The COVID-19 public inquiry must dedicate “time and resources” to hearing directly from disabled people themselves so that it can examine the “catastrophic” impact the pandemic has had on them, according to a leading user-led organisation.
Inclusion London spoke out this week after the government released the final terms of reference for the inquiry, following a public consultation.
The inquiry formally began its work on Tuesday (28 June).
Disabled people have described over the last two years how their rights were repeatedly breached during the pandemic.
A number of disabled people’s organisations (DPOs) took part in the consultation, which helped lead to some changes to the inquiry’s draft terms of references.
But Inclusion London said it still had concerns about whether the inquiry would investigate the reasons for the disproportionately high deaths, increased discrimination, isolation, loss of support and deterioration of physical and mental health among disabled people.
The inquiry says it will “examine, consider and report on” preparations for the pandemic and the response to it across England, Wales, Scotland and Northern Ireland.
Among its aims, it will consider any differences in the impact of the pandemic on disabled people, as well as those from other groups protected under the Equality Act.
It will also look at how decisions were “made, communicated, recorded, and implemented”, which should allow the inquiry to examine the government’s repeated failure to provide vital COVID-related information in an accessible format to Deaf and disabled people, including the refusal to provide an on-stage British Sign Language interpreter at televised ministerial briefings.
The inquiry will examine the “shielding and the protection of the clinically vulnerable”, which should allow it to probe why the government released new guidance for those seen as clinically extremely vulnerable to the virus less than 24 hours before the England-wide lockdown that began in November 2020.
Another area included in the terms of reference is the “discharge of patients” from hospitals and the use of “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions.
This will allow it to investigate the government’s decision – early in the pandemic – to discharge hospital patients into care homes without testing them for COVID-19, causing the loss of thousands of lives of disabled and older people.
And last year, the Care Quality Commission found hundreds of DNACPR decisions that had been put in place since the start of the pandemic and “had not been agreed in discussion with the person, their relative or carer”.
The inquiry will also examine “care in the home”, allowing it to investigate widespread failings that affected disabled people receiving direct payments to pay for their care and support at home.
These failings included many disabled people who receive direct payments to pay for their personal assistants being unable to access personal protective equipment in the early months of the pandemic, and how the government only published guidance to help people on direct payments more than five weeks after it had published guidance for the wider social care sector.
The inquiry will also look at how the government responded to the pandemic through the social security system and its support for “vulnerable people”, which should include the failure to offer recipients of so-called legacy benefits such as employment and support allowance the same £20-a-week benefit increase during the pandemic that was given to those on universal credit.
Svetlana Kotova, Inclusion London’s director of campaigns and justice, said: “The impact of the pandemic on disabled people has been, and continues to be, catastrophic.
“Six out of every 10 people who died were disabled.
“Disabled people have felt expendable as though their lives are less worthy, many lost support, struggled to access basic necessities, and others experienced increased levels of discrimination, exclusion and abuse.
“We jointly lobbied the inquiry together with other DPOs to expand the terms of reference to ensure that the impact of the Covid pandemic and the response to it on disabled people was fully investigated.”
She said Inclusion London welcomed the references to protected characteristics and the impact on those who receive social care support.
But she said that “considering the disproportionately negative impact Covid has had on disabled people, the inquiry must dedicate time and resources to hear directly from disabled people themselves.
“Not only that, but they must also investigate how the needs of disabled people were considered when policy decisions were made to fully establish the real reasons behind the disproportionately high deaths, increased discrimination, isolation, loss of support and deterioration of physical and mental health amongst disabled people.
“It cannot just be attempted to be explained away by stating that disabled people were already ill and/or vulnerable.
“Furthermore, we are disappointed that the inquiry will not consider the ongoing impact of Covid on disabled people.”
Disability Rights UK said it had taken part in the consultation and was “broadly pleased” with the changes that had been made to the terms of references.
Shaping Our Lives (SOL), which published research on the impact of the pandemic on disabled people in late 2020, said the terms of reference suggested some key issues could still be left out of the inquiry.
Becki Meakin, SOL’s involvement manager, pointed to the need to examine the funding that would enable DPOs “to build capacity and resilience for a future event, and probably to fund the ongoing demand [for their services] from the pandemic”.
She said she was concerned that disabled people were not explicitly identified as a priority group in the terms of reference.
She also questioned whether the inquiry would investigate how inclusive of marginalised groups the community responses to the pandemic were during the lockdowns.
And she said that disabled people needed to lead on any strategy to avoid similar disproportionate impact from future emergencies.
Meakin stressed that services were needed now “to support disabled people to regain confidence and independence, choice and control”.
She added: “We cannot wait several years for the findings of this inquiry.”
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