As a disabled person, with multiple, complex, rare diseases, I am not only particularly vulnerable to Covid-19, I am also dependent on social care. So I have been watching the government’s response to the coronavirus pandemic with rapt attention. But for all Boris Johnson’s talk that his government will “do whatever it takes” because “we are all in this together”, when the Coronavirus Act 2020 was passed into law last week, it became clear that, as per usual, disabled people are excluded from this sense of ‘togetherness’.
Buried in the vast Act is a clause that will increase the risk of those who are already most vulnerable. This clause removes local councils’ duties to provide care for disabled people unless it is a breach of their human rights. Under normal circumstances, this would have disastrous consequences for many people, but at a time when a large number of the 1.5 million of us will be self-isolating and shielding for months on end — to protect not only ourselves but also the functioning of our extremely precious NHS — this could be potentially devastating.
While the clause does specify that human rights must not be breached, this is an extremely low bar. Disability equality organisation Inclusion London has been advised by a leading barrister that in order to reach the threshold of breaching human rights, the situation would have to be extremely severe or life threatening. In practice, this means that in their day-to-day life, disabled people (even those with very high needs) will be left with minimal support at best, and without any support at worst, placing their wellbeing in real danger.
What can possibly underpin the thinking that in this time of crisis it is ethical or in any way appropriate for the government to severely limit the fundamental rights of those who are in most need of support?
But then this decision is hardly out of step with the government’s record over a decade of austerity. The policies over the last 10 years have stripped many disabled people of the support they have needed to survive, and have led to thousands of preventable deaths. Nor is it out of step with decades of systematic underfunding and undervaluing of our crucial social care system, or this government’s continuing failure to implement the long-promised care system review. And nor, sadly, is it out of step with other measures to address the Coronavirus pandemic, which also overlooks, excludes or penalises disabled people.
For instance, while it is welcome news that Universal Credit claimants will now receive £1,040 more annually, approximately two million people on other benefits have been overlooked and are left more economically vulnerable. It is utterly depressing, although unsurprising, that most of those two million people are either chronically ill or disabled, while those on Carers Allowance — who are helping many of the most vulnerable survive this pandemic — are compensated a paltry £66.15 a week.
“What can possibly underpin the thinking that in this time of crisis it is ethical or in any way appropriate for the government to severely limit the fundamental rights of those who are in most need of support?”
Meanwhile, numerous care providers report that they have been advised by GPs that all people reliant on their care services, including healthy young adults with learning difficulties, should be listed as ‘Do Not Resuscitate (DNR)’. Now, of course, many difficult decisions will have to be made during this emergency, but issuing such guidance, not based on medical evidence but on how disabled people are valued as human beings, amounts to eugenics.
Last year I became a Women’s Equality Party candidate for the now-postponed London Assembly elections because I want to advance equality for everyone. But as I stay indoors, shielding, trying to deliver my UCL teaching from home, while also navigating my own daily health needs without the carer I usually depend on, I am becoming increasingly concerned that disabled people’s hard-won rights are going backwards.
According to leading legal academics and practitioners, the 2020 Coronavirus Act will erode our civil liberties, rolling back 30 years of hard-won disability rights. It will have serious consequences for those the law seeks to protect, who may now be left without vital support or the right to request it, as enshrined in the 2014 Care Act.
We are calling for the government to direct care providers to ensure DNRs are not issued without consultation with patients and families and to provide emergency funding for social care, as well as for councils to continue to uphold disabled people’s right to care.
If we really are all in this together, and the government is really prepared to do whatever it takes to get us through this crisis, then it should find the same levels of funding for care as it has for the NHS and for businesses. It should not cut the amount of care available for those most in need.
Sarabajaya Kumar is a UCL professor, member of The Women’s Equality Party and disabled woman who is currently self-isolating for 12 weeks.