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

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