Grassroots disabled people’s organisations (DPOs) have expressed their frustration at being “shut out” of the Covid public inquiry.
The UK Covid-19 Inquiry has decided that 14 DPOs will not be allocated status as “core participants” in two crucial parts of the inquiry, a decision that is likely to be replicated across the whole inquiry.
Instead, just four of the UK’s larger, national DPOs have been given core participant status for one of the two modules for which arrangements have already been decided by the inquiry.
Disability Rights UK, Inclusion Scotland, Disability Action Northern Ireland and Disability Wales will be treated as core participants for the second module, on key UK decision-making and “political and administrative governance”.
Oral evidence hearings for this module are scheduled to take place next summer.
But another 14 DPOs – including The Alliance for Inclusive Education, Disabled People Against Cuts (DPAC), Inclusion London, Disability Positive, WinVisible, and Greater Manchester Coalition of Disabled People (GMCDP) – had their applications to be treated as core participants for the inquiry’s second module rejected.
If they want to provide evidence for this module, they will have to feed it through one of the four national DPOs, which some disabled activists view as being closer to the establishment.
The grassroots DPOs will also not be allowed access to confidential documents that will be shared by the inquiry with the four national DPOs.
None of the DPOs – including the four national organisations – have been granted core participant status for the first module, which will examine the UK’s state of preparedness for the pandemic.
Individuals or organisations with a “significant role or interest” in the inquiry’s work can apply for core participant status (PDF) for a particular module, which allows them to access evidence, make opening and closing statements at inquiry hearings, and suggest lines of questioning to the inquiry’s barristers.
Bob Ellard, a member of DPAC’s national steering group, said: “The inquiry can remain in its comfort zone by only admitting establishment-linked bodies into core participant status – bodies that can be relied on not to ask too difficult questions or rock the boat too much.
“Grassroots organisations that work for the interests of disabled people at the sharp end have been firmly shut out.”
A GMCDP spokesperson added: “As disabled people were the majority of deaths from Covid we think the inquiry is failing to appreciate the severity of the impact on our community and accord us the proper respect.”
Lynne Turnbull, chief executive of Disability Positive, in Cheshire, said: “Whilst I was disappointed that we were not granted core participant status for module two of the inquiry, I welcome that four DPOs have been, which will ensure that the voice of disabled people and our organisations is heard.
“Disability Positive is a member of DR UK, who are one of the organisations named as a core participant. We would therefore ideally be able to feed in our experiences through them.
“However, without agreement to a confidentiality circle for inquiry documents, this will prove difficult.
“As an organisation, we took on various vital new roles during the pandemic, including distributing PPE [personal protective equipment] for use by personal assistants, making wellbeing calls to disabled people, supporting people to understand vaccine and face-covering information and providing advice during a time of great confusion.
“Taking on these new roles had a substantial impact on us and was a direct result of government policy creating a vacuum into which we had to step to protect the wellbeing and lives of disabled people.
“These experiences are important and without the confidential information from the inquiry being shared with us, it is difficult for us to contribute as much as we otherwise could.”
WinVisible is another grassroots DPO that has expressed frustration at the inquiry’s decision.
Claire Glasman, co-ordinator at WinVisible, said it was unacceptable that the inquiry had shut out all DPOs from the first module, on the country’s state of preparedness, even though “emergency planning is the first stage, where our survival is at stake and where our survival was dismissed”, and that only the four national DPOs had been granted core status for the second module.
She said the 14 grassroots DPOs had joined together “as a way of holding the government, former health secretary Matt Hancock and others accountable for the thousands of deaths which could have been prevented”, and their experiences would now need to be represented by the four national DPOs and outside the inquiry.
She said: “Many thousands of people, disproportionately women and people of colour, died from Covid being seeded into care homes, when the government already knew about transmission.
“Many thousands more died from neglect under cover of Covid: at home and in care homes and hospitals.”
WinVisible member Micheleine Kane, from Scotland, said: “As a bereaved daughter whose disabled mother with multiple sclerosis was left to starve in a care home and was frightened into not going to hospital, I am one of many let down and robbed of our family members due to the measures enforced by UK and devolved governments.
“I wanted my mother to come and live with me, but the care home said no, she couldn’t leave because of lockdown. I was only allowed window visits.
“As a result, my mother died a slow, painful, inhumane, lonely death at their hands.”
Glasman said DPOs including WinVisible had helped to widen the terms of the inquiry to include the disproportionate impact of Covid measures on disabled people, women, people of colour and others covered by equality law.
She said they would carry on pressing for the government to be held to account in the inquiry for deprioritising social care, and for the discriminatory treatment decisions made within the NHS using critical care guidelines and the issuing of “do not attempt resuscitation” notices without the consent of disabled patients or their families.
She said: “We are with the bereaved families who fear the inquiry will be another cover-up, after they were barred from testifying directly to it and were relegated to a ‘Listening Project’.”
A spokesperson for the inquiry said: “The inquiry will be looking at the impact of the pandemic on inequalities, including disabilities, throughout its work.
“The inquiry has not announced all of its investigations yet. It will invite further applications for core participant status as it does so.
“Core participant status is only one way to take part in the inquiry.
“Others include providing evidence and participating in the inquiry’s listening exercise.”
The inquiry says that decisions on core participant status are made by its chair, Baroness [Heather] Hallett, following criteria set out in the Inquiry Rules 2006.
The inquiry said it does not comment on individual applications for core participant status.
Picture: A televised government Covid briefing
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