For 76% of families, support has stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock. This is according to the DCP #LeftInLockdown campaign, which 4,000 parents responded to.
Dalton Leong, Chief Executive of The Children’s Trust which is a founder member of the DCP and is the UK’s leading charity for children with brain injury said: “Our survey shows the stark reality for so many families in Surrey and throughout the country. We have a responsibility to be a voice for these families.
“Some families of disabled children feel abandoned in lockdown, dealing with intense pressures as support is minimal during the COVID-19 pandemic. Families with disabled children are crying out for more support. Education, therapies, short breaks and equipment have been reduced or are inaccessible. Families have filled this void for 12 weeks but it is not sustainable.
“As members of the Disabled Children’s Partnership, we are asking the Government to fund education, health and social care support for these children and their families.”
Sotanis Thomas is mum to 9-year-old Rhea, who has a brain injury as a result of a car accident. Rhea has epilepsy, can't talk and uses a wheelchair. Before lockdown she was attending school five days a week where she received specialist care, education and therapies.
Sotanis said: “We’re all exhausted. We have three other children and they’ve had to chip in to help out with Rhea’s care. We feel that she’s missing out on so much, by not being in school. She was really thriving with her therapies but we can’t continue that type of support at home, unfortunately.
She added: "My partner has had to go on anti-depressants at quite a high dose and sleeping pills since lockdown. And I really feel like I’ve lost any sense of self. I love being a mum, but being mum and carer 24/7 with no break has an impact on wellbeing and relationships.”
The DCP is demanding that Government: ‘recognises and respects disabled children’s increasingly vulnerable situation during the pandemic, and prioritises disabled children as the most in need.’
Families can get involved in this campaign by sharing their experiences on social media using the #LeftInLockdown hashtag. You can let your MP know about the survey by tagging them into your #LifeInLockdown social media posts.
The Disabled Children’s Partnership is a coalition of more than 70 organisations campaigning for improved health and social care for disabled children, young people and their families.