English councils handing huge extra care bills to disabled and mentally ill adults

Charities draw up list of charges they describe as ‘care tax’ resulting from national underfunding

By Robert Booth

Adults with a disability or mental illness are receiving extra care bills running into thousands of pounds that they say could force them to cut back on food and heating and threaten their social independence.

Amid a care funding crisis, some English councils are quietly increasing charges to people with learning disabilities and mental illness, in effect clawing back welfare payments and leaving some working-age adults with little more than £3 a day to spend.

People facing the charges fear they will be unable to afford enough clothes and worry that basic pleasures like swimming trips will have to stop. One single man living with bipolar disorder said he may have to put down his dog because he will be unable to afford to look after it.

Care charities have drawn up dossiers of charges they describe as a new “care tax” and say it is a result of national underfunding of social care. The Health Foundation has estimated that at least an additional £6bn a year is needed to meet growing demand, rising to £14bn if the country wants to improve access to care and pay more to staff, many of whom earn minimum wage.

Mencap, the learning disability charity, said it had received dozens of “concerning” calls to its helpline about the issue, and its chief executive, Edel Harris, said it was “causing huge distress for them and their families, ​and leaving many without enough money to cover their additional needs”.

Some people are refusing to pay and are considering legal challenges. Care Act guidance says charges must be “reasonably practicable” for people to pay and that the approach to charging should promote “independence, choice and control”.

One of the councils levying increased charges, West Sussex county council, said that while it had previously charged working-age care recipients less than Whitehall rules allowed, increases were now necessary because of “decreased funding from central government”.

Care recipients in the county have seen weekly charges rise sharply, in one case from £5.59 to £83 a week, and in another from £40 to £151 a month. Matthew Welch, 22, who has cerebral palsy, has seen his care contribution more than double to £77, leaving him with just £23 a week from his welfare benefit, a move his mother, Sarah Welch, described as “appalling”.

Sue Livett, the managing director of the Aldingbourne Trust, a charity in West Sussex that provides care for people with learning disabilities and autism, said at least 50 families had complained about increased charges.

A council spokesperson said: “Our charging arrangements follow national guidance and are based on an individual assessment of a person’s financial circumstances. We have asked people to contact us if they will find it difficult to pay so we can work with them on an individual basis.”

A parent in Staffordshire said their family had been hit with a backdated bill exceeding £20,000 for their adult children with learning disabilities.

“It’s disgraceful,” they said, requesting anonymity. “They have no opportunity to go out and earn money on their own. They rely completely on benefits.”

Also in Staffordshire, a young adult with complex learning difficulties who needs round-the-clock care was sent a bill demanding he pay £88 a week towards the costs, equivalent to £4,500 a year. It has to be taken from his universal credit payments and leaves him with just £25 a week for other expenses.

His mother, a hairdresser unable to work during the pandemic, said she was “absolutely furious” and it meant they would not be able to afford enough clothes for her son, which is a particular issue owing to his incontinence, plus it could prevent him from going to the cinema or the swimming pool with his carers.

“It’s a huge effect on his quality of life,” she said. “He won’t have any variety in his day. We are not acknowledging that people are individuals and have needs in their lives.”

Dr Richard Harling, the director of health and care at Staffordshire county council, said the amount people were asked to contribute was “based on what they can afford to pay while still being left with income to meet their living costs”.

He added: “If a person feels they are contributing too much, they can contact us to appeal their financial assessment.”

Social Care Futures, a coalition of care givers and receivers, has received more than 150 reports of rising charges. “Escalating charges must be capped and there must urgently be a significant investment in social care, our lives and freedom,” said Anna Severwright, the coalition’s convener.

The Department of Health and Social Care has been contacted for comment.

David Jones, 60, lives alone in West Sussex with bipolar disorder, which 10 years ago rendered him unable to work.

The former newspaper subeditor relies on two hours of support a week to help him keep his flat in order but is facing an increase in his contribution for this from £40 to £151 a month. The money would have to come from his personal independence payment (Pip) and would take up a third of that budget. He said that would leave him choosing between “heating and eating” and it would affect his budget so much that he will have to consider putting down his 14-year-old dog, Megan, which he said would be “beyond awful”.

Pip is supposed to help people with illness, disabilities and mental health conditions maintain norms of everyday life. He said clawing this money back was “just ridiculous”.

“I simply can’t afford it,” Jones said. “This extortionate demand represents 20% of my monthly income from benefits. It has to be outright unfair and a national scandal that the Department for Work and Pensions awards us Pip with one hand, and the county council takes up to a third of it away with the other.

“I would have to cut my food budget drastically and might end up having to go to a food bank,” he said. “I have a dog and if I was going to try and budget for the amount of money [I have left] the dog would have to go.”

He said Megan had been a “lifeline to sanity” during the pandemic and had been “incredibly helpful for my mental health”.

“This [demand] has caused me incredible distress and anxiety,” he said. “There are people in an even more vulnerable position than me suffering with mental health illnesses, autism and learning disabilities and it must be extremely difficult for them to cope with this. It’s really heartless and cruel. I don’t think it’s going to raise an awful lot for the county council but it’s a vast amount for us.”

The council has said central government cuts precipitated the increased charges and it has asked “people to contact us if they will find it difficult to pay”.

https://www.theguardian.com/society/2021/apr/08/english-councils-huge-extra-care-bills-disabled-mentally-ill-adults

Charities urge clarity over who qualifies for next UK vaccine wave

Many vulnerable people who expected to be on ‘at risk’ list next in line for jab say they have been left out

By Sarah Marsh, Frances Ryan and Dan Sabbagh

Thousands of vulnerable people in the UK are at risk of being overlooked for vaccination amid confusion over who is to be included in the crucial next wave of the programme, a Guardian analysis has found.

People with a range of conditions said they had been told repeatedly they were at a heightened risk from coronavirus, with some even being told to shield, only to discover they were being left out of the “at risk” group next in line for a jab.

Charities called for clarity on who should be included, urging ministers to err on the side of caution by casting the net as widely as possible to avoid needless Covid deaths.

The UK is poised to meet its target of vaccinating the first four priority groups by Monday. So far the programme has focused on elderly people, care home residents and staff, people who are clinically extremely vulnerable, and frontline health and social care workers. By Friday a total of 14 million had received at least one dose, approaching the target of 15 million.

The next stage involves priority groups five and six – people aged 65 and over, and those aged 16-64 who are at high risk of serious illness or death from Covid-19 because of serious underlying health conditions.

Group six contains an estimated 7.3 million people and is by far the largest of the remaining priority groups. But confusion surrounds the question of who qualifies.

Many who expected to be on the list compiled by the Joint Committee on Vaccination and Immunisation (JCVI) are not, including people with ME, spinal cord injuries, forms of asthma, mild to moderate learning disabilities and rare physical disabilities.

GPs can add people to the priority list at their own discretion, but some appear to be unaware this is the case, prompting fears patients could be left at the mercy of their relationship with their doctor.

The Guardian has heard from some disabled people who have asked their doctor to be given priority status only to be turned down, while one reported that their GP did not know it was possible.

Charities have told the Guardian they are now providing worried clients with a template letter to give to their GP to help them lobby them with evidence about why they warrant a vaccine.

Data released by the ONS on Thursday showed that six out of every 10 people who died with coronavirus in England before 20 November last year had a disability – 30,296 out of 50,888.

Sonya Chowdhury, the chief executive of Action for ME, said she was shocked that the condition – which causes extreme fatigue among other symptoms – had been left out of category 6, and around half of all the emails and phone calls the organisation was receiving were about the vaccine programme. Even mild viruses can cause flare-ups and relapses in people with ME, confining them to their bed for months or even years.

Dan Scorer, the head of policy at the learning disability charity Mencap, said: “People with a learning disability in England are dying from Covid at over six times the rate of the general population – yet shockingly not everyone with a learning disability is being prioritised for the vaccine.

“Currently people with a severe or profound learning disability are in group 6 on the vaccine priority list, and adults with Down’s syndrome are in group 4. Yet people with a mild or moderate learning disability are not being prioritised, ​unless due to their age or clinical vulnerability. This is despite data showing that 65% of those with a learning disability who died from Covid in the first wave in England had a mild or moderate learning disability.”

Nik Hartley, the chief executive of the Spinal Injuries Association, said people served by his charity should without question be considered a vaccination priority. “Those with tetraplegia and high-level paraplegia will have compromised respiratory function and can have a suppressed immune system, which means they are more likely to require acute care if they contract Covid-19,” he said.

Many people with asthma are confused about when they will get the vaccine and what priority group they fall into. Sarah Woolnough, the chief executive of Asthma UK and the British Lung Foundation, said: “We’ve been urging the government for some months to provide clarity on this as we know it’s a worrying time for lots of people and we now have more information.”

She said there was evidence that people with well-controlled asthma that is not severe are not at higher risk of dying from Covid-19, which means some people will not be included in category six.

“There is an ongoing discussion about who with asthma will be included in category six, and our understanding is that those with asthma that is difficult to control might be included. As it may be hard to accurately identify everyone in this group, the government should err on the side of caution in decision-making and cast its net wide when making decisions about definitions to ensure that people with asthma who are at risk won’t be missed,” she said.

Concern has also been raised among people with rarer conditions. Shona, 23, from St Albans, in the commuter belt north of London, said: “I have a rare condition, Marfan syndrome, that doesn’t seem to fit any neat boxes, and so when I was left off the [vaccine priority] list it wasn’t a total surprise. I’m currently on the waiting list for major open-heart surgery, and every minor illness (like tonsillitis) I’ve had in recent years has left me in hospital, often via ambulance.”

There has been widespread criticism of the shielding scheme during the pandemic. A report this week by the National Audit Office on the shielding programme highlighted significant failings at the start of the pandemic in identifying people who were clinically extremely vulnerable. A dearth of official data meant many people who were at high risk were told not to shield, while others who were not clinically extremely vulnerable were wrongly told to shield.

Prof Wei Shen Lim, the Covid chair for JCVI, said: “The JCVI’s advice on Covid-19 vaccine prioritisation was developed with the aim of preventing as many deaths as possible. As the single greatest risk of death from Covid-19 is older age, prioritisation is primarily based on age. It is estimated that vaccinating everyone in the priority groups would prevent around 99% of deaths from Covid-19.”

https://www.theguardian.com/society/2021/feb/12/charities-urge-clarity-over-who-qualifies-for-next-uk-vaccine-wave

 

Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities

Vulnerable people have encountered ‘shocking discrimination’ during pandemic, says Mencap charity

by James Tapper

People with learning disabilities have been given do not resuscitate orders during the second wave of the pandemic, in spite of widespread condemnation of the practice last year and an urgent investigation by the care watchdog.

Mencap said it had received reports in January from people with learning disabilities that they had been told they would not be resuscitated if they were taken ill with Covid-19.

The Care Quality Commission said in December that inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices had caused potentially avoidable deaths last year.

DNACPRs are usually made for people who are too frail to benefit from CPR, but Mencap said some seem to have been issued for people simply because they had a learning disability. The CQC is due to publish a report on the practice within weeks.

The disclosure comes as campaigners put growing pressure on ministers to reconsider a decision not to give people with learning disabilities priority for vaccinations. There is growing evidence that even those with a mild disability are more likely to die if they contract the coronavirus.

Although some people with learning disabilities such as Down’s syndrome were in one of four groups set by the Joint Committee on Vaccination and Immunisation (JCVI) which the government promised would be offered the vaccine by tomorrow, many were classified lower categories of need and are still waiting.

NHS figures released last week show that in the five weeks since the third lockdown began, Covid-19 accounted for 65% of deaths of people with learning disabilities. Figures from the Office for National Statistics show that the rate for the general population was 39%, although the two statistics are drawn from different measurements.

Younger people with learning disabilities aged 18 to 34 are 30 times more likely to die of Covid than others the same age, according to Public Health England.

Edel Harris, Mencap’s chief executive, said: “Throughout the pandemic many people with a learning disability have faced shocking discrimination and obstacles to accessing healthcare, with inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices put on their files and cuts made to their social care support.

“It’s unacceptable that within a group of people hit so hard by the pandemic, and who even before Covid died on average over 20 years younger than the general population, many are left feeling scared and wondering why they have been left out.

“The JCVI and government must act now to help save the lives of some of society’s most vulnerable people by urgently prioritising all people with a learning disability for the vaccine.”

More than 14m people have received a first vaccine dose so far, and care providers who spoke to the Observer said many people with learning disabilities had been vaccinated in the last week. But some are still waiting. One woman from the West Midlands who has a rare form of Down’s syndrome told the Observer she had not yet been given a date.

“It’s really frustrating – it’s been a fight and it shouldn’t have been a fight,” she said. Her condition means she is in category four – people who are clinically extremely vulnerable – but her GP did not have details of her condition on record – a common problem, according to Mencap.

“I had to call them lots of times,” she said. The practice accepted last week that she needed to be vaccinated, she said, but she was still waiting. “For people in a similar situation to me, they won’t have been badgering them as much as me.”

A lack of badgering is part of the reason why people with learning disabilities may be more likely to die from Covid-19 than the rest of the population, according to Dr Keri-Michèle Lodge, a consultant in learning disability psychiatry in Leeds.

“Doctors often don’t understand that someone with learning disabilities may not be able to communicate their symptoms,” she said. “Carers are sometimes not listened to – you might notice something is wrong, but that is often written off as part of their behaviour.

“People with learning disabilities already get a raw deal from the health services. Fewer than two in five people with a learning disability live until they are 65.”

An analysis by the Office for National Statistics last week showed that six in 10 Covid deaths were of people with a disability.

“The biggest factor associated with the increased rate of death from their analysis was living in care homes or residential settings,” Lodge said. “They prioritised people in care homes for vaccinations, but that was only for older adults. They completely forgot about people with learning disabilities in a really similar setting. I don’t know if the government were blindsided or just neglectful.”

Professor Martin Green OBE, Care England’s chief executive, said: “As the largest representative body for independent providers for adult social care, Care England remains concerned that the government has not given individuals with a learning disability a higher level of priority for the Covid vaccine.

“We urge the government to remove the arbitrary distinction between prioritising those with a severe or profound learning disability and those with a mild or moderate learning disability, and prioritise all those with a learning disability in priority group four. People with learning disabilities must not be overlooked at any time.”

https://www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties

Coronavirus: Return of benefit sanctions in middle of pandemic ‘is barbaric’

By John Pring

Disabled campaigners have described the government’s decision to reintroduce benefit sanctions – in the middle of a pandemic – as “barbaric” and “life threatening”.

The decision meant an end to the three-month suspension of benefit sanctions and conditionality* in England, Scotland and Wales, which had been introduced in March as part of the COVID-19 lockdown measures.

Jobcentres will start re-opening this week in England, but not in Scotland and Wales, where claimants will only receive services online and by phone.

This means that some claimants in England will now begin to have face-to-face discussions with work coaches in jobcentres.

But there has been little information on exactly how these steps will work and how they will affect disabled and other claimants.

Work and pensions secretary Therese Coffey said restoring conditionality and the threat of benefit sanctions was “an essential part of the contract to help people start to reconsider what vacancies there are”.

But it came as the government continued to ease the lockdown that has been in place across England since March, while also imposing a local lockdown in Leicester after a spike of infections.

Millions of disabled people – many of them on out-of-work benefits and now potentially subject to the threat of sanctions – are still shielding from the virus.

Yesterday, work and pensions ministers also removed a crucial line from guidance for claimants of universal credit (UC) that previously assured them: “You will not get a sanction if you cannot keep to your Claimant Commitment because of coronavirus (COVID-19).”

This suggests that UC claimants will no longer be able to use the fact that they are shielding, or have COVID-19 symptoms, as a reason for breaching their claimant commitment (the agreement that sets out what they have to do to continue to receive UC).

DWP refused to comment on the removal of this line, or even to confirm that sanctions would now apply again to all claimants previously at risk of having one imposed, including those in the work-related activity group of employment and support allowance (and the equivalent universal credit group).

Instead, the department attempted to persuade journalists, including Disability News Service (DNS), that the move to restore sanctions was “compassionate” and “understanding”, that sanctions would not be imposed “for no good reason”, and that the re-imposition was “rooted in a new normal” and their use would be “more compassionate” and “reasonable” than pre-pandemic.

The decision to re-impose sanctions and conditionality from 1 July after a three-month pause was greeted with anger and disbelief by disabled activists.

Disabled People Against Cuts (DPAC) held an online action yesterday to protest at the re-imposition.

DPAC said in a statement: “Claimants have been left both anxious and uncertain.

“There is now overwhelming evidence of both the serious harm that the sanctions regime inflicts on the most disadvantaged members of society and the fact that sanctions are punitive and counter-productive to the aim of getting people off benefits and into work.”

It also appealed to disabled people and allies to join the new Scrap Universal Credit Alliance.

Pam Duncan-Glancy, a disabled Labour parliamentary candidate at the last general election, said the decision to reintroduce sanctions was “barbaric”.

She said on Twitter: “The standard to which I hold the Gov in this regard is low. Even by that standard, this is off the scale.

“Brutal at the best of times, but in these times this policy on sanctions is a death sentence.”

Kerena Marchant, a Deaf campaigner who stood for Labour at the last general election, said in a video that restarting sanctions would place Deaf and disabled people “in an impossible situation”.

She said: “They will have to choose between the life-threatening risk of the hostile environment of the DWP and that of the pandemic. They both are life-threatening.

“We’ve already had DWP suicides and deaths and this could lead to more.”

Paula Peters, a member of DPAC’s national steering group, described in a video some of the personal testimonies of disabled people who have had universal credit sanctions imposed on them.

One woman, who was unsuccessful in four job interviews, was sanctioned because DWP said she was not happy enough, even though she had depression and anxiety.

Another woman was told by the jobcentre not to mention that she was disabled because such a term was “political”.

This woman was also accused of lying about her seizures, until she had a seizure in the jobcentre.

She was still sanctioned for three months and had to rely on friends and family for food, said Peters.

Another disabled activist, Andy Mitchell, said in a video to support the action: “We are still in the middle of a pandemic, we still have people shielding, we still have people self-isolating, we still have families home-schooling their children because they cannot go to school.

“We know that hundreds of thousands of people are about to lose their jobs, we know that the homeless are about to be released from hotels because the contracts have ended and the money has run out. And we have this situation in Leicester.

“We are still in the middle of a pandemic, yet DWP have dug in their heels and refused to extend the ban. This is wrong.”

Debbie Abrahams, Labour’s former shadow work and pensions secretary, also spoke in support of DPAC’s campaign, saying: “We know sanctions don’t work. In fact they can make things worse, dehumanising people and creating mental health problems.”

Ian Blackford, the SNP leader at Westminster, told Boris Johnson at prime minister’s questions yesterday that the decision was “heartless”, “cruel” and “unnecessary”.

Johnson asked Blackford “to think that he may be mistaken”.

Disability Rights UK said this week that the decision to reintroduce conditionality and sanctions was “appalling” and “must be reversed”.

Ken Butler, DR UK’s welfare rights and policy adviser, said: “Conditionality and sanctions actively harmed disabled people before both were lifted in March.

“To reintroduce them with no discussion, in the environment of an economic recession, with millions more universal credit claimants and amid a viral pandemic, shows a scant regard for the welfare and safety of disabled people.”

He also pointed out that the PCS union had warned that reopening jobcentres so soon “could create a perfect storm as staff and customers are faced with lack of social distancing, inadequate personal protective equipment and the real risk of COVID-19 being brought into workplaces”.

Coffey told MPs this week: “It is important that as the jobcentres fully reopen this week, we reinstate the need for a claimant commitment.

“It is an essential part of the contract to help people start to reconsider what vacancies there are, but I know that I can trust the work coaches and jobcentre managers, who are empowered to act proactively with people.”

A DWP spokesperson added: “We’ve been there for those who have lost jobs or have reduced hours in this pandemic, promptly processing new claims and getting money into the accounts of those in urgent need within days.

“Now our focus is rightly switching to getting Britain back into work.

“From July, people can make an appointment with their work coach if they can’t get the help they want online or over the phone and work coaches will be calling all claimants to help them get ready for the world of work.”

*Under conditionality, the rules claimants have to meet in order to avoid losing some or all of their out-of-work benefits through sanctions can include pledging to carry out a certain number of hours looking for and applying for jobs, networking, updating a CV, or attending training

Coronavirus: Return of benefit sanctions in middle of pandemic ‘is barbaric’

UK coronavirus rules relaxed for people with autism and learning disabilities

Policy updated after lawyers challenge ‘discriminatory’ lockdown measures

People with learning disabilities or autism can leave the house for exercise more than once a day and can travel outside of their local area under current lockdown measures, the government has said.

The guidance, which had previously stated that non-essential workers should only leave their homes once a day for exercise or to shop for basic necessities, was amended on Wednesday.

The updated advice reads: “If you (or a person in your care) have a specific health condition that requires you to leave the home to maintain your health – including if that involves travel beyond your local area – then you can do so.

“This could, for example, include where individuals with learning disabilities or autism require specific exercise in an open space two or three times each day – ideally in line with a care plan agreed with a medical professional.”

Although those with autism and mental health conditions are advised to limit their travel, and stay as close to their local area as possible, carers and support workers who do not live in their household can accompany them.

The change comes after lawyers from Bindmans LLP and 39 Essex Chambers were asked for help by two families with children on the autistic spectrum.

Bindmans said one of the children, whose conditions mean it was necessary for them to leave the house more than once a day for their wellbeing, was deliberately taken to a quiet location outside of their local area because of their particular needs.

The firms argued that the “inflexible policy”, which also says people should stay two metres apart from anyone outside of their household, disproportionately impacted those with certain health conditions and was “therefore unlawful and discriminatory”.

After the amendment was made to the guidance, one of the affected families said they were “delighted” they could support their son’s needs “without breaking the rules”.

A spokesperson for the Cabinet Office said the most important action the public could take during the pandemic was to stay home to prevent the spread of Covid-19.

But, it added: “We understand that this will be more difficult for some, that is why we clarified the guidance regarding the needs of those with specific health conditions such as learning disabilities or autism.”

https://www.theguardian.com/world/2020/apr/14/uk-coronavirus-rules-autism-learning-disabilities-lockdown

Welfare surveillance system violates human rights, Dutch court rules

Government told to halt use of AI to detect fraud in decision hailed by privacy campaigners

A Dutch court has ordered the immediate halt of an automated surveillance system for detecting welfare fraud because it violates human rights, in a judgment likely to resonate well beyond the Netherlands.

The case was seen as an important legal challenge to the controversial but growing use by governments around the world of artificial intelligence (AI) and risk modelling in administering welfare benefits and other core services.

Campaigners say such “digital welfare states” – developed often without consultation, and operated secretively and without adequate oversight – amount to spying on the poor, breaching privacy and human rights norms and unfairly penalising the most vulnerable.

The UN special rapporteur on extreme poverty and human rights, Philip Alston, applauded the verdict and said it was “a clear victory for all those who are justifiably concerned about the serious threats digital welfare systems pose for human rights”.

The decision “sets a strong legal precedent for other courts to follow”, he added. “This is one of the first times a court anywhere has stopped the use of digital technologies and abundant digital information by welfare authorities on human rights grounds.”

The verdict will be watched closely by welfare rights campaigners in the UK, where the government is accelerating the development of robots in the benefits system in a digitisation drive that vulnerable claimants fear could plunge them further into hunger and debt.

A Guardian investigation in October found the Department for Work and Pensions (DWP) had increased spending to about £8m a year on a specialist “intelligent automation garage” where computer scientists were developing more than 100 welfare robots, deep learning and intelligent automation for use in the welfare system.

The Dutch government’s risk indication system (SyRI) is a risk calculation model developed over the past decade by the social affairs and employment ministry to predict the likelihood of an individual committing benefit or tax fraud or violating labour laws.

Deployed primarily in low-income neighbourhoods, it gathers government data previously held in separate silos, such as employment, personal debt and benefit records, and education and housing histories, then analyses it using a secret algorithm to identify which individuals might be at higher risk of committing benefit fraud.

A broad coalition of privacy and welfare rights groups, backed by the largest Dutch trade union, argued that poor neighbourhoods and their inhabitants were being spied on digitally without any concrete suspicion of individual wrongdoing. SyRI was disproportionately targeting poorer citizens, they said, violating human rights norms.

The court ruled that the SyRI legislation contained insufficient safeguards against privacy intrusions and criticised a “serious lack of transparency” about how it worked. It concluded in its ruling that, in the absence of more information, the system may, in targeting poor neighbourhoods, amount to discrimination on the basis of socioeconomic or migrant status.

The system did not pass the test required by the European convention on human rights of a “fair balance” between its objectives, namely to prevent and combat fraud in the interest of economic wellbeing, and the violation of privacy that its use entailed, the court added, declaring the legislation was therefore unlawful. The Dutch government can appeal against the decision.

Christiaan van Veen, director of the digital welfare state and human rights project at New York University School of Law, said it was “important to underline that SyRI is not a unique system; many other governments are experimenting with automated decision-making in the welfare state”.

Van Veen cited Australia and the UK as countries where such concerns were particularly acute. “This strong ruling will set a strong precedent globally that will encourage activists in other countries to challenge their governments,” he said.

Alston predicted the judgment would be “a wake-up call for politicians and others, not just in the Netherlands”. The special rapporteur presented a report to the UN general assembly in October on the emergence of the “digital welfare state” in countries around the globe, warning of the need “to alter course significantly and rapidly to avoid stumbling, zombie-like, into a digital welfare dystopia”.

In the UK, as well as contracts with the outsourcing multinationals IBM, Tata Consultancy and Capgemini, the DWP is also working with UiPath, a New York-based company co-founded by Daniel Dines, the world’s first “bot billionaire”, who last month said: “I want a robot for every person.”

His software is being deployed in an effort to introduce machine learning to check benefit claims, which suggests welfare computers will autonomously learn and alter the way they make decisions with minimum human intervention.

https://www.theguardian.com/technology/2020/feb/05/welfare-surveillance-system-violates-human-rights-dutch-court-rules

Blue badge permits: Councils ‘must provide enough spaces’

Councils must make sure there are enough disabled parking spaces to cope with the extra demand a blue badge scheme expansion will bring, the charity Scope has said.

As of Friday, people with hidden disabilities in England are now also eligible to apply for blue badges.

Scope welcomed the move but said if spaces are scarce, the badges “are not worth the paper they’re printed on”.

The Local Government Association said councils regularly review parking.

Currently, about 2.35 million people with physical disabilities in England have a blue badge.

Blue badge holders are allowed to park in spaces which might be restricted to other drivers, for example parking on yellow lines for up to three hours, for free in pay and display bays, or in spaces designated “disabled”.

Under Friday’s change – which is the biggest shake-up of the blue badge scheme since it was introduced nearly 50 years ago – people with hidden disabilities, such as dementia, autism or anxiety disorders will also be eligible to apply for the permits.

However, not everyone with hidden disabilities will quality for a badge, as it will still be up to local councils to decide if an applicant meets the eligibility criteria.

The change has been widely welcomed by charities, including the head of the National Autistic Society, who called it a “huge relief”.

“A blue badge can be life changing,” said Tim Nicholls, from the charity, who said many autistic people are often so anxious they may find it hard to leave the house.

Ceri Smith, policy and campaigns manager at Scope, also welcomed the move, saying: “Today’s change should make a real difference for many disabled people with invisible impairments and conditions who have been shut out of the blue badge scheme to date.”

However she added: “But in order for it to work, it’s vital that councils issue blue badges to people who are newly eligible to apply.

“More also needs to be done by councils to ensure that there are enough allocated blue badge spaces near shops and amenities to meet increasing demand.”

Earlier this week, Scope responded to figures from company Confused.com claiming many UK councils in charge of parking provisions have not planned to extend their number of blue badge spaces.

Ms Smith said: “With spaces already scarce, it’s extremely worrying that so few councils have prepared for the expansion of the blue badge scheme, despite knowing it was coming for months.

Charity Disabled Motoring UK, which campaigns for disabled drivers and blue badge holders, warned the increase in demand “may undermine the entire scheme and render it not fit for purpose”.

“The end result may mean it will let down the people it was originally intended to help as well as disabled people with hidden disabilities,” it said in a statement.

“The charity predicts that when the number of blue badge holders increases from August 2019, we will be contacted more and more by disabled people who find their blue badge completely meaningless as they will be unable to find adequate parking because it will be so oversubscribed.

“We implore all local authorities and private parking operators to take this change seriously, review their disabled parking provision and stress the importance that they all enforce disabled parking properly so that disabled bays are kept free only for genuine blue badge holders.”

‘Not just councils’
Last year, 859,000 blue badge permits were issued in England, a decrease of 3.2% compared to the year before.

Earlier this year, Essex County Councillor John Spence said the new rules could lead to a 20% increase in the number of applications in Essex – putting further pressure on stretched disabled parking provision.

The Department of Transport, launching the expansion of the scheme on Friday, said councils will get £1.7m in the first year of the programme, to help with the expected spike in applications.

But it added that councils may need to review parking provision to increase the number of spaces available.

In a statement, the Local Government Association – which represents councils in England and Wales – said the availability of spaces for blue badge holders was not just down to councils as there was also “significant private provision of parking”.

“Councils know that blue badges are a vital lifeline for disabled people which help them get out and about to visit shops or family and friends and many have already been approving badges for people with non-physical disabilities,” the LGA said in a statement.

“Councils regularly review parking provision in their areas, including both public and private, in order to help meet the needs of the public, including those with blue badges.

“Overall provision will depend on private operators, council resources as well as competing demand for road space and public land.”

https://www.bbc.co.uk/news/uk-49521867

Work until 75? Many people won’t even live that long

Iain Duncan Smith’s plan to push the pensions burden from the state on to the individual ignores class differences in life expectancy

by Frances Ryan

An influential conservative thinktank – fronted by the former work and pensions secretary, Iain Duncan Smith – has proposed the state pension age should rise to 75 over the next 16 years. If the Centre for Social Justice (CSJ) had its way, the retirement age would go up to 70 just nine years from now, as the change is phased in.

It’s important to stress that it’s not yet government policy, but given the CSJ’s influence, it’s not unreasonable to imagine a future with dramatically delayed retirement. It’s a demographic reality that the state is having to meet higher pension costs: the pensions bill rose from £17bn in 1989 to £92bn today, and will cost £20bn more by 2023 as the population ages. The government already plans to increase the pension age to 67 in 2028 and then 68 by 2046, leaving us working well into our twilight years. At the same time, nearly 4 million women have already been forced to wait up to an extra six years to get their pensions after changes to bring women’s retirement age into line with men’s.

The CSJ’s idea of raising the pension age further received glowing coverage in sections of the rightwing press, with the Telegraph marvelling how it would “boost the economy” by £182bn and stave off the “escalating cost” of state pensions. As Duncan Smith tweeted this week: “Removing barriers for older people to working longer has the potential to improve health and wellbeing, increase retirement savings and ensure the full functioning of public services for all.” It’s a dystopian vision of life, in which capitalism tells workers who have already grafted for 40 years that working a five-day week through their 70s is in fact the path to a healthy body and society.

The “work pays” mantra endorsed by Duncan Smith for pensioners has already been adopted by the Department for Work and Pensions in relation to disabled people, where pushing the sick off out of work benefits and into the labour market has long been framed as a blessing.

Such policy is obtusely class blind. How long we live – and therefore how much time we have to enjoy retirement – varies across region and economic bracket. In Glasgow, boys born between 2015 and 2017 have a life expectancy of just 73.3 years – meaning under this plan, many would never reach pensionable age. Whether it’s even physically possible to do our job in old age varies along class lines; it’s a considerably different experience to be a labourer at 75 than a lecturer. Health inequality is also a stark factor; a woman living in the most deprived 10% of England, for example, has a life expectancy of 78.7 years, but only 52 of those years are in good health. Any rise in the pensionable age would force the poorest to work through years of illness and disability, while only the wealthy have the luxury to retire in good health.

The pressing issue is not that pensions are too generous – but that they are increasingly hard to get, and far too small. British basic pensions are uniquely low – 16% of average earnings – compared with those of other developed nations, and require a long contribution period (often penalising women who take time off for caring responsibilities). The existing system leaves many older people struggling to get by; research this week shows the proportion of elderly people living in severe poverty in the UK is five times what it was in 1986, the largest increase among western European countries.

The safety net of the state pension is even more crucial in an era in which private pensions are increasingly out of reach. The rise in gig-economy working, as well as a squeeze on wages, means workplace pensions are unaffordable or nonexistent for many. It means three-quarters of the UK’s elderly will rely entirely on their state payments by 2036. So in the coming years, it’s going to be increasingly important to defend the principle of the state pension: that welfare is not a waste or a drain, but a civilised safety net that exists for the good of society, which we are all entitled to. Similarly, we must challenge the worldview in which our only value is as workers; as if time with our grandchildren is less meaningful than more contribution to the GDP.

There needs to be a genuine conversation about how to fund an ageing population, from pensions to social care, but any agenda to push the burden away from the state and further on to the individual is a dangerous one. Working lives should be shorter, and the reward for a life of effort bigger. “Work till you drop” is no way to live.

Frances Ryan is a Guardian columnist and author of Crippled: Austerity and the Demonisation of Disabled People

https://www.theguardian.com/commentisfree/2019/aug/22/work-75-iain-duncan-smith-pensions-life-expectancy

 

Boycott Workfare Universal Credit Welfare Rights Advice

Boycott Workfare is the only independent campaign to successfully oppose all forms of ”conditionality” aka sanctions and workfare, no ifs, buts, political strings attached or punches pulled.  We are now stepping up to take on Universal Credit. The Conditionality of Universal Credit aka sanctions and workfare have received little attention in reports by campaigns, charities, mainstream media and alternative media outlets. Among other things, we will be exposing the realities of Universal Credit and those profiting from it, and challenging the current narrative of the Westminster Village political class. It’s time to reshape the discussion on Universal Credit to make a difference from the perspective of ordinary working class people living in the real world – not out-of-touch politicians, journalists, so-called industry professionals or policy wonks.

As of today, we are launching a new practical anti-conditionality resistance campaign focused on Universal Credit – the biggest change to social security for over 60 years – and as a starting point, we are now offering free welfare rights Universal Credit-related advice to claimants. Anyone needing help with Universal Credit is invited to contact us via email info@boycottworkfare.org.  We will also offer face-to-face Universal Credit advice for claimants (currently only available in central London). These advice sessions are by appointment only, please email us to book one, along with brief details of the help you need in advance. The first of these sessions will be held on Saturday the 10th November from 14:00 -17:00, kindly hosted at MayDay Rooms, 88 Fleet St, London EC4Y 1DH.

The areas we can help claimants with include:

How to avoid claiming UC in Full Service areas if already receiving any so-called ‘legacy benefits’ (JSA, ESA, Housing Benefit, Child Tax Credit, working Tax Credit) or on becoming unemployed

The possibility of returning to ‘legacy benefits’ in ‘Gateway/Live UC Service’ areas and when to withdraw a claim for UC in Live Service areas to avoid losing money for part of a monthly ‘assessment period’ – though please note these options are now much more difficult due to the rapid roll-out of Full Service UC.

Complaining if you’ve lost income after being wrongly advised to transfer to UC

Re-claiming Council Tax Reduction when transferring to UC

Making sure a 2-week Housing Benefit ‘run-on’ has been received along with a housing element in the first assessment period after transferring to UC

Changing ‘claimant commitments’ and moving to different UC conditionality groups

Understanding work search and work availability conditions in the ‘all work related requirements group’

Varying the general 35-hour a week work search and availability rule

Limiting or suspending work search and work availability requirements for claimants otherwise subject to ‘all work related’ conditions

Checking whether sanctions (reduced entitlements for alleged failures to comply) have been applied to UC claims and effectively challenging sanctions

Dealing with the conditionality regimes imposed by private and voluntary sector contractors on behalf of the DWP

Challenging Workfare-related sanctions

Appealing fines and penalties imposed under UC

Making ‘Mandatory Reconsiderations’ about UC decisions

Appealing to First Tier tribunals about UC decisions

Asking for compensation via the complaints systems

Dealing with practical problems in claiming UC, payment delays and claim closures

Claiming UC Advances and appealing recovery rate decisions

Overcoming some of the UC barriers set up for EEA migrants concerning ‘right to reside’ rules

Overcoming some of the problems for sick and disabled claimants on UC

How to be assessed as having limited capability for work under UC – even if working

Checking errors in UC monthly calculations

Complaining about DWP and 3rd party deductions from UC for overpayments/debts

Alternative Payment Arrangements’ (APA’s)

Understanding the ‘conditionality earnings threshold’ of the employed and the ‘minimum income floor’ of the self-employed claiming UC

Understanding how the timing of changes (e.g. to rent) and an earnings cycle (e.g. weekly) affect UC payments

Possible ways of claiming UC while studying

Possible ways of claiming UC if under 18

Overcoming housing element UC restrictions for single renters under 22

Applying for Discretionary Housing Payments

Applying for Discretionary Council Tax Hardship payments

If your problem isn’t in the list above, still get in touch and we’ll see if we can help but please remember, we are currently only able to offer welfare rights advice about Universal Credit, Sanctions and Workfare.

Unlike state-funded welfare advice organisations like the Citizen’s Advice Bureau (CAB) with their ‘gagging clause’ restrictions, we will not hold back in our criticisms and demands for change while helping claimants. Much of the current focus of ‘UC support’ for claimants provided by charities and local authorities is on enforcing ”compliance”. Indeed, the DWP is paying CAB to concentrate on the IT skills needed to manage claims and on ‘budgeting skills’ – whilst the very same claimants are being plunged further into poverty via UC and ”conditionality”. CAB as an organisation has been paid off by the government to become a Universal Credit enforcer. Fail to attend a budgeting skills appointment with CAB? Then expect to be sanctioned as CAB will be contractually obliged to report it.

The only way to fight Universal Credit is to ensure that claimant’s know their rights and to actively challenge the narrative of punishment via conditionality. This is where you can come in to help. We plan to expand this part of our campaign and want you to get involved. We would love to hear from anyone and everyone interested in opposing conditionality and in working with claimants to help secure welfare rights. We’re especially keen on hearing from people with direct personal experience of the social security system. Why? We are claimants just like you, and the only way to win and get the welfare state you want is by coming together with like-minded people to actively expose and challenge the inadequacies of system we have. Work with us to help bring down Universal Credit.

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Boycott Workfare Universal Credit Welfare Rights Advice

Blue Badge (disabled parking) scheme eligibility consultation

Blue Badge (disabled parking) scheme eligibility consultation: summary of responses and outcome

Outcome to the Department for Transport’s consultation on proposals to extend Blue Badge eligibility to people with non-physical conditions.

PART 2 – EXECUTIVE SUMMARY

7. The Department was delighted to receive over 6300 responses to the
consultation and for the time that individuals and organisations took to provide
considered responses.
8. The Blue Badge scheme plays a vital role in allowing 2.4 million disabled
people in England to maintain their independence through special national
parking concessions. Blue Badges enable their holders to visit their families
and friends, and to access jobs, healthcare and leisure activities.
9. Although the Department considers that people with non-physical disabilities
are not excluded from receiving a Blue Badge, a problem arises from the
wording in the regulations providing eligibility for: “a permanent and
substantial disability which causes inability to walk or very considerable
difficulty in walking”. This does not specify whether the disability is physical or
non-physical – and can therefore be either. However there is confusion
around whether this only means physical difficulty in putting one foot in front
of the other or can include difficulties or challenges when walking, including
safety risks, which may arise from non-physical disabilities.
10. The Government wants to ensure that the rules and guidance are clear. It
wants to give parity of esteem to mental and physical health conditions. It
wants a scheme that is sustainable and works for all who are eligible for it,
whatever their disability. It wants it to be fair, consistent, inclusive and nondiscriminatory.
11. We are delighted that 89% of respondents are, in principle, in favour of our
proposals to amend the eligibility criteria. This support applies to all groups –
local authorities 71%, groups representing disabled people 84%, other
organisations 87% and individuals 89%. The main points raised were more to
do with implementation and consequential impacts. There was a call for
clarification of certain terms and the provision of clear guidance so that local
authorities can administer the scheme consistently. There were also concerns
about administration costs for local authorities, the impact on parking, and
abuse of badges.
12. Based on responses to the consultation, the Department continues to believe
that including people who have very considerable difficulty “when walking” as
opposed to just “walking” as now, will make it clear that people can qualify not
just because of a physical difficulty in walking but for non-physical reason

14. There is one area where the consultation has persuaded the Department to
change its proposals. We had proposed specifically including people who
‘cannot follow the route of a journey without another person’. However, it has
been made clear that this would mean including some people who need
another person with them, but can otherwise physically walk well and also
without psychological distress or challenging behaviours. The Department
believes that where people suffer very considerable psychological distress or
other difficulty when walking, or have a risk of very considerable harm to their
health or safety (including people with dementia), they should be eligible for a
badge. However, where the applicant would not go out alone and the
presence of another person negates the above mentioned issues, then we do
not believe badges should be issued. Needing another person on every
journey does not necessarily equate to needing to park nearby.

15. The primary aim of the scheme is to give disabled people who rely on car
travel but face particular challenges in getting from the car to their
destination, the ability to park close-by. The Department believes the badge
should directly benefit the individual; to ensure the sustainability of the
scheme we do not believe badges should be awarded in situations where the
carer is effectively the beneficiary.

16. For the same reason the Department intends to provide an automatic link to a
badge for people who score 10 points under the ‘Planning and following
journeys” activity of Personal Independence Payment (PIP) because cannot
undertake any journey without overwhelming psychological distress to the
claimant. We had proposed to link to 12 points under this activity, for people
who cannot follow the route of a familiar journey without another person, but
this would include people who do not have very considerable difficulty when
with another person and do not need to park close to where they are going. It
would not be sensible to award an automatic badge in this scenario.

This PIP criterion is not about needing to park a vehicle near to one’s destination. The
Department recognises that some people with significant challenges who
receive different levels of PIP may not have an automatic route to a badge.
This is because PIP and Blue Badge are different schemes that are not
completely compatible. However under our proposed new and expanded
eligibility criteria we are confident that people who experience very
considerable difficulties because of non-physical disabilities will now have a
clear route to a badge following assessment by their local authority.
17. Since 2012, the Government has required that where eligibility against the
walking criterion is not self-evident and an expert opinion is needed to help
determine eligibility, the local authority must use an Independent Mobility
Assessor who is independent of the applicant.
18. Following consultation, the Department continues to believe this role should
be widened. An independent mobility assessor may not be suitable for
certifying whether or not a person’s mental or cognitive disability has the
impacts that would meet the eligibility criteria. In the first place, the assessor
would not be assessing the physical ability to walk. So we believe the
assessor should become an eligibility assessor rather than a mobility
assessor. Furthermore, whereas a person with a physical disability may be
adequately assessed without the assessor having prior knowledge of their
disability, this may not be the case for a person with a non-physical disability.
Often such an assessment would require knowledge of the person’s
functional limitations when outdoors. We are therefore proposing to remove
the requirement for independence, but that does not mean a local authority
should not use an independent eligibility assessor where deemed
appropriate. This will allow the local authority to use a range of suitably
qualified healthcare professionals with specific expertise. The assessor role
does not have to be performed by a specific person – the authority will have
the flexibility to choose who they recognise as being suitable to provide an
expert opinion and it may vary from case to case, so long as the assessor
has relevant qualifications and experience to assess whether or not the
applicant has an enduring and substantial disability within the meaning set
out in the regulations. Respondents called for guidance as to who could fulfil
the assessor role and what qualifications they should have.
19. Respondents also called for clarity on a number of terms used across our
proposals, including “walk”, “journey” and “enduring” amongst others. The
Department will seek to define what these mean in guidance.

Blue Badge consultation: summary of responses and government response