Through our Forgotten Families campaign we’ve been highlighting the experience of Jane’s family, who’ve been struggling to support their 20-year-old daughter Faith throughout the pandemic without support. But we know Jane and Faith aren’t the only family dealing with the devastating impact of having their support withdrawn overnight. Our recent research, showed that 75% of those who had support withdrawn didn’t receive any warning before this happened, and a third of families are still waiting for any support to be reinstated.
From speaking to families, we’ve seen firsthand the wide reaching effects of community services shutting down and the difficult situation families caring for disabled adults have been left in during the pandemic.
Hearing from families
When lockdown began, 82-year-old Leila took on all caring responsibilities for her son, 57-year-old Fernando, who has complex disabilities, including deafblindness. Fernando usually receives support three days a week at our North London specialist centre and enjoys socialising there with other signers. With its closure Fernando quickly became upset not being able to attend the service or get support to communicate at home.
Fernando’s sister, Carole told us, “He wanted to visit the centre and we couldn’t explain to him why he couldn’t return to the service that he loves”, “He grew so frustrated and upset that he tried to kick the door down.”
When lockdown happened, the family’s support completely stopped
Similarly, Lynne and her family have been supporting their 24-year-old son George, who has complex needs, which include him not being able to speak and requiring a feeding tube. He lives at home with Lynne, and before the pandemic, attended a specialist centre every day and received in-home support.
When lockdown happened, the day centre closed, and the carer could no longer visit. Lynne was left to on take on all caring responsibilities and her husband, Nigel, took temporary leave from work to support, while also caring for elderly parents.
“All of a sudden, George’s health and wellbeing started to deteriorate. He was showing signs of major anxiety and then became very withdrawn.”
“When the letter finally arrived to confirm the centre would have to close, we were devastated.”
Kerrianne, 26 from Peterborough, has epilepsy and severe learning disabilities, and on weekdays usually attends our Peterborough specialist day centre. Kerriane’s family describe the centre as “a lifeline”, but when lockdown started, this lifeline was cut.
“We knew the news was coming, but when the letter finally arrived to confirm the centre would have to close, we were devastated”, says Kerrianne’s father, Mark. “It was only then we realised how important the centre is to us. It’s a lifeline that provides an environment for Kerrianne to have fun and develop, while we have some rest.”
“We don’t even seem to be recognised by government”
Across the country, families like Fernando’s, George’s, and Kerrianne’s are still waiting for community support to be reinstated.
George’s mum Lynne told us, “It feels like families like ours, those caring for disabled adults, have been forgotten during the pandemic…We don’t even seem to be recognised by government”.
Like many service providers, Sense has been forced to close many of its centres due to the lack of guidance from Government about how to stay open in a safe way. Now more than ever, Government needs to work with families, Local Authorities and providers of social care to immediately outline an alternative action plan for community services.
It’s more vital than ever that the government acts fast to reintroduce the community services that these families so desperately need. The threat of a second wave hangs in the minds of families, as well as concerns about further long term cuts to social care.
Stand with the Forgotten Families
Together with Jane’s family, we’re writing to the Secretary of State for Health and Social Care, Matt Hancock, to ask him to recognise the devastating impact the pandemic has had on disabled adults, and to find a way to flexibly reintroduce community services.
Stand with the Forgotten Families and support the campaign by signing the open letter to the Secretary of State for Health and Social Care.