What lockdown means for families with disabled children

When lockdown starts, all kinds of things stop. The first one, in March, was the worst time of my life as a parent, not because of my daughter’s severe disabilities, but because of the lack of support.

Elvi is 19. She has a mental age of three, sleeps four hours a night and can’t walk. She has to be showered, dressed, fed and physically moved around our home. I have learned so much from my beautiful, funny daughter. She works incredibly hard to achieve the smallest things. We were told Elvi wouldn’t live past two and that she was unlikely to speak. In the summer she said her first five-word sentence: ‘I want crisps please, Mummy.’

Through necessity, being Elvi’s mum has made me resilient and resourceful. But the pressure of caring in lockdown nearly broke me and thousands of other parents, and so this second national lockdown is terrifying.

The provision for disabled children was inadequate before anyone had heard of Covid-19. In 2018 The Disabled Children’s Partnership discovered a £1.5 billion funding gap between what was in our children’s legal documents — their education, health and care plans — and what was actually provided by government and local authorities. That meant inadequate schooling; a lack of vital therapies, respite care and equipment; and a constant fight for resources.

Last year a DCP survey found only 4 per cent of families felt they had enough support to safely care for their child. Nearly half of couples split, many citing the pressure of looking after a disabled child while simultaneously battling the system for support. Parents sacrificed work to become full-time carers. The bureaucracy around Elvi was so time-consuming and complicated I was also forced to give up my career. Friends who worked in the City, advertising, the law and the NHS have had to do the same.