Disabled people receiving care were ‘ignored by design’ during the pandemic, Covid inquiry hears

Four national disabled people’s organisations (DPOs) have told the Covid inquiry that people who receive care and support were “ignored by design” during the pandemic.

The inquiry heard on Monday that there were more than 43,000 deaths involving COVID-19 in care homes across the UK between March 2020 and July 2022, although there were no figures given for how many disabled people died in their own homes while receiving care services.

The inquiry also heard that, during the first two peaks of the pandemic, before vaccines became widely available, people with learning difficulties were seven to nine times more likely to experience a COVID-19-related death than people without learning difficulties.

And more than a quarter of all deaths from COVID-19 in 2020 were in people with dementia, even though they only made up two per cent of the total adult population.

Disability Rights UK (DR UK), Disability Action Northern Ireland, Disability Wales and Inclusion Scotland have together been granted “core participant status” in module six of the UK Covid-19 Inquiry, which is examining the impact of the pandemic on the adult social care sector across the UK.

Their opening statement for module six was delivered on Monday by barrister Danny Friedman, from Matrix Chambers.

He told the inquiry that the pandemic saw care settings become life-threatening, while “care services to sustain everyday basic quality of life were withdrawn”.

He highlighted how the Scientific Advisory Group for Emergencies (SAGE), which provides advice to government during emergencies, stated in May 2022 that no UK country was able to “routinely identify who is resident in care homes, who is receiving social care at home, and who works in or visits a care home or a person’s home”.

These data weaknesses meant the “recipients of care, the way they live, and the way that many of them died, was ignored by design”, said Friedman.

The DPOs’ opening statement said that care staff were allowed to move from care setting to care setting, spreading the virus, because those in charge knew the system would “collapse” if staff were forced to work only in one location.

Friedman said: “Care homes would go under. People would be abandoned. It was decided that the lesser of evils was hazardous movement of staff.”

The DPOs also highlighted how the “very first thing” the UK government did in the pandemic was to “legislate to take their rights away” under the Care Act.

But Friedman said that only eight local authorities in England lodged reports to show they were operating under these emergency care laws, even though the evidence showed there were “vastly reduced services across the country”, which meant local authorities must have “embarked on mass violations of the law”.

He said: “Some local authorities reduced their services to basic life and limb protection, social contact services were drastically cut, leaving people with dementia, learning disabilities and learning difficulties and mental ill-health totally isolated for long periods.

“The singular benefit of easements was that the law required reasoned, recorded, and open decision-making about withdrawal of services and disclosure of that fact to central government, but across the system, that is the one thing that local authorities near uniformly appear not to have done.

“Government then helped to misrepresent the human cost by finding false consolation that only eight reports were made.

“Rather than taking steps to enforce the law, the result is one of the singularly worst failures of accountability, and indeed illegality, across the period.”

The DPOs also highlighted that the government had focused on care homes and not domiciliary or supported care settings when it thought about issues such as providing personal protective equipment, testing for the virus, and getting hold of food.

Friedman said: “All these things were afterthoughts, grafted on to government responses far later than for hospitals and residential settings, if at all.”

The inquiry had heard earlier that its module six investigation had gathered more than 200,000 pages of evidence.

The hearings will last five weeks, and about 55 witnesses will give oral evidence.

Nearly 47,000 people have shared their experience of the care sector during the pandemic with the inquiry’s Every Story Matters listening exercise, the inquiry heard.

After the hearing, Georgia Bondy, who is working for DR UK on the inquiry, said: “The government needs to take responsibility for the fact that its lack of planning, consultation and care is part of the reason so many disabled people receiving care died and suffered during the pandemic.”

Rhian Davies, chief executive of Disability Wales, said: “Curtailing disabled people’s rights under the Social Services and Wellbeing (Wales) Act (2014) was one of the earliest decisions taken by Welsh government at the outset of the pandemic and paved the way for Wales experiencing the highest death rate from Covid-19 amongst disabled people in the UK.”

And Nuala Toman, head of accessibility at Disability Action Northern Ireland, said: “The pandemic exposed a brutal truth: disabled people were not only forgotten, they were disregarded through planning and service design failures.

“The UK and Northern Ireland’s fragmented and underfunded care system, combined with institutional ableism, led to preventable deaths and trauma.

“Unless our governments act now, we are knowingly walking into the next crisis with the same failures.”

Heather Fisken, chief executive of Inclusion Scotland, said: “If there was ever any emergency planning around these vital services and supports, disabled people were unaware and not involved.

“As a consequence, tens of thousands of disabled people lost vital support, often overnight, and were put at increased risk of contracting COVID.

“Today, some still don’t have the support they had prior to the pandemic.

“Governments need to take this learning forward and work with our organisations to ensure social care support is invested in and systems around it are strengthened and people-led so that this never happens again”.

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