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Parents of disabled children ‘exhausted by lack of support’ during lockdown

‘Non-stop’: Dolores
Cowburn, whose
daughter Tilly has
Rett syndrome,
gets no break

FAMILIES with disabled children say they have been abandoned during lockdown, with more than three-quarters losing all support services entirely.

A survey by the Disabled Children’s Partnership (DCP), a coalition of charities, found nearly half of parents have seen their youngsters’ health deteriorate and one-fifth are heading into debt.

And the struggle to provide round-the-clock care has left most with worries about their own mental health.

‘It’s like living in a pressure cooker,’ said Lou Paget, whose 14-year-old son Euan has autism spectrum disorder.

‘We now have no respite and no break from 24/7 care needs.

‘Plus we are expected to home- school two children, including modifying home-schooling for a visually impaired child. We are all completely exhausted.’

Half of parents whose children need the most intensive interventions have also seen them entirely cease, according to the survey. Dolores Cowburn’s three-year-old daughter, Tilly, has Rett syndrome that affects communication, mobility and development. She said: ‘No one seems to want to have the debate or talk about those with children with complex needs or how they’re dealing with it.’

‘There is absolutely no break from caring. It’s really, really intense and quite overwhelming and you’re just left to it. It isn’t just home-schooling; it’s living, breathing physio, communication, lifting, feeding, stimulating, interaction, trying to keep yourself sane, home-school another child. The list is non-stop and endless.’

Many affected families are still having to shield as lockdown measures ease for others. But nearly two-thirds have been confused by the government’s information on shielding.

DCP chairwoman Amanda Batten said: ‘Our survey reveals that families of disabled children feel abandoned in lockdown, dealing with intense pressures as support is stripped bare. Families have filled this void for 12 weeks but it is neither ethical nor sustainable for much longer.

‘The government needs to start planning now for enhancing funding for disabled children’s health and social care.’