I am dependent on care workers, but I’ve had to make my own masks out of old T-shirts. Now our safety net is at risk
Tue 24 Mar 2020 05.00 EDT
Last modified on Tue 24 Mar 2020 12.30 EDT
Before Covid-19, both the NHS and social care were already in crisis. Overstretched and underfunded, hospitals were overwhelmed by winter flu and a backlog of people needing community care were waiting for pitifully limited provisions. Now the country faces a new crisis, these cracks have widened even further and people like me are already beginning to fall through them.
I am one of the 1.5 million people who were asked on Sunday by the prime minister, Boris Johnson, to self-isolate for 12 weeks. Already more than aware of my “vulnerable” status, I have been observing self-isolation diligently. I realise coronavirus could leave me seriously ill, increasing the burden on a stretched NHS, so I am obeying those restrictions. But the amount I can do is limited when I’m wholly reliant on support from health and social care systems to remain out of hospital. I have 24-hour care, seven days a week, and am dependent on care workers for everything from repositioning me in bed and managing my stoma, my feeding pump and my non-invasive ventilation machine, to all other aspects of my personal care.
I arrange and manage my own care through the government system of “direct payments” – a scheme that devolves to me all choices over employment responsibilities and care management. I choose and hire my own care workers and am independent and self-managing. To date, this has been incredibly liberating, but so far, in pandemic times, I have been left feeling stranded, with no access to a trained bank of cover staff, or even personal protective equipment – such as gloves, masks and hand sanitiser. The communities secretary, Robert Jenrick, yesterday announced that “hubs” would be set up across the country to deliver food and medicine to people in my position. He said: “Nobody needs to worry about getting the … essential items that they will need.”
However, I’m sceptical. The omens so far aren’t good. I’ve had to buy clean clothes for employees to wear around the house to protect me from outside germs. I’ve had to make masks for them out of old T-shirts. I’ve started to wash and reuse disposable vinyl gloves. At one point I tried to make my own hand sanitiser following a recipe I found online, before realising I did not have the requisite rubbing alcohol. If I can’t protect myself from my eight-plus employees moving in and out of the house all day, my chances of avoiding coronavirus are low. Talking to other disabled people, I know we are in the same situation – unable to safely cope without this equipment, but fearful we will be left without access to it.
The other problem Jenrick’s announcement does not address is that, in many cases, people are banned from using self-employed care workers, hiring friends and family, changing wage rates, or spending on recruitment if everyone falls ill at once. We may also be forbidden from altering our care plans. With my carers’ agreement, I would much rather they worked 24- or 48-hour shifts to minimise the number of people coming in and out of the house and, with it, my level of exposure. Whether I’d be permitted to use my budget in this way would need to be agreed by my funding body – and these agreements take time. Time during which I will be left at increased risk.
Meanwhile, contingencies are limited. For disabled people who use agency care, theoretically the agencies are responsible for also arranging cover. Failing this, I try my bank workers, but if they can’t work, I’m stuck. I am not funded to cover sick pay, and don’t yet know how the government announcements will impact on my employees. As it stands I know they might be forced to choose between coming to work ill and risking my life, or being left without income and unable to pay their rent. This is exploitative, unfair and creates a dangerous problem for everyone involved. Direct payments leave me with the responsibility of covering my own shifts – but these are different times.
Typically the local authority would be the provider of last resort, but with the introduction yesterday of the coronavirus bill, ministers can now suspend the key duties set out in the Care Act. Local authorities will not be obliged to provide care beyond that which protects human rights. Eligible needs do not have to be met – and, in theory, councils could cease provision of almost all social care. This would result in deaths. Disabled people are terrified that if our own care arrangements fall through, there will be no safety net to catch us. This rolling back of our rights is unprecedented, and how it will look in practice is uncertain. It seems clear, though, that the results of this change could be incredibly destructive: setting a precedent by rolling back the right to live independently and, in the worst case scenario, taking us back to the days of institutional living.
To top this off, if we contract coronavirus and get sick, disabled people will not be able to rely on the NHS valuing our survival equal to that of others. Doctors will be forced to make assumptions about our likelihood of survival, or our quality of life. In Italy, reports suggest that people over a certain age, and people who have pre-existing conditions have been deprioritised, out of a desperate utilitarian need for ventilators and ICU treatment to be given to those deemed “most likely” to survive.
This also seems likely here in the UK, after the new Nice guidelines on dealing with Covid-19 patients appeared to deprioritise anyone dependent on others for help in activities of daily living. These decisions are obviously terrifying but we’re also afraid of what’s currently occurring: a series of small decisions leading to the removal of measures that protect our safety. We don’t need to wait for ICUs to be full before decisions are taken about our right to life – those decisions are already being made.
• Jamie Hale is a disabled poet and essayist
