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 …… 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 storyhere ).
Among those who have raised concerns about DHSC’s failure to provide guidance is Baroness [Jane] Campbell, 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 advisor, 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.”
Leicestershire County Council has also failed to comment.
Little has been done across the world to provide Disabled people with the support and guidance needed to protect them during the coronavirus pandemic, despite many of them being in a high-risk group, a UN human rights expert has warned.
Catalina Devandas Aguilar, the UN’s special rapporteur on the rights of persons with disabilities, said Disabled people feel as though they have been “left behind”.
She said: “Containment measures, such as social distancing and self-isolation, may be impossible for those who rely on the support of others to eat, dress and bath.
“This support is basic for their survival, and States must take additional social protection measures to guarantee the continuity of support in a safe manner throughout the crisis.”
She called on governments to take reasonable measures to ensure Disabled people can reduce contact with others and cut the risk of contamination.
This should include allowing them to work from home, or providing access to financial aid.
She said: “Many people with disabilities depend on services that have been suspended and may not have enough money to stockpile food and medicine, or afford the extra cost of home deliveries.”
Devandas Aguilar also warned that the situation of Disabled people in institutions, including mental health units and prisons, was “particularly grave” because of the high risk of contamination and the lack of external oversight which could be aggravated by the use of emergency powers introduced to deal with the health crisis.
She said: “Restrictions should be narrowly tailored, and use the least intrusive means to protect public health.
“Limiting their contact with loved ones leaves people with disabilities totally unprotected from any form of abuse or neglect in institutions.”
She said governments should be reassuring Disabled people that their survival is a priority, and establishing “clear protocols” to ensure that access to healthcare does not discriminate against Disabled people.
And she said it was crucial that information on how to prevent and contain coronavirus was accessible to everyone through sign language, and the use of plain language, accessible digital technology, captioning, relay services, text messages, and easy-read formats.
She also said that organisations run and controlled by Disabled people should be consulted and involved at all stages of the COVID-19 response.
[With very many thanks to John Pring and Disability News Service, www.disabilitynewsservice.com ]