Disabled people have described how they have been abandoned by the UK government, local authorities, and the supermarket giants, as they struggle to survive during the pandemic crisis.
Their descriptions of their experiences over the last two months are included in evidence provided by the pan-London disabled people’s organisation (DPO) Inclusion London to an inquiry by the House of Commons women and equalities committee.
Inclusion London has told the committee about the lived experiences of some of the nearly 300 disabled people who responded to a survey on the impact of the pandemic, as well as evidence from some of the 70 DPOs Inclusion London supports in the capital.
Other user-led organisations have also shared their responses to the committee this week, with both Disability Rights UK and WinVisible revealing evidence of the serious impact that measures to tackle COVID-19 have had on disabled people.
All three DPOs have submitted their responses to the committee for its inquiry into the impact of the pandemic on groups protected under the Equality Act.
Inclusion London said its evidence showed that the reality for many disabled people who use social care was now “stark”, with staff shortages, a lack of personal protective equipment (PPE), “sometimes a complete lack of communication or support from the local authority and high levels of anxiety and fear”.
It told the committee: “People are having to make an impossible choice of either protecting themselves and self-isolating without support or taking risks and receiving essential support even though this support might expose them to covid-19.”
One user of council-funded support told Inclusion London: “My care agency is not getting adequate PPE, and they are so short-staffed at present that I’ve been lucky to get a shower once a month.
“I am not getting one in three of my daily care calls.”
Another said they had had to “fight” for three weeks to obtain the PPE they needed for their personal assistants (PAs).
They added: “Social Services have been appalling. We feel abandoned. And despite being on the government’s vulnerable list, we can’t get a shopping delivery for another 10 days.”
Problems with securing food and other groceries were also mentioned frequently to Inclusion London.
One respondent said the supermarkets had “thrown their existing physically disabled customers under a bus”, after prioritising home deliveries for those with certain long-term health conditions who have been placed on the government’s “clinically extremely vulnerable” list.
Another said: “Being blind and living alone with no support nearby, I cannot physically attend a supermarket as I require a member of staff to guide me around the shop.
“I have no idea where my next meal is coming from.”
But Inclusion London’s evidence also included some positive examples of local authorities that have taken a “proactive approach” to disabled people’s rights.
Medway Council in Kent “mapped out existing support networks for each service user weeks before the lockdown” and then supplied PPE directly to service-users, as well as setting up a scheme in which available PAs could be redeployed to support other users of social care who were low on staff.
Hammersmith and Fulham council in London, which has been working closely with disabled people to co-produce policies, “reassured service users that existing levels of support would be maintained” and “allowed a lot of flexibility in terms of how social care needs can be met”.
And Tower Hamlets council in east London worked closely with the local DPO, Real, to ensure that disabled people’s social care needs were addressed.
Among concerns raised by Inclusion London in its evidence were the impact of the controversial guidance that was released – and later amended – by the National Institute for Health and Care Excellence (NICE) on which patients should receive intensive care treatment, and letters some patients received from GPs encouraging them to agree to a “do not attempt resuscitation” (DNAR) note being placed on their medical records.
One disabled person with a mental health condition who took part in the survey described how they had been too scared to leave their house for nearly a month – which left them feeling “trapped and controlled and claustrophobic” – because they now believed that “as someone with pre-existing conditions, doctors will leave me to die in favour of someone who has a better chance of surviving”.
Inclusion London said the government’s failure to assess the impact of its policy decisions on disabled people was “largely due” to its inability to engage with DPOs as it developed policies that made disabled people “doubt our lives are of equal value”.
Disability Rights UK (DR UK) told the women and equalities committee, in its submission to the inquiry, that the government’s decision to omit millions of disabled people from the “clinically extremely vulnerable” list left many of them “feeling anxious and unsupported”.
The lengthy delay in producing guidance for those on direct payments left disabled people “feeling extremely anxious about the steps they need to take, should they or their personal assistants become ill”, said DR UK.
And it said that the government’s emergency Coronavirus Act, “rather than introducing measures to provide increased support and protection to disabled adults and children, did the opposite”.
DR UK was also critical of the major supermarkets, for their “completely unacceptable” refusal to speak directly to disability organisations about the problems many disabled people were having in securing food.
DR UK also pointed to failings in accessible information, employment support, benefits, and higher education, and the failure to provide parents with the support and reasonable adjustments they need to educate their disabled children at home.
And it was critical of the government’s “single focus” on the NHS, telling the committee: “Whilst we applaud the amazing work of the NHS, both for the care it provides and for the way it has increased critical care capacity, we feel that the government should have adopted a more joined-up approach across health and social care from the outset, treating them as equal partners.
“Social care should have been given parity in terms of priority and investment, to support and protect disabled people and those with serious health conditions.
“Three and a half weeks after lockdown, a social care action plan was produced.
“Unfortunately, this was after many people in care homes had died.”
In its submission to the inquiry, WinVisible said the reality for disabled women was that measures being taken against coronavirus were “threatening our lives through starvation, denial of medical treatment and lack of social care daily living support”.
WinVisible said the controversial NICE guidance and the pressure to accept DNARs were reminiscent of Nazi Germany’s eugenics policies, which branded disabled people “useless eaters”.
And it raised concerns about guidance issued by NHS England last month (see separate story) which only allows a visitor to accompany a patient into hospital in four situations: if they are in labour; if they are receiving end-of-life care; if they are visiting their child; or if they are experiencing significant mental distress.
WinVisible pointed to one disabled woman who said: “If PAs and carers are not allowed to be with me, my life would be at immediate risk as I need experienced and appropriately skilled support with ongoing respiratory physio, operating various prescribed specialist equipment, assistance with personal care, and even to call a nurse as I am unable to press a call button.”
It also pointed to problems with securing food and groceries.
One disabled woman was unable to book a supermarket delivery slot or stand in a queue, and had to cancel her home help because they did not have the correct PPE.
When she cancelled her support, council staff initially told her she would still be charged for the service.
WinVisible also praised Hammersmith and Fulham council and called for other local authorities to follow its example.
But it warned: “Disabled people, family carers and others lobbied against the Coronavirus Act’s suspension of Care Act duties; and against denial of medical treatment; and told MPs that many people could die as a result of these policies.
“We fear that after the lockdown, many people will be found dead in their homes from lack of food/water and care.”
*Links to sources of information and support during the coronavirus pandemic include the following:
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