I just spoke on a The World Transformed webinar about coronavirus, and I highlighted some key demands that are emerging from disabled people. A lot of people asked for more information about those in that chat, so here they are:
- Adequate pay (living wage) for Personal Assistants and carers who all work in high risk roles, including those doing 1:1 and agency work with ill and disabled people through direct payments
- Funding for full sick pay for Personal Assistants and carers whether employed through care agencies, direct payments, or other measures so they aren’t forced by financial circumstances to come in when ill
- Enough Personal Protective Equipment for PAs and carers working with disabled people
- Extra care funding for disabled people who have to hire PAs and carers at short notice to cover shifts as people fall ill
- A guarantee by the government that disabled people won’t be deprioritised in access to treatment for the complications of coronavirus as is happening in areas where health systems are being overwhelmed
I spoke about my experience as a disabled person who uses direct payments – which allow me to employ my own personal assistants directly, but which leave me as an atomised individual employer.
I am very vulnerable to coronavirus, I use a ventilator part-time (mostly at night) and don’t have a spare bacterial filter for it. I have carers 24/7 who constantly come in and out of my house, meaning I’m dependent on them taking care to avoid contracting coronavirus, because if they get it, I get it.
I don’t have access to personal protective equipment for my carers. We’re making masks out of t-shirts, hand gel out of hydrogen peroxide, alcohol, and cucumber gel, and washing disposable gloves in the machine to re-use them.
I can’t pay my carers if they’re off sick. This means they might come into work ill – not out of cruelty but because they have to work in order to pay their rent, and I know that. If they’re off sick I don’t have access to an agency-like pool of people to cover their shifts, though I’m hiring.
In Italy, health services have been so overwhelmed that elderly people and those with significant pre-existing conditions just aren’t being treated. This terrifies me, because – like most people – I want to live.
Please think about these demands and the experience of disabled people amidst the coronavirus crisis.