By Alain Catzeflis
There’s been a lot of talk about protecting the most vulnerable as the Covid-19 pandemic cuts a swathe through our population. Well it hasn’t quite worked out that way. The reality is people dependant on social care have been left exposed between wind and water and scythed down in their thousands.
In the early days of the crisis, back in March, Boris Johnson and his inner circle flirted with the fluky concept of herd immunity ostensibly to build resilience among the fittest while throwing a protective cordon around those most at risk: a kind of Maginot Line that would allow the virus to flow between our fortifications eventually exhausting itself while shielding the frail.
Matt Hancock the Health Secretary said on March 13: “We are working closely with partners from across the social care sector to ensure local authorities, care providers and our health and social workforce are prepared to take action to protect our most vulnerable” Such glib assurances are almost bound to disappoint at the best of times. But now, as the appalling failure to protect those in care homes demonstrates, they seem especially gratuitous.
Even in normal times, ensuring that a vulnerable loved one – elderly, frail, disabled or all three – who is reliant on the state directly or indirectly for support, is a relentless and sometimes exhausting battle with the care bureaucracy. Making sure that our daughter, who is autistic and has learning disabilities, gets the support she needs is a journey of eternal vigilance.
For people with a disability, soundbites such as ‘we will do whatever it takes’ and ‘we’re all in this together’ ring especially hollow. Bitter experience has taught them – especially over the period of austerity which has hit them hardest– that it’s all-too-often every man for himself. Togetherness is for others.
This sense of being, yet again, defenceless is reinforced for many disabled by startling provisions buried in the Coronavirus Act 2020 that, in effect, suspends their hard-won statutory rights enshrined in the Care Act (2014) properly to be supported by the state.
The Care Act, and the Mental Capacity Act before it, are the bulwarks of a policy intended to help the disabled live a full life and receive high quality support tailored to meet their individual needs on a playing field that is far from level. Cutting back on that vital support creates a two-tier pandemic in which the state is still in the top tier.
For centuries the disabled were hidden away and treated as less than human. We have come a long way but nowhere near far enough. People with disabilities remain desperately vulnerable. The abuse uncovered at Winterbourne View and more recently the shameful incarceration of people with autism in Assessment and Treatment Units (ATUs), are just the more extreme examples in a world that still sees the disabled as a cost to society rather than equal citizens.
Which is why the ‘easements’ allowed under the Covid-19 Act have sent anxiety levels among the disabled through the roof and why some are now resorting to legal action to question local authorities that have resorted to these.
Public policy lawyer Alex Rook has recently set up a novel law firm Rook, Irwin Sweeney with a social purpose. This includes affordable fees, pro bono work and, a radical new ‘Social Fund’; to help clients. He has launched a legal action to challenge local authorities who have availed themselves of this legislation which he regards as unnecessarily stripping the most vulnerable of their statutory protection.
He says “The Coronavirus act in principle may allow a local authority to not provide care to a disabled adult so long as it does not breach their human rights. That however is a low bar as the courts generally regarded a breach of human rights in the context of the provision of social care as being so bad as to be bordering on torture or inhumane treatment.
“The guidance, which is to aid interpretation of the act, does however shows that a local authority should not be using the easements other than in specified and in essence (exceptional) circumstances. At the moment there are 6 local authorities who have enacted the easements and there is of course a growing concern that others will follow suit. “
He adds: “Schedule 12 of the Coronavirus Act 2020 downgrades a wide range of Adult Social Care duties under the Care Act 2014. Most significantly it converts the duty to meet eligible needs in section 18 of the Care Act into a power, unless failing to meet needs would result in a breach of a person’s human rights.
“However the statutory guidance published by the Department of Health and Social Care, Care Act easements: Guidance for Local Authorities, updated on 1 April 2020, states that local authorities should only be operating under the schedule 12 ‘easements’ as a matter of last resort, and prescribes a detailed process by which a local decision should be taken to resile from the full Care Act scheme for a limited period.
“From the (Derbyshire) Council’s website, it is not at all clear when or why this step has been taken, and indeed the section of the website for Adult Care Services is entirely silent about the decision to operate under the easements.”
Derbyshire County Council are one of only eight local authorities that have reported a decision to operate under easements to the Department of Health and Social Care. Two of the eight authorities have reportedly already returned to operating under the full Care Act duties.
What could these easements mean in practice? Well, for someone with a disability in lockdown, say someone who needs help getting dressed, getting food in, going to the shops, even watching the telly, this could be devastating should their carer be withdrawn. They would be left with minimal support and their local authority would now be under no legal obligation to meet their specific needs under their agreed Care Plan unless that led to a breach of their human rights.
So, in a nutshell, these councils saw this life raft pushed out by the government and said
“ We’ll have some of that”.
Now you might argue that if a council finds itself so depleted and short of staff that it has to make hard decisions about the allocation of resources it should be free to do so without fear of being pursued in the courts. You might even argue that at a time when the virus can strike anyone anywhere the disabled should take their chances just like anybody else.
But even if this argument held water – and it doesn’t by any ethical metric – It isn’t obvious that any of the councils who have gone for easements find themselves in this situation.
Moreover why does an acknowledgment that in these difficult times we should perhaps reasonably cut councils doing their best some slack (after years of cuts) have to be backed by law? If the Care Act and its provisions are right in principle surely, they’re especially right in a pandemic.
What can possibly underpin the view that in the most serious public health crisis in a century it is morally or practically the right thing to curtail the fundamental rights of those who are in most need of support and those whom the government has single out for special protection?
For the most vulnerable this lockdown looks like stretching into the far distance. They will, through no fault of their own, be deprived of their liberty to an even greater extent than the rest of us. Many are already struggling to maintain or in some cases restore their benefits under a dysfunctional Universal Credit system. Some survive on the bare minimum of £66 a week.
If we mean what we say then we should be protecting those most at risk and not the authorities by redoubling our support for them, securing food and medicine supplies, providing added financial support as well as testing and sufficient PPE for carers.
There is a kind of breath-taking cynicism in this potentially lethal footnote in the Act. The government chose as a central plank of its austerity policy to cut council funding by up to 40%. Local authorities were as a result forced to cut back services including core ones in social care.
But the government is now saying to local authorities on the one hand ‘protect the vulnerable, do what you can’ but on the other ‘but if you can’t don’t worry, we have your back’.
A brutal assessment of how the disabled are disadvantaged by the Equalities and Human Rights Commission
This sense of inequality, the grievance that the disabled are if not second-class citizens, then not entirely on a par with the rest of us, was brutally underlined by the Equality and Human Rights Commission (EHRC) in its 2017 report A Journey Less Equal. It is worth quoting it at some length:
“Disabled people are being left behind in comparison with others in society; some groups of disabled people – in particular those with mental health conditions and learning disabilities – experience even greater barriers.
More families that include a disabled person live in poverty; access to mental health care is inadequate; and housing and transport fail to support disabled people to live independently and fulfil their potential and aspirations.
The conclusion we must draw from the evidence is that disabled people are still being treated as second-class citizens…. life chances for disabled people remain very poor, and public attitudes to disabled people have changed very little.”
It is easy to romanticize disability: Some like the late Stephen Hawking are rightly lionised for their extraordinary achievements despite or perhaps even because of their disability. Films like Rain Man and TV series like the A Word paint an affectionate ultimately uplifting picture that is within our ken but rarely shows the struggle that people with disabilities and those who care for them go through.
When eventually we come out of this there will be a reckoning and hopefully a rethink about our priorities. We could start in social care from the simple premise set out by Simon Duffy: “There are not those who can and those who cannot; there are not those who give and those who only receive. There is only Us.”