The government has failed to publish guidance to help disabled people survive the coronavirus pandemic if they use direct payments to employ personal assistants (PAs), nearly two weeks after ministers provided advice for the wider social care sector.
It is now almost a fortnight since the Department of Health and Social Care (DHSC) finally produced guidance for the social care sector on 13 March.
But that guidance was aimed at service-providers in the residential care, supported living and home care sectors, and not at individual disabled people who employ their own care staff.
Despite repeated calls for the government to produce guidance aimed just at disabled people who employ their own PAs, no such advice had been published by this morning (26 March).
Last week, one disabled activist and PA employer accused the government of abandoning disabled people who employ their own PAs.
It is also nearly two weeks since the disabled crossbench peer Baroness [Jane] Campbell (pictured) wrote to care minister Helen Whateley (on 13 March) to ask for the government to provide detailed information to assist disabled people with high support needs who employ their own PAs.
In an interview with BBC News on Tuesday, she repeated concerns raised last week by Disability News Service (DNS).
She told the BBC: “The problem is that we are not attached to any agencies, so basically we are on our own.
“We are employers and we have to put in place our own safety mechanisms.”
She told the BBC that she had yet to receive a reply from Whateley, although she has not been able to access her parliamentary email account since Sunday, so it is possible the minister has replied to her this week.
Mark Williams, from Bristol Reclaiming Independent Living (BRIL), said many of his members were “very concerned” about the lack of information for employers of PAs; such as what to do if they are their PAs become ill; whether PAs have the right to refuse to work; what equipment disabled people who employ PAs can buy with their direct payments; and what their rights are as employers of PAs.
Last week, DNS reported how the UN’s special rapporteur on the rights of persons with disabilities had warned that little had been done to protect the rights of disabled people across the world during the pandemic.
This week, DNS asked DHSC again why there had been no coronavirus guidance published for disabled people who use direct payments to employ their own PAs.
DNS also asked how disabled people in this situation would be able to secure vital supplies of personal protective equipment for their PAs, and why Whateley had not yet responded to Baroness Campbell’s letter.
Last week, DHSC failed to answered DNS’s questions, and it had again failed to do so by noon today (Thursday).
DHSC told the BBC in a statement that it recognised the concerns among those receiving support from PAs and would do everything it could “to ensure local authorities continue to provide care”.
Baroness Campbell told DNS this afternoon that she believed disabled employers of PAs would “have to look around and source guidance from here and there” in the absence of government guidance.
She said: “Some local authorities are doing better than others in terms of identifying and contact PA employers, offering guidance and some support.
“For instance, today I was sent a form to order personal protective equipment from my social services department.
“It’s all a bit piecemeal and certainly not aimed cohesively at the 75,000 disabled people who directly employ their own PAs.
“However, given the situation is so unprecedented, I would suggest disabled people do what they always do so well, and that is help and support one another, by information exchange, peer support and any other tips that will help get us through.
“I say this because it’s pretty clear that local clinical commissioning groups and local authorities are under enormous pressure to cope with the staff available to them to support those already in the system and that is not going to change until the 500,000 volunteers are organised and trained enough to provide emergency support when needed.”
The Penderels Trust, which provides support for about 15,000 users of direct payments in England, has produced its own information, with a “frequently asked questions” document (PDF) and a factsheet (PDF) to help PA employers prepare for a situation in which they or their PA should fall ill or need to self-isolate.
*Sources of information and support during the coronavirus pandemic include the following:
The Department of Health and Social Care
National Survivor User Network
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