The government is facing accusations that its emergency planning for dealing with the coronavirus pandemic has “abandoned” disabled people who use direct payments to employ their own personal assistants (PAs).
Although the government finally produced guidance for the social care sector on 13 March, that guidance is 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.
The Department for Health and Social Care (DHSC) has so far failed to produce any guidance for disabled people on what they should do if they or their PAs become ill with coronavirus, or suspected coronavirus, or how to plan for such an eventuality.
And it had failed to ease those concerns by noon today (Thursday), despite attempts by Disability News Service (DNS) to clarify its position.
There are also concerns over how disabled people employing their own PAs can secure supplies of personal protective equipment (PPE), such as gloves, aprons and masks.
It came as the UN’s special rapporteur on the rights of persons with disabilities warned that little had been done to protect the rights of disabled people across the world during the pandemic (see separate story).
Among those who have raised concerns about DHSC’s failure to provide guidance is Baroness [Jane] Campbell (pictured), a crossbench peer and independent living campaigner, who relies on PAs for her personal care.
She has written to care minister Helen Whateley, pointing out the “urgent need for greater information and planning” for disabled people who employ PAs.
She told the minister that she and other disabled employers of PAs were “feeling particularly vulnerable at this time, without any detailed information on our particular circumstances.
“As we are deemed to be in the highest risk group, I feel there is an urgent need for greater information and planning for this cohort.”
Another disabled campaigner who uses direct payments and PAs, who has asked to remain anonymous, expressed similar concerns.
She began showing flu-like symptoms this week and said she was originally advised by NHS 111 to “self-isolate”, after she described her symptoms over the phone.
But when she explained that she relied on care workers visiting her twice daily, she was put on hold by the telephone adviser, before eventually being told that it was OK for her care workers to come in as usual, as long as appropriate hygiene measures were taken.
She ignored this advice and is instead attempting to self-isolate without any support from care workers.
She said the information she received could mean that other disabled people could be receiving care from a care worker who has come “directly from houses of people in self-isolation, on direct instructions from 111.”
She said that disabled people on direct payments were “having to make a choice between your health and your care, the lack of which will impact on your health anyway”.
She added: “People all over are asking what happens if they need to self-isolate.
“There appears to be no official answer, support or plan of action. I’m in that situation and have had no joy from 111, social services or my GP.”
Anne Pridmore, director of Being the Boss, a user-led organisation which supports disabled people who employ PAs, and who employs PAs herself, wrote to the director of social services at her local authority, Leicestershire County Council, asking what arrangements were in place for people who employ their own PAs through direct payments.
She received only a standard letter referring her to the government guidance, which says nothing about disabled people on direct payments.
She said: “It feels to me like this government are just allowing disabled people and elderly people to die.”
Pridmore has posted a video on social media, in which she explains her concerns.
She told DNS: “It needs to be said. There are a lot of us in this situation.”
She has now been told by the council that if her care arrangements break down, she will be placed in a residential home.
But she said she would “rather be dead with the virus” than live in a care home, while she thought it was unlikely that any home would accept someone in her position anyway because of the risks of infection.
She said: “I just think it’s shocking. We have been abandoned.”
DHSC had not answered questions about the situation facing disabled people who employ their own PAs by noon today (Thursday).
Leicestershire County Council had also failed to comment.
*Sources of information and support during the coronavirus pandemic include the following:
The Department of Health and Social Care
National Survivor User Network