Learning-disabled people "barely a footnote" in Covid inquiry report, experts say

People with learning disabilities were ignored during the Covid-19 pandemic and are still being overlooked, according to experts at the University of Birmingham who gave evidence to the UK Covid inquiry.

The inquiry's report on adult social care, published this week, found that the care sector had been treated as an afterthought. But Professor Richard Hastings, of the University of Birmingham, said adults with learning disabilities and their families were the "missing voices" in the report.

"An afterthought, now barely a footnote"

Professor Hastings, director of the university's Intellectual Disabilities Research Institute, and Professor Chris Hatton, of Manchester Metropolitan University, wrote an expert report for the inquiry based on extensive research into the experiences of people with learning disabilities and their family carers during the pandemic.

"The lives and experiences of adults with learning disabilities and their families during the Covid-19 pandemic are the missing voices in the latest UK Covid-19 Inquiry care module report," Professor Hastings said. "The expert report that Professor Chris Hatton and I authored for the inquiry suggested that people with learning disabilities were an afterthought during the pandemic. They are now barely a footnote in the inquiry's care module report."

"Our recommendation is that people with learning disabilities should be proactively recognised as a priority group in all recommendations and future planning. Families, especially of individuals with profound learning disabilities, were clear that they were abandoned during the Covid pandemic. That cannot happen again."

Most were not in care homes

Professor Hatton said it was disappointing that the report focused almost entirely on residential care homes for older people. Most adults with learning disabilities are supported in family homes, supported living or their local communities rather than in care homes.

"During the pandemic social care services failed many people with learning disabilities," he said. "We must stop ignoring people and finally learn lessons from their experiences. If we get it right, we can build a more resilient, inclusive and compassionate system that protects people's rights, wellbeing and participation in their communities, even in times of crisis."

"No one would notice"

The professors' research also informed a new report from the charity Learning Disability England, called How We Survive and Thrive, published to coincide with the inquiry's findings. It was written by a group of commissioners with learning disabilities and family carers, drawing on their own experiences of the pandemic.

It describes disruption to essential support, barriers to healthcare, long periods of isolation and the loss of chances to take part in community life. One family carer told the commission they lived in constant fear that if they died "no one would notice", and the person they cared for would be left without support. Others described feeling "isolated, cut off and forgotten about" as services closed.

The commissioners said they had felt bored, depressed, isolated and "heartbroken" when support was not in place. Their report sets out recommendations to make sure people with learning disabilities are not left behind in future emergencies, and an easy-read version has been published alongside it.

People with learning disabilities were several times more likely to die from Covid-19 than the general population during the first waves of the pandemic, according to official figures, a gap that campaigners have long argued should have made them a priority.