Ministers have finally published guidance that should help disabled people who employ their own personal assistants (PAs) to stay safe during the coronavirus pandemic, but activists say the delay in producing the document has put lives at risk.
The guidance for people receiving direct payments was published by the Department of Health and Social Care (DHSC) on Tuesday, following weeks of mounting criticism from disabled activists.
It was published more than five weeks after DHSC produced written advice for the wider social care sector that ignored the needs of disabled people who receive direct payments to employ PAs, and more than a month-and-a-half after DHSC published its first COVID-19 action plan (on 3 March).
Disability News Service (DNS) has been asking the department since 17 March why it had failed to publish guidance for employers of PAs.
Asked to explain the delay, DHSC had failed to respond by noon today (Thursday).
An estimated 70,000 disabled people employ PAs through direct payments.
The new guidance – published alongside a series of questions and answers based on concerns raised by members of the public – includes steps that employers of PAs should take if their PAs become ill with coronavirus; what steps they should take if their PA suspects they have COVID-19; and what they should do if they suspect they have coronavirus themselves.
There is also advice for employers of PAs on when to use personal protective equipment (PPE) and how to source it.
Baroness [Jane] Campbell, the disabled crossbench peer who has repeatedly pushed the government to publish guidance, welcomed its publication, and particularly a section that said there should be a “more flexible approach” taken to how direct payments are used.
She said: “Some local authorities have refused to allow disabled people to employ family or friends and now it’s clear that they should not refuse.”
Disabled activists, including the grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL), have previously said that the government’s failure to publish the guidance would not be forgotten, and had put disabled people’s lives at risk.
BRIL said last night (Wednesday) that it believed the document was flawed.
BRIL’s Mark Williams (pictured) said: “We are very worried how long it has taken for the government to issue these guidelines.
“Now that they have arrived they seem to be completely out of sync with the reality of this crisis, and the situation on the ground. And there still seem to be significant gaps.
“It uses blanket categorisations with confusing terms such as ‘vulnerable’, and ‘extremely vulnerable’, and does not take into account that many people do not know where they ‘fit’ within these definitions.
“The suggestion to explore ‘alternative arrangements’ (contingency plans) is not very practical for many people – including those in my situation – and lacks any specific examples.
“The suggestions to use family and friendship networks to patch together care will not be possible for many, and makes huge assumptions.
“The guidance to source your own PPE from ‘preferred suppliers’ in a time of global shortage and spiralling prices is outrageous.”
Mike Steel, also from BRIL, said: “Hundreds of thousands of disabled people, PAs and family members have been waiting weeks for national guidance on keeping themselves and others safe.
“In its absence, local authorities have been left to make things up as they go along, with disabled people’s organisations and voluntary groups struggling to fill the gaps.
“People with direct payments for NHS continuing healthcare also seem to have been forgotten by central government.
“The more detailed advice on flexible use of funding is welcome, but we fear this may be too late for some – this is a potentially life-threatening situation.”
He said advice had previously “varied widely” across the country, with both disabled people and PAs in the south-west telling BRIL they were worried and had either been sent no information, or that online guidance was not accessible.
One contact had described the situation as a “fiasco”, said Steel.
He said Bristol City Council council had admitted that only a small number of disabled people on direct payments had received PPE so far.
It came as one Labour councillor admitted publicly on social media that sourcing PPE was “becoming increasingly difficult” for the Labour-run council, so it was now appealing for “any available stock, donations, leads or innovative ideas”.
Caroline Miles, a BRIL member, said issuing guidance at such a late stage was “virtually a nonsense, setting out simplistic scenarios that some people have already had to deal with without guidance and which are inappropriate for many others”.
But she said the separate question and answer document was “quite helpful and the request for more questions to be submitted for future ‘editions’ is welcomed”.
Another BRIL member, George Ayres, added: “After five weeks we got a government guidance yesterday, with no easy read or British Sign Language versions, nor mentions of self-funders.
“Is it the case that the disabled population does not matter to the central government?”
Anne Pridmore, director of Being the Boss, a user-led organisation which supports disabled people who employ PAs, and who employs PAs herself, said she believed the delay in producing the guidance had put disabled people’s lives at risk.
She said: “I think it’s shocking the way people on direct payments have been treated.”
Pridmore is among the many disabled employers of PAs who have tried in vain to secure accurate answers to key questions from their local authorities, including on the PPE issue.
*Links to 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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