New survey finds families caring for disabled adults feel forgotten during the coronavirus pandemic

A new survey by disability charity Sense has highlighted the experiences of families in the UK caring for disabled adults during the coronavirus pandemic, with over half (52%) saying the additional caring responsibilities they have had to take on has impacted their health and wellbeing. 

No warning 

The national survey of one thousand families caring for their loved ones at home reveals that three quarters of families who have had their support and care reduced during the pandemic received no advance information. One in three of these families are still waiting for support and care to be reinstated. 

Richard Kramer, chief executive of Sense, says: “Everyone has had their life affected by this pandemic, but few have had a harder time than the families looking after disabled adults over the last five months. Many haven’t had a break from caring and feel isolated and forgotten.

“Devastating cuts to their support have meant they have suffered greatly during the pandemic and are now at breaking point.”

The reduction in support has meant families are denied access to vital local services like therapies and medical treatments, daycentre and respite services, and care support at home. Without this support, families have been left to provide care along with no respite. 

During this time, families’ tasks have included lifting, feeding, personal care and physiotherapy. 

Half of all families surveyed believe the government have failed to provide enough guidance and support, and one in two say they fear they couldn’t cope if there was a second lockdown. 

Forgotten

When lockdown began, 20-year-old Faith from Liverpool, who has complex disabilities including being autistic, blind and hearing impaired, was left in the care of her family due to her day service and respite support stopping. Seven months after Faith’s support stopped, it is still to be reinstated. 

Faith (right) and her family

“Providing care with no respite is tough”, says Faith’s mother, Jane. “But the hardest thing is the lack of information about when the support will be reinstated, or even what the plan is. You feel like you’re chasing people for updates, and then getting fobbed off.”

Lynne, mother of 24-year-old George who has complex needs, says: “It was hard from the beginning, George has high support needs, which means we have to do most things for him, including washing, feeding, personal care and entertaining.”

The family has now had their support reinstated, but Lynne feels families like hers have been left behind during the pandemic, she adds: “Families like ours, those caring for disabled adults, have been largely forgotten during the pandemic.

“We’re going through this incredibly difficult time, and you just hear nothing. We don’t even seem to be recognised by government.”

Nigel, George and Lynne

There are more than 1.7million disabled adults cared for by family in England and Wales, and more than a third overall have had their support and care reduced during the pandemic. Now, with uncertainty around the country’s economic outlook, nearly one in two families fear cuts to services for disabled people. 

“Disabled people’s needs have largely been forgotten, and families have had to take on greater caring responsibilities, with their health and wellbeing suffering as a result,” reveals Richard.

“Government must take action to reinstate the care and support that families need such as short breaks. We need to see clear and increased communication with disabled people and their families, and sufficient funding, support and resources to Local Authorities to flexibly deliver care and support.”

Sense is now calling on the government to provide local authorities with sufficient funding, resources and support, so that families can have their care and support reinstated in full. 

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