Coronavirus: Parents of disabled children feel abandoned

Parents of disabled children have been left without vital care and support during lockdown, a survey by the Disabled Children’s Partnership (DCP) has found.

Disabled children’s friendships, learning, communication, behaviour and mental and physical health have all suffered as more than three quarters (76 per cent) of the 4,074 UK families surveyed report that support has been withdrawn. Half of parents whose children had been receiving crucial therapies or other extra support say this has stopped.

The ‘#LeftInLockdown’ survey found that most parents (72 per cent) are providing a lot more care than they did before lockdown. Just over two thirds (68 per cent) of non-disabled siblings are also providing a lot more care.

Those families already struggling before the pandemic say that they now feel ‘locked out,’ abandoned by society and worried for their own physical and mental health. Worsening mental health for both their children and themselves was reported by 70 - 80 per cent of parents surveyed.

One parent said, ‘It’s like living in a pressure cooker. It’s constantly and endlessly exhausting.’

Another parent commented, ‘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 and no one to help or make you feel like they actually care by checking on you.’

The DCP, a coalition of more than 70 charities campaigning to improve disabled children’s services, and families are calling on action from the Government. They are demanding that the Government:

  • Recognises and respectsdisabled children’s increasingly vulnerable situation during the pandemic 
  • Prioritisesdisabled children and their families as the most in need 
  • Produces a practical planto support families caring for vulnerable children at home and a medically-sound ‘route map’ for their eventual return to school and society  
  • Provides resources, acknowledging health, social care and education funding was already inadequate before the pandemic. 

They say that disabled children and young people must receive regular funded support with care and emotional and physical well-being needs at home or in the community. Priority must be given to those children who cannot attend school due to complex health conditions or needing to shield with their families. 

DCP chair Amanda Batten said that many families of disabled children are dealing with intense pressure as ‘support is stripped bare’ during the pandemic. She is calling for people emerging from lockdown to think of those who remain in it.

‘Families with disabled children are crying out for more support. Education support, therapies, respite and equipment have all been reduced or inaccessible. Families have filled this void for 12 weeks but it is neither ethical nor sustainable for much longer,’ she warned.

‘The health and social care system was already in crisis, without the resources to support disabled children. It will be even more stretched in future. The Government needs to start planning now for enhancing funding for disabled children’s health and social care so that they are not left even further behind their peers.’

Lockdown is also impacting on the statutory rights of disabled children with two-thirds of children having assessment processes delayed and 43 per cent of annual reviews lapsed or put on hold.

Other findings include:

  • 70 per cent of parents whose children were eligible for a school place had not taken it; mainly because of concerns about their children’s health or because the right provision was not available.
  • 64 per cent of parents were worried about how much home schooling they were doing with their disabled child
  • 32 per cent said they were receiving no support specific to their child’s needs from school but a quarter reported that they were getting good support
  • Families report facing financial pressure through either, or both, a reduction in income (39 per cent) or increased costs (61 per cent) with 21 per cent saying they will go into debt as a result.

Responding to the report, Ian Noon, head of policy at the National Deaf Children’s Society, said, ‘This survey shows the impossible battle that many parents of disabled children face on a daily basis. The support these children receive is crucial, yet despite the best efforts of many professionals, families are being left to cope alone.

‘The Government has shown during the coronavirus pandemic that it can introduce radical changes in a matter of days. Moving forward, we will need that same innovation, ingenuity and urgency to make sure every child gets the support they need and the future they deserve.’

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