Ministers have been warned that their lengthy delay in publishing guidance to help disabled people who use direct payments survive the coronavirus pandemic is risking lives across the country… and will not be forgotten.
The Department of Health and Social Care (DHSC) has finally confirmed to Disability News Service (DNS) that it will publish guidance, but this confirmation has come nearly three weeks after it produced guidance for the wider social care sector on 13 March.
DHSC published its action plan on dealing with COVID-19 even earlier, on 3 March, and was criticised then for saying little about social care, with disabled people warning about the potential impact on people who use direct payments to employ their own personal assistants (PAs).
DNS put questions to the department on 17 March on why it had failed to publish guidance for employers of PAs, and asking how users of direct payments would be able to secure vital supplies of personal protective equipment (PPE) to protect them and their PAs from the virus.
Among other key questions are what emergency contingency plans are in place for those PA employers who find themselves without staff at short notice because of a COVID-19 incident.
When it finally responded yesterday (1 April), DHSC said only that guidance for disabled people who use direct payments would be published “shortly”.
It said that PAs having difficulty obtaining PPE “should approach the local authority adult care service or CCG [clinical commissioning group] that provides the direct payment and ask for assistance”.
The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said last night that the government’s failure would not be forgotten, and that it had put disabled people’s lives at risk.
BRIL said it was “very concerned” about the length of time it had taken the government to produce any guidelines, and that the “indifference shown by central government to the many thousands of people who use direct payments and PAs is having serious consequences”.
The group said it had been left to disabled people’s organisations, self-advocates and grassroots groups to piece together and share guidance.
A BRIL spokesperson said: “Our local authority had managed to get a supply of PPE, and local disabled people’s organisations and direct payment support services are doing what they can to contact people.
“However, we have been told that these supplies may run out soon. We know that the situation in other areas is worse.
“BRIL have been contacted by people who employ their own PAs, and by people with commissioned care, without PPE. People are desperate and scared.
“The first cases of coronavirus in the UK were two months ago. The government have had weeks to consult, plan and inform.
“But their repeated refusal to consult with our organisations, and to put effective plans in place, means not only that we are not thought about – our lives are at risk.”
DHSC also confirmed this week that care minister Helen Whately would answer a letter about the issue from disabled crossbench peer Baroness [Jane] Campbell, which was sent on 13 March, “in due course”.
Baroness Campbell told DNS that the government’s response to the issue had been “inadequate”.
She said: “All our lives are in the risk zone at the moment and we all have to support one another in the community to keep safe.
“There are some remarkable volunteers who are doing their best to help us during this time and we thank them for their thoughtfulness.
“However, disabled people have been disproportionately left out of the central emergency planning processes and disabled people are naturally deeply anxious as a result.
“The drastically slow response from the government to our major concerns over the past few weeks for PPE, or emergency people who can at least get us out of bed and surviving, is alarming.
“It’s time to act now – not in due course.”
Baroness Campbell spoke this week to the leading US disability rights activist Judy Heumann and was told she was “in exactly the same boat and agreed that if you were a PA employer, it’s like you are living off the grid”.
She said: “Nobody knows what we need or exactly how to locate us and we are not locked into the nationally recognised care system.”
Among those disabled people highlighting the lack of information about how to access PPE this week was disabled campaigner Francesca Di Giorgio, who described on social media on Tuesday how she had been unable to leave her bed to visit the bathroom because she had no PPE and one of her PAs had developed symptoms of coronavirus during a three-day shift.
Di Giorgio (pictured) was told by her local authority that it had no PPE available for disabled people like her who employed their own PAs.
She was also told by the council that if she developed COVID-19 symptoms herself, and did not need to go to hospital, the only option would be to be placed in a care home because it would have supplies of PPE, although the council later told her it would do all it could to keep her out of residential care.
She tweeted: “How is institutionalising me at great cost to the local authority instead of providing PPE to my PAs a reasonable #covid19UK social care contingency plan?”
She added: “All of this was preventable if @DHSCgovuk planned for Direct Payment users.”
She tweeted yesterday that she would now need to self-isolate for seven days, and would need supplies of PPE to keep her other PAs safe during that time.
Anne Pridmore, director of Being the Boss, a user-led organisation which supports disabled people who employ PAs, and who employs PAs herself, said the government’s failure was “shocking” and “sums up what they think about disabled people”.
She said: “Nothing is being done for people on direct payments. They think they cost too much and basically if they get the virus it will be less cost to them.”
Pridmore, who has previously accused the government of “abandoning” employers of PAs, said disabled people across the country in her situation had been left without any guidance from the government on how to survive the coronavirus pandemic, particularly on what they should do to secure supplies of PPE.
She has also heard nothing from her own council about what to do to secure PPE.
Other disabled people have added their concerns about the government’s failure to produce guidance.
Caroline Miles, from the Bristol area, said: “The failure of the government to include any mention of the existence of disabled people who employ PAs using direct payments, or even privately, has meant that all other organisations and businesses have similarly ignored or not been aware of their existence.
“For example, supermarkets have refused to allow carers who are not in agency uniforms or without ID into shops, local authorities themselves are telling disabled people that their carer should get PPE from their agency.
“People are panicking about what sort of ID they could possibly use.
“The agenda has been set for people to be completely left out of any support that might be available.”
LC Groux-Moreau, also from the Bristol area, added: “As a disabled person working for a disability charity, I am worrying constantly about my community.
“Being unable to guide people because I simply cannot secure the answers they need or they are not clear enough is really taking its toll on me.
“I feel helpless, when my position should make me feel empowered and put me in a prime spot to inform other disabled people.”
*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
A note from the editor:
Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations.
Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009.
Thank you for anything you can do to support the work of DNS…
Ministerial duo dismiss concerns over social care funding crisis
‘Severely neglected’ man found dead, three months after DWP assessment
Government’s ‘criminal’ plans for care charging ‘will crush disabled people under debts’