As the Coronavirus Act is reviewed in parliament today amidst rising concern at the government's handling of the measures, an openDemocracy investigation highlights the devastating impact an under-discussed aspect of the Act has had on disabled people. The Act gives councils ongoing powers to reduce vital social care duties through a system known as “easements”, which allow councils to opt out of their duties under the 2014 Care Act if they met certain conditions. An umbrella group of 60 disability organisations, backed by over 30 peers, are urging the government to either amend the Coronavirus Act or at least “switch off the Care Act easement powers” and restore disabled people’s legal rights to adequate social care.

Through Freedom of Information requests and interviews with people receiving social care in their own homes, and their advocates, openDemocracy has uncovered:

Disabled people account for nearly two thirds of the deaths caused by COVID-19 during the first peak. Care homes and the plight of the elderly has been in the spotlight during the pandemic. But the many disabled people of all ages who receive social care in their own home often appear to have been forgotten. As parts of the UK lock down once more, a large number of people living with disabilities, whether also ‘shielding’ or not, are struggling to cope with the devastating effects of the pandemic on their day to day lives.

This month the government launched a new adult social care winter plan, focusing on safety in care homes. The Association of Directors of Adult Social Care president James Bullion called the plan a “good start” but added that more has to be done to ensure that the “significant majority of people who receive care and support in their own home” are “similarly protected.”

Breaking point

Julie and her husband both have autism, and have been trying to live independently in their home in Rotherham.

Before the pandemic, the couple used to have a husband and wife’s care package, which was comprised of 42 hours a week of care, paid for with direct payments provided by the council. Julie and her husband used this package of means-tested payments to hire carers to help with day to day tasks, such as liaising with their landlord and doctors, or making meal plans.

Yet in the midst of the pandemic, Julie and her husband’s three personal assistants suddenly left, which led to their care package being reviewed. Following two reassessments, their care has now been reduced to just one telephone call a day. This is in spite of their care needs increasing: at the end of May, Julie had a fall and injured her lower back and hip, meaning she can no longer even walk to the living room. Life has been getting “harder and harder because we have so little support,” she says.

Julie and her husband are not alone in seeing their care packages cut during COVID - a recent Mencap survey found that 7 out of 10 people living with learning disabilities have had their social care reduced during lockdown, leaving many at breaking point.

One way this has happened is through controversial “easements”. March’s Coronavirus Act introduced a legal loophole to allow councils to apply for “easements” to allow suspend their statutory duties under the Care Act 2014, which otherwise requires councils to assess a person’s needs and make care plans to meet them. During this period, only eight local authorities actually implemented easements under the Care Act. But as the Coronavirus Act, the renewal of which is being discussed in parliament today, currently stands, councils could continue to have the option of taking up those powers during the winter months.

This month, in advance of the debate, a group of 60 organisations including Disability Rights UK, Inclusion London, Liberty and Mind signed an open statement asking the government to restore disabled people’s rights, claiming that they: "have caused confusion and harm when operated and led to reductions in care, support, safeguards and education for disabled adults and children."

Sam, a wheelchair user with autism from King’s Norton in Birmingham, was one of those thought to be affected by the easement policy. Sam, who uses the pronouns they/them, was admitted to hospital in April 2020 due to “failure to cope following an ankle injury. They asked their social worker over a crackly Skype conversation if their direct payments could be reinstated as part of a return to their personalised care plan they’d previously had. However, “I was simply told that the Coronavirus means no more payments.”

Like Julie, Sam found themself without the basic support they needed during a global pandemic: “Several times in the last month I've been left without care, having to call out an ambulance just to take my meds or to help me off the floor when I've tried to get into bed without help.”

Of easements and excuses

Government guidance states that a council can apply to take up easements ‘when the workforce is significantly depleted, or demand on social care increased to an extent that it is no longer reasonably practicable for it to comply with its Care Act duties’.

But five out of the eight local authorities taking up easements during the first wave had less than 1% of their workforce out sick, figures obtained by openDemocracy under Freedom of Information rights reveal. Contrast Surrey, one of the wealthiest authorities in the country, which had 20% of their workforce off sick due to COVID-19 but didn’t trigger easements. The suspicion must be that workforce absence was being used by cash-strapped councils as an excuse to cut care – and that it could be again.

Rosemary Sexton, a Green Party councillor in Solihull, feels that those councils who implemented their COVID right to take “easements” from their Care Act duties during the first wave, like Solihull, were at least acting with “more transparency” than those who simply cut care without invoking this specific legal right.

“Some councils are cutting back on services but because they’re not using easements there’s no safeguards in place, whereas Solihull is one that has really done it by the book...the suspicion is that other councils must be using similar measures, but not regarding them as easements.”

Indeed, Mencap told openDemocracy that “the cuts that people are seeing during lockdown are widespread, which doesn’t fully match with the amount of local authorities using the easements.”

Reduced spend

In fact, Freedom of Information requests I sent to all local authorities in England show that of the 71 councils that responded, just over half reduced their spending on direct payments during peak pandemic months of March and April, some by as much as 37%, even as other councils increased it.

This is in spite of government guidance which clearly states, “There is nothing in the Coronavirus Act or the Care Act easements guidance which suggests that direct payments could be stopped – instead there should be greater levels of flexibility, to ensure you continue to receive the care and support you need to keep safe”.

Similarly over half of councils who responded fully to Freedom of Information requests said they had reduced the amount of assessments carried out, meaning limited opportunities for people wanting their care plans formally altered as their needs changed or increased needs during lockdown.

And councils overall spend on home care (both direct payments and other provision) has similarly varied – whilst 38 out of 85 councils responding to FOI requests provided figures showing they had increased spending, 46 of them had reduced it.

Mencap report a “mixed picture”, with some local authorities “being very good and allowing people to use the payments flexibly and to find creative solutions to care, while other local authorities haven’t gone down that path, and some have reduced direct payments”.

“Call us after COVID”

The guidance insists councils should be regularly communicating with people reliant on social care to ensure they feel ‘safe and reassured’ during the pandemic and are aware of their options – which in theory could include paying family or friends if a care worker is sick or isolating due to COVID, or paying for food deliveries or technology to enable communication. But many report having felt abandoned and uncertain about their options.

Jenna, from Hertfordshire, had a council-funded carer for her nine-year old son, who has severe learning difficulties. But at the start of COVID, the carer was redeployed to the COVID rapid response team. After what Jenna admits was an error she made with the paperwork when she was “incapacitated” by the initial stresses of lockdown, she found out the council had stopped all of her direct payments. She cleared up the paperwork, but then received a response saying that the payments wouldn’t be reinstated because they had no carer at that point. She has had ‘no communication of who can be employed’ under her direct payments.

From Easter until mid-August, Jenna was left having to provide 24/7 care for her son almost entirely by herself, with no support other than a carers allowance, which works out “As something ridiculous like a quid an hour”. This left her with: “Literally no help whatsoever.. I did feel like we’d been abandoned.” As a co-ordinator for SEND national crisis, Jenna says she’s spoken to a number of other parents that have struggled to find care for their children during COVID: “I don’t know how these parents are surviving because I’m barely coping.”

Sarah, from Newham, has also found that lack of communication from the council has exacerbated the impact of lockdown on her mental health. Sarah helps to look after her daughter Lucy, who lives separately from her in supported living, and has been using a wheelchair ever since a lorry hit her school bus when she was 15.

Lucy’s care package had been cut before the pandemic, and they’d been struggling to change it as Lucy’s living situation has become unbearable. Her home isn’t wheelchair accessible, meaning she is unable to even shower or wash her hair without her mother’s assistance.

However, Sarah heard nothing from the council: “I haven’t had a call back from social services since. They've doubled her antidepressants and then said, ‘call us after COVID’ but how long is a piece of string?”

Worse to come?

In July, 109 out of 137 councils said that they had not adopted easements to formally opt out of their duties under the Care Act but that ‘strategic planning is underway’, in response to a Freedom of Information request from CASCAIDr, a charity that offers legal advice on adult social care.

Most replies were very vague, and the organisation’s head Belinda Schwehr concurred with Councillor Sexton that it would have been more transparent – and offered councils more legal protection – if they’d actually adopted easements. Schwehr suggested too that some councils have reacted to the pandemic-induced closure of day services “as a justification for cutting the direct payment or budget” that funded it.

The reality is that many social care has been in crisis for a long time, with underfunding from central government forcing councils to make extremely difficult decisions.

In 2019, two thirds of complaints made to the Local Government Ombudsman were upheld, and a number were deemed as breaching the Care Act, which indicates councils haven’t been conforming with their legal duties since well before the pandemic – if ever.

A striking claim from the latest report from the Association of Directors of Adult Social Services (ADASS), is that 0% of respondents are fully confident that their budget will be sufficient to meet their statutory duties next year.

The report – published a couple of months ago when there were hopes a second wave of the virus could be avoided – said that even so, an already fragile care sector was likely to buckle over the next two years and the pressures of COVID-19 will have a ‘catastrophic’ impact on the lives of disabled people without increased funding.

Last year the Economic Affairs Committee predicted the government would need to spend £8 billion on social care just to return to 2009/10 levels of access. Since COVID, even with all the additional costs of the pandemic, the government has only given a total of £3.7 billion emergency funding to local authorities for all services, not just social care.

Robert Jenrick, Local Government Secretary, claimed that emergency funding was allocated in the “fairest way possible”, but the poorest councils have been the hardest hit by the virus, and the funding has often not reflected that. For example, ultra-wealthy Buckinghamshire received only marginally less emergency funding than similarly populated but far poorer Liverpool.

Yet for those wanting to challenge their council’s decisions, it’s difficult. During the first wave of the pandemic, the Local Government Ombudsman completely shut down, and only resumed taking on new complaints on the 29th June. As noted by Polly Sweeney, this was a real issue, as: “It's the only way people might know what they’re entitled to without asking lawyers, who remain out of reach for most due to barriers in accessing legal aid”.

There’s also fear of challenging a councils decision about one’s care. Katherine Runswick Cole from Derbyshire took pre-legal action against her council for their decision to implement easements. Together with her lawyers, she managed to get the council to guarantee her son’s direct payments would remain intact after initial indication they would not.

However, Katherine emphasizes the risk of being unsupported by lawyers, saying “We have put our heads above the parapet, but we could not have done it alone…To some this will sound like paranoia, and yet to others who have navigated systems of power, it is an obvious risk.”

As a second wave of COVID-19 looms, councils on shoestring budgets face a struggle to care for people with disabilities. And the chaotic implementation of easements and widespread cuts to care suggests they could find themselves in even more of a precarious position than they’re in currently.