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

Coronavirus: U-turn on critical care advice for NHS amid fears disabled people will be denied treatment

‘Many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that’

Shaun LinternHealth Correspondent @ShaunLintern
Wednesday 25 March 2020

Emergency guidance to help doctors decide who should get critical care during the coronavirus outbreak is being urgently re-written after a U-turn by a national health watchdog over fears it could mean disabled people are denied treatment.

The National Institute for Health and Care Excellence (NICE) had been threatened with legal action for telling doctors they should assess patients with learning disabilities, autism and other limiting conditions as scoring high for frailty.

But, following complaints from families and campaigners, NICE has said it will reissue its guidance.

NICE’s national guidance for the NHS, published on Friday, advised doctors on how to choose who gets life-saving intensive care treatment such as ventilation in the event of critical care services being overwhelmed during a surge of Covid-19 patients.

It included a frailty score that told hospitals to “assess all adults for frailty, irrespective of age and Covid-19 status” using a nine-point frailty scoring system with people “completely dependent for personal care, from whatever cause” scoring seven.

Anyone scoring higher than five was said to have uncertainty around the benefits of critical care.

Despite NICE accepting the guidance is wrong, at the time of publishing, it had yet to remove the incorrect documents from its website.

Peter Todd partner at Hodge, Jones and Allen solicitors, wrote to NICE on Tuesday demanding the guidance was withdrawn and that it made clear the original documents were wrong.

He told The Independent: “The guidance is still published on the NICE website and says that clinicians should comply with it. It would be better if they took it down and amended it before it was published again.

“You could be totally forgiven as a doctor for thinking this was still a valid policy, but they have already accepted they have made a major blunder.”

He explained that, as the guidance is currently worded, it meant young people with disabilities, autism or other mental health problems “have been classed as not to be offered critical care if required and that seems to be discriminatory and I don’t see how it can be justified. I think it is also a breach of the Human Rights Act.

“If they made clear doctors should not apply this frailty score to anyone who has autism or learning disabilities that would help, but it needs to be emblazoned on the policy. What I asked them to do was to unpublish the guidance and put a notice up to say it had been withdrawn and to consult first and republish it properly amended.”

Julie Newcombe, co-founder of Rightful Lives and whose son Jamie has autism said: “The original guidance was quite simply frightening. For a long time now, many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that.

“The hastily put together clarification is welcome, but I still wonder how that will translate on the ground given that attitudes in some areas are so entrenched.”

Edel Harris, chief executive of the learning disability charity Mencap, also criticised the guidance saying: “People with a learning disability and their families are deeply troubled that the latest NICE guidance for NHS intensive care doctors could result in patients with a learning disability not getting equal access to critical care and potentially dying avoidably.

“These guidelines suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently – all things that people with a learning disability often need support with – might not get intensive care treatment.”

He added it was vital NICE made clear patients should not be assessed for critical care based on their cognitive abilities.

A spokesperson for NICE told The Independent it was very aware of the concerns.

They added: “Our new Covid-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during this very difficult period of intense pressure.

“The guideline says that on admission to hospital, all adults should be assessed for frailty, and that other comorbidities and underlying health conditions are also taken into account.

“The frailty scoring system is not perfect, therefore we recommend that clinicians should take any decisions about care in conjunction with patients and their carers where possible.

“We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups, including those with learning disability or with stable long-term disabilities such as cerebral palsy, which we will reflect in an updated version of our guideline.”

https://www.independent.co.uk/news/health/coronavirus-nhs-treatment-disabled-autism-nice-covid-19-a9423441.html

Human rights watchdog issues legal challenge to Hancock on failed learning disability target

Equality and Human Rights Commission says government has breached rights of people with learning disabilities and autism due to failure to meet target to move them out of hospital

The UK human rights watchdog has mounted legal action against health and social care secretary Matt Hancock for failing to meet a target to reduce inpatient provision for people with learning disabilities and autism.

The Equality and Human Rights Commission’s (EHRC) action relates to the failure to meet the target, under the Transforming Care programme, to reduce inpatient provision for this group by 35% to 50% from 2015-2018, from 2,600  to 1,300-1,700.

As of December 2019, there were 2,185 people with learning disabilities or autism in inpatient provision, according to the latest figures published by NHS Digital.

The EHRC argues that by failing to meet the target, the Department of Health and Social Care had violated their rights to private and family life (Article 8) and to live free from inhuman or degrading treatment under the European Convention on Human Rights (ECHR).

The watchdog also said, that following discussions with the DHSC and NHS England, it was not satisfied a new target set out in last year’s NHS Long Term Plan, to reduce inpatient provision to half of 2015 levels by 2023-24, would be met.

Failed targets

The failure to meet the Transforming Care target followed government and sector leaders’ failure to deliver on a previous target set in 2012, following the Winterbourne View hospital scandal, in which a BBC Panorama investigation uncovered abuse by staff towards patients. That target was to eliminate the inappropriate use of hospital provision for people with learning disabilities and/or autism by June 2014.

Transforming Care has been designed to support people with learning disabilities or autism live ordinary lives out of hospital, through regional partnerships of NHS commissioners and local authorities investing in community-based accommodation and support that provided sustainable alternatives to inpatient care.

Multiple abuses

It has been a response to multiple reports of abuse by staff in inpatient settings – from Winterbourne View to last year’s exposure of mistreatment by BBC Panorama at Whorlton Hall hospital in Durham – as well as the widespread use of restraint, segregation and seclusion, which the Care Quality Commission is currently investigation on behalf of the DHSC.

Launching the action this week, EHRC chief executive Rebecca Hilsenrath said that “we cannot afford to miss more deadlines”.

“We cannot afford any more Winterbourne Views or Whorlton Halls, we cannot afford to risk further abuse being inflicted on even a single more person at the distressing and horrific levels we have seen.

“These are people who deserve our support and compassion, not abuse and brutality. Inhumane and degrading treatment in place of adequate healthcare cannot be the hallmark of our society, one scandal should have been one too many,” she said.

What happens next?

The EHRC has sent the DHSC a pre-action letter, to which it has 14 days to respond, though the watchdog has offered to suspend the process for three months if the department agrees to produce a timetabled action plan for achieving the target, including how it will overcome housing and workforce shortages.

It has also called for the immediate implementation of recommendations made on the issue by Parliament’s joint committee on human rights and an eight-point plan developed by campaign group Rightful Lives.

Rightful Lives eight-point plan

A review of every person with autism or learning disabilities in inpatient settings within 12 months with an agreed human-rights focused discharge plan.
The setting up of an independent body, led by people with learning disabilities or autism and their families and experts, which would have the power to drive the process of people moving from hospital to community.
Ring-fenced money for local authorities and the double funding of existing and new services if required.
Extra rights for families at all stages of the process, including an end to bans on visits.
Total transparency on costs and services, with the independent body issuing annual reports on this broken down by local authority.
Regional hit squads, made up families, lawyers and advisers, to assist people where there is the possibility of sectioning, to avoid this where possible.
Government to back legislation proposed by families to make community-based care the default for people with learning disabilities or autism.
An immediate end to the use of prone restraint and the adoption in NHS and private practice of the STOMP (stop the overmedication of people with learning disabilities) principles
A DHSC spokesperson said the department had received the pre-action letter from the EHRC and “will respond in due course”.

“We are committed to protecting the rights of everyone with a learning disability or autism, and are determined to continue reducing the number of people with these conditions in mental health hospitals.

“Abuse of any kind against patients in care is abhorrent and we take any allegations very seriously,” the spokesperson added.

‘Mismanaged and poorly-staffed institutions’
The British Association of Social Workers (BASW) said it agreed with the commission in that “there can never be another Winterbourne View or Whorlton Hall”.

“It is BASW’s position that people with complex needs will continue to be at risk in mismanaged and poorly staffed institutions until personalised alternatives are commissioned and provided within communities,” a spokesperson added.

Beverley Latania, co-chair of the Adult Principal Social Worker Network, said the Transforming Care programme was all about improving health and care services so that more individuals could live in the community, with the right support and close to home.

“However, it appears from recent high-profile cases that the support on offer is not good enough or inappropriate at times,” she said.

“The Adult PSW network welcomes action [that] ensures the rights of disabled individuals are upheld and that challenge is given to statutory services to improve how we deliver care, support, services to those in need, ensuring individuals wishes are taken into account at all times and that the right support is available at the right time with no delay.”

Human rights watchdog issues legal challenge to Hancock on failed learning disability target

Disabled and ill benefit claimants overcharged for care due to DWP error

Botched transfer had knock-on effect on councils’ financial assessments

Disabled and chronically ill benefit claimants who were left thousands of pounds out of pocket by a government error may have also been overcharged by their local authorities for social care, it has emerged.

At least 110,000 benefit claimants were underpaid an average of £5,000 following a botched overhaul of incapacity benefits which began in 2011, according to the latest figures.

The error occurred when Department for Work and Pensions (DWP) officials transferred people from older benefits on to the wrong kind of employment support allowance (ESA), meaning they missed out on premium payments they were eligible for.

The Guardian understands that, as a knock-on effect, the error will have skewed financial assessments many councils undertake to determine how much these claimants should have contributed towards their social care costs.

Pat Sawh, 65, has received a refund of more than £2,000 from Enfield council, in north London, which is believed to be the first to begin addressing this issue. Her sons Stephen, 31, and Kris, 29, both have autism, while Stephen also has epilepsy and multiple allergies.

“Both my sons still live at home and my husband and I are pensioners,” she said. “This extra money is helping them a lot – without it they could not do as much.”

Wendy Berry, 75, helps run a group for carers of learning disabled adults in Enfield and helped Sawh bring her case to the attention of the council.

“The problem with this issue is that councils probably do not even realise that the DWP error had an impact on social care charging. It is very complicated. We suspect that very few councils have really thought about it,” she said.

“Charging for social care is always a difficult area because it takes money from the disability benefits paid to the most vulnerable people, who need support to live in their own homes. To ensure people are paying what they are supposed to be paying is critical.”

Enfield council has since sent letters to other residents it suspects have been affected by this issue, which could number as many as 200 people, according documents seen by the Guardian.

In 2014, local authorities gained the power to introduce charges to recoup costs they incur from contracting care and support services. These charges are typically deducted from the benefits of people receiving social care.

Councils who charge must conduct financial assessments to ensure that they do not cause a person’s income to drop below the statutory minimum set by the Department of Health (pdf), although they also have discretion to have more generous charging rules.

Many, though not all, councils now charge for adult social care. Among the factors considered when calculating a person’s minimum income guarantee is whether they are receiving a premium, such as the enhanced disability premium.

Those who, like the Sawhs, missed out on premiums because the DWP transferred them on to the wrong type of ESA, may have had a reduced minimum income guarantee. As a result, they may have been overcharged for care by their local authority.

While the DWP has compensated those who missed out on premiums – to the tune of £5,000 on average – there appears to have been no government effort to address this knock-on effect.

Marsha de Cordova, the Labour MP and disability rights campaigner, said: “This is a scandal. It is a responsibility of the DWP to ensure that all local authorities are compensating or refunding any ill or disabled persons affected.

“I would worry for the ill and disabled people that have fallen into debt, destitution or poverty because of this error by the DWP.”

Kamran Mallick, Disability Rights UK’s chief executive, said: “Now that the DWP have finally recognised the thousands of disabled people who have been underpaid ESA, we urge local authorities to refund the overpaid charges for social care that have been paid by many of these same disabled people.

“It’s monstrous that many of the poorest people in our society have faced a double whammy of not receiving their full entitlement and being hit by social care overcharging.”

A DWP spokesperson said: “We have worked hard to ensure that all those entitled to ESA receive the benefits they are entitled to.

“We urge anyone who believes their social care payments may have been affected by this issue to contact their local council.”

Figures released last month revealed that 5,000 people died before they could be reimbursed for the DWP’s ESA error.

Enfield council was contacted for comment.

https://www.theguardian.com/society/2020/feb/15/disabled-and-ill-benefit-claimants-overcharged-for-care-due-to-dwp-error

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

How the benefits clampdown is undermining the GP’s role

GPs warn the system for assessing whether people are too sick to work is becoming increasingly stringent, leaving severely unwell patients without benefits. Hiba Mahamadi investigates.

‘I’ve got patients with Parkinson’s disease who can’t speak and rely on carers for feeding being told they’re fit for work.’

Birmingham GP Dr MayJay Ali is not alone. More than half of the 645 GPs responding to a Pulse survey last year said their patients had been refused welfare benefits despite their GP’s opinion that they were unable to work. In other words, GPs’ expert opinions about their patients’ health are being ignored.

Official statistics back them up. Pulse’s analysis of figures from the Department for Work and Pensions reveals 68% of employment support allowance (ESA) claimants assessed as ‘fit for work’ at their initial assessment later successfully had the decision overturned. To put this into context, in 2010, only 36% of decisions were overturned.

GPs warn a small but key change this year is the latest in a series of moves by the DWP that serve to undermine GPs’ role as advocates for their patients – and as experts on their health.

Under the system, people off work long term undergo a DWP-run ‘workplace capability assessment’ to determine their eligibility for ESA. If this deems a person ‘fit for work’, the GP is informed by letter.

This year, this letter was changed to inform GPs that, as the DWP has declared the patient fit for work, the GP ‘does not need to provide any more fit notes’.

Detrimental impact on patients

GPs strongly criticised the change, pointing out that they are the medical experts and their view on a patient’s fitness for work has more validity than that of a non-medically trained assessor. They said the move undermined their role.

It also affects the GP-patient relationship. As then RCGP chair Professor Helen Stokes-Lampard put it at the time: ‘GPs are not benefits assessors and must never be used as barriers for patients to receive benefits when they are entitled to them, as ultimately, this can have a detrimental impact on their health.’

Following the criticism, the DWP made amendments. But even the revised letter says: ‘We no longer need [fit notes] for your patient as they are fit for work.’ The concession, in small print, says GPs can offer fit notes if the patient ‘asks you for evidence for a reconsideration or appeal’.

Dr Ali says ministers are taking an increasingly heavy-handed approach to financial support for sick people: ‘I’ve noticed the [Government’s] assessments don’t seem as fair as they used to be. A lot of my patients whom I would expect to be eligible for benefits are told they’re fit for work.’

And the latest DWP figures show one in three of the 250,000 initial ESA work assessments between April 2018 and March 2019 resulted in claimants being deemed fit to work and refused benefits.

Croydon GP Dr Adnan Siddiqui says: ‘The Government is using assessments as though there is some sort of objective way to assess these things. I usually tell patients the whole set-up is geared to be superficial, to make them fail. But I say, if you persevere, you will most likely win.’

While some patients’ claims may not be genuine, the large proportion of successful appeals indicates a problem with initial DWP assessments. Of almost 2,000 appeals by patients with mental health and behavioural disorders, 72% saw the DWP decision overturned, while 68% of some 1,700 patients with musculoskeletal conditions also appealed successfully.

But often damage has already been done. GPs say appeals can take anywhere from a few weeks to 12 months, bringing anxiety and financial distress for patients. Those suffering from mental health conditions often experience a worsening of symptoms.

Dr Siddiqui says the DWP wrote to him about three patients, telling him they were suicidal after the assessment. This came as no surprise, he said, given that one patient compared the assessment centre to a ‘police interrogation cell’.

All this means extra work for GPs. Dr Ali says: ‘I have to write to the DWP to ask why my patients’ benefits are being stopped and explain why I think they need them. That’s not really my role.’

The DWP assessments also mean GPs come under pressure from patients. Matthew Johnson, a lecturer in politics at Lancaster University spoke to 11 GPs in 2017 about this issue as part of research on deprivation in North East England.

He says: ‘There is evidence to suggest GPs with concern for the wellbeing of their patients often feel a duty to support them as they navigate the benefits system.

‘This can lead to practices in which GPs prescribe medication recognised by assessors as an indicator of serious pain or ill health. This is apparent in the use of opioid painkillers, which ought to be of serious concern and would be avoided were the benefits system different’.

The DWP argues its assessments are carried out by health professionals given specific training in assessing people with a range of mental and physical health conditions. It says it works closely with its contractor to ensure assessments are of the ‘highest possible standard’.

http://www.pulsetoday.co.uk/views/analysis/how-the-benefits-clampdown-is-undermining-the-gps-role/20039773.article