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

The national survey of one thousand families caring for their loved ones at home, reveals that three quarters (75%) of families who have had their support and care reduced during the pandemic received no advance information, with 1 in 3 (34%) still waiting for it to be reinstated.

The reduction in support has led to families denied access to vital local services, such as therapies and medical treatment (58%), day centre and respite services (40%) and care support at home (31%). Without this vital support, families have been left to provide care alone, 24/7, which can include tasks such as lifting, feeding, personal care and physiotherapy.

Half of all (51%) families believe the government have failed to provide enough guidance and support, and 1 in 2 say they fear they couldn’t cope if there was a second lockdown. 

20-year-old Faith Tasker, from Liverpool, has complex disabilities, which include being autistic, blind and hearing impaired. When the lockdown begun, the day service and respite support she receives stopped and she was left in the care of her family 24/7.  Seven months later, and the support is still to be reinstated.

“Providing care with no respite is tough”, says Faith’s mother, 60-year-old Jane Tasker, “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.”

“It was hard from the beginning” says Lynne Earth (53), mother of 24-year-old George, who has complex needs. “George has high support needs, which means we have to do most things for him, including washing, feeding, personal care and entertaining”

 

Thankfully, the Peterborough based family, are now having their support reinstated, but Lynne feels families like hers have been largely forgotten during the pandemic:

“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.”

 

There are over 1.7m disabled adults cared for by family in England and Wales, and more than a third (38%) overall have had their support and care reduced during the pandemic. With the grim economic outlook, nearly 1 in 2 families (46%) now fear cuts to services for disabled people.

Sense is calling on Government to provide Local Authorities with sufficient funding, resources and support, so that families can have their care and support reinstated in full.

Sense Chief Executive, Richard Kramer, said:

“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.

“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.

“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 asking supporters to sign their letter, calling on the Secretary of State for Health and Social Care, Matt Hancock, to take action to secure and reinstate community services and support, such as short breaks for disabled adults and their families. www.sense.org.uk