable.

    DWP: benefits are not worth the paper they’re written on

    As the Canary wrote in November 2022 when the government announced its benefits increases, another think tank – the Resolution Foundation – warned that people would still be worse off. However, it actually underestimated the scale of the problem. It said people’s money in April 2023 would worth what it was in April 2021, back before inflation was out of control. So, the situation is now worse than that. Couple the DWP’s below inflation rise in April with its increased crackdown on non-working claimants, and you have a perfect storm of willful neglect from the department – and misery for people at the bottom of society.

    Featured image via Birmingham Live – YouTube, Paisley Scotland – Flickr, resized under license CC BY 2.0, and Wikimedia 

    By Steve Topple

    This post was originally published on Canary.

  • DWP is targeting Universal Credit claimants in yet another benefits crackdown

    The Department for Work and Pensions (DWP) is cracking down even further on non-working people reliant on benefits. The department has increased its use of sanctions, it is trialling a new scheme under Universal Credit to force claimants back to work, and is now planning to coerce doctors into not signing people’s sick notes.

    DWP: more forced work programmes on Universal Credit

    As the Canary previously reported, there’s been an increase in the number of economically inactive people since the start of the coronavirus (Covid-19) pandemic. These are people who are not working and not looking for work. Many of these people are chronically ill and/or disabled. However, since then the DWP has started making plans to force some of these people into work. Now it’s also beginning to target people who are claiming benefits but looking for work. For example, as the Times reported, the DWP is trialling a new scheme under Universal Credit. It’s for benefit claimants who have been out of work for three months or more. The Times noted that:

    Ministers are piloting plans for universal credit claimants to attend a two-week programme of daily face-to-face appointments at local jobcentres to help them prepare to return to work.

    Those who repeatedly refuse to attend could lose their entire standard allowance, worth £334.91 a month, for as long as three months.

    The DWP forcing claimants to do work-related schemes – and then sanctioning them if they don’t – has happened before. The department was doing this in the previous decade with schemes like Mandatory Work Activity. In 2012, it was forced to stop sanctioning people who refused to cooperate in the government’s work-experience scheme after outcry from charities.

    Increased sanctions again

    Byline Times reported on Monday 20 February that the DWP had been sanctioning more older people on Universal Credit. It noted that:

    35,608 sanctions were imposed on Universal Credit claimants aged 50 and over between January and October 2022 – 28,061 on claimants in their 50s and 7,547 on those in their 60s.

    What Byline Times failed to mention was that this fits with new DWP policy. As the Canary previously reported, the department is now specifically focused on forcing over-50s back into work. Again, this ties into the number of economically inactive people – as a lot of this group are in that age bracket.

    However, the most concerning move from the DWP is its plans to stop GPs issuing sick notes for claimants.

    The beginning of the end of sick notes?

    The Telegraph reported that chancellor Jeremy Hunt is set to announce DWP-related measures in his Spring Budget. These reportedly include:

    a new approach to how GPs decide whether people are too sick to work.

    Doctors would be encouraged to focus on recommending ways people with long-term illnesses can continue to work with support rather than using sick notes to authorise them to drop out of the labour market entirely.

    The DWP is using the reasoning that work is good for people’s mental health. So, GPs would tell sick people claiming things like Universal Credit to keep working. The Telegraph backed this up with a comment from a think tank boss endorsing this. However, as the Canary has previously written, many professionals have debunked the claim that work equals good mental and/or physical health as nonsense. It partly originates from a DWP policy document – not actual research.

    However, the DWP attempting to invade primary care settings and coerce GPs to do its dirty work for it is not new. In 2017, the department made changes which meant sick notes were no longer enough evidence for people to claim benefits. Then, in 2018 it also attempted to stop GPs signing people off sick. The DWP sent letters to claimants’ GPs after it decided they were fit for work, which stated:

    In the course of any further consultations with [your patient] we hope you will also encourage [them] in [their] efforts to return to, or start, work.

    Moreover, this new drive over sick notes will come after the DWP is already planning further co-working with the NHS. It wants to get mental health professionals to encourage people on disability benefits to go and see DWP work coaches as part of their treatment.

    Universal Credit: the digital workhouse

    Of course, all of these DWP actions are entirely predictable. In the wake of the 2008 financial crisis, the then-Labour government specifically targeted sick and disabled people via the DWP. As the Canary previously wrote:

    The Labour government’s thinking was that because of the recession, it should “increase the pace” of welfare reform, because sick and disabled people “should not fall out of touch with the world of work”. But, as the Guardian noted in 2008, some people might have considered the move a “cynical cost-cutting exercise”.

    So, fast-forward to 2023 and another economic crisis means another DWP crackdown on claimants. It is all too easy for governments to target people reliant on benefits: years of the ‘scrounger‘ narrative, driven by politicians and the media, have already sold this to the public.

    However, this strategy is barely grounded in reliable evidence. For example, experts have previously shown that sanctions do not result in people getting jobs. Moreover, as author Kit Yates pointed out on Twitter, a lot of people are off sick with long Covid. When people are too unwell to work, how is not giving them a sick note going to change that?

    A UN special rapporteur previously called Universal Credit a “digital workhouse”.  Now, with another drive by the DWP to force everyone possible into some sort of work – and leave the rest utterly precarious – that assertion will only get stronger.

    Featured image via the Guardian – YouTube, Paisley Scotland – Flickr, resized under licence CC BY 2.0, and Wikimedia 

    By Steve Topple

    This post was originally published on Canary.

  • DWP in denial over benefit deaths – despite overwhelming evidence of systemic failures

    The Department for Work and Pensions (DWP) is still failing to deal with flaws in its systems that are leading to claimant deaths. That’s the verdict of the department’s own civil servants – based on previously secret reports that an independent media outlet forced the DWP to release. This won’t be news to many claimants. However, it does show that both DWP benefits and how the department deals with claimants are flawed – fatally, at times.

    DWP: secret benefits deaths reviews

    When a claimant dies by suicide, or a vulnerable claimant complains, the DWP is supposed to perform an Internal Process Review (IPR). It started doing these in 2012, but does not publish the reviews. However, thanks to John Pring at independent media outlet Disability News Service (DNS), the DWP has had to publish some of them – albeit only after Pring forced them to. As he wrote, some of the reports showed that:

    a series of suicides between 2014 and 2019 were linked to the failure of DWP staff to follow basic rules that had been introduced in 2009.

    Sadly, this negligence from the DWP and its staff is not new. As the Canary previously wrote, Jodey Whiting took her own life after the DWP stopped her benefits. Her mother Joy Dove is currently back in court, fighting for a new inquest into her daughter’s death. However, at a previous court case the DWP denied that the problems which led to claimant deaths were systemic. At the time, figures showed this was clearly untrue. Now, the reviews the DWP has released to Pring show even more clearly that the department does have systemic – and in some cases life-threatening – issues.

    Failure after failure

    As DNS reported, the DWP has given Pring a list of recommendations from IPRs that the department completed between 1 September 2020 and 14 November 2022. The DWP performed these reviews after the deaths of 46 claimants. These recommendations showed numerous failures in how the DWP and its staff deal with claimants. Pring highlighted the following:

    • Two recommendations that DWP failures to correct “factual inaccuracies” were linked to claimants’ deaths.
    • A suggestion that there were “still flaws in the system for visiting claimants in their own homes” – problems which have led to claimant deaths, like that of Errol Graham in 2018.
    • Problems with “the correct gathering of information prior to claim closure” linked to the Work Capability Assessment (WCA).
    • Around 20 cases involving Universal Credit – many involving staff not dealing with claimant messages in their journals properly.

    However, as Pring noted, one case in particular stood out.

    No compassion

    DNS wrote that:

    One of the most concerning recommendations – made in an IPR examined in January 2022 – is a call for DWP’s PIP department to assure the team overseeing IPRs that “they will explore opportunities for improving compassionate call handling techniques for telephony agents”.

    This is crucial – because we already know that a lack of compassion from DWP staff was noted during the inquest in the death of claimant Phillipa Day. DNS wrote that:

    a DWP “telephony agent” had listened to Philippa sobbing as she described how she was “literally starving and cold”, “genuinely can’t survive like this for much longer”, was “in so much debt”, “literally cannot leave the house”, and needed “a reason to live”.

    But the agent offered no reassurance or acknowledgement of Philippa’s distress, and made no attempt – during the call in the summer of 2019 – to “escalate” any concerns to senior colleagues.

    Phillipa’s case and the information contained in the IPRs clearly point to systemic problems. Yet the DWP is still denying there’s an issue.

    DWP: doing what it’s supposed to

    As the department told DNS after refusing to answer Pring’s questions around systemic problems and the IPRs:

    We support millions of people every year and our priority is they get the benefits they are entitled to as soon as possible and they receive a supportive and compassionate service.

    In the minority of instances where this does not happen, we have established procedures to investigate and learn lessons through, for instance, the serious case panel and internal process reviews.

    The problem is that the DWP is not learning lessons because it is simply not supposed to.

    Benefits in the UK are not administered as compassionate ‘social security’ – something the state provides for people who, for whatever reason, are unable to work. Successive governments have made benefits highly stigmatised – something only ‘scroungers’ get, and at a rate of pay sometimes barely enough to keep people alive. They have intentionally decimated the welfare state, in a bid to save as much money as possible while forcing as many people into work as they can. The end result has been at least 35,000 people dying on the DWP’s watch – people like Jodey. There is nothing compassionate about that – so why would the department and its staff behave any differently? Governments and capitalism want the DWP to be repressive, punitive and malicious – even if this ends up in claimant’s dying. Compassion doesn’t enter into it.

    Featured image via the Guardian – YouTube and UK Government/Wikimedia

    By Steve Topple

    This post was originally published on Canary.