single mother has told how she was forced to quit her job to look after her disabled daughter after support collapsed during the pandemic.
Emma Gardener, based in Watford, said she quit her role as a director at a top advertising agency to look after Dotty, who was born with STXBP, a rare disorder which stunts mental development and can cause epilepsy.
Ms Gardner, who now dedicates her time campaigning for more inclusivity, believes disabled communities are the “hidden victims” of the pandemic.
Her comments come as the treatment of the community since coronavirus took hold undergoes intense scrutiny.
During the first lockdown up to 76 per cent of families with disabled children had all care support withdrawn, including physio and speech therapy, and 80 percent of parents reported their mental health had deteriorated, according to a survey by the Disabled children’s partnership (DCP).
It was during this period, when schools were completely shut, that the challenges faced by Ms Gardner were exacerbated.
“Dotty is seven-years-old but her development is closer to that of a two year-old which means she needs constant one to one care”, she told the Standard.
The 38-year-old, who started her own diversity business, Born Equal, after quitting her job, must lift, feed, bathe and dress her daughter as she is unable to manage on her own.
The pressures of balancing a demanding job and taking care of Dotty full-time sent her into a state of depression.
“A lot of Dotty’s provisions came from her specialist school because that is where she had a physiotherapist, speech and language therapist, her occupational therapist along with the majority of the equipment that she needs to work and develop in those areas but we couldn’t access that because of the school closures.
“I had additional carers that I was paying for out of my own pocket but that all went away during lockdown because a lot of them were shielding or couldn’t work because of restrictions,” she added.
At the time disabled children were mentioned just twice in all Downing Street press conferences and only after questions from the press and public, according to Sam Carlisle, campaigner and founder of Comms Communication.
And a pre-Covid 2019 survey by the DCP, an umbrella group of 75 leading charities, found that only four per cent of parent carers felt they received the right support to safely care for their disabled children.
Asked her thoughts on what the government should do better moving forward, Ms Gardner said: “I wonder, if we had a more inclusive, compassionate and evolved government and lived in a society that reflected that, whether the death toll among disabled people would be so high.
Ms Gardner said when care and support provisions are “taken away” from families like hers it leaves “a massive hole” and although she is relieved schools will be opening she hopes for more “intentional and sincere dialogue with parents of SEN kids and disabled people on an ongoing deliberate basis to improve things.”
A Department of Health and Social Care spokesperson said:“Unpaid carers continue to perform an incredibly important role and throughout the pandemic we have taken action to support them.
“This includes funding through a number of charities, tailored guidance, and ongoing to work to help carers access the support they need, with many prioritised for vaccination.”