Parents of disabled children feel abandoned in lockdown and demand action from government

Monday 15 June 2020

Today as part of the Disabled Children’s Partnership, we are publishing new research which shows families have been #LeftInLockdown without any vital care or support.

The survey of more than 4,000 UK families with disabled children shines a spotlight on the difficulties they are facing during the Coronavirus pandemic.

Key findings:

  • 76% of families who did receive support before lockdown, have had all support withdrawn during the Coronavirus pandemic.
  • Most parent carers (72%) are providing a lot more care compared with the amount before lockdown. Just over two thirds (68%) said non-disabled siblings were also providing a lot more care 
  • Half of parents whose children had been receiving crucial therapies or other extra support have seen this stop. 86% say lockdown has had a negative impact on their disabled children’s learning and communication
  • The majority (70%) of parents whose children were eligible for a school place had not taken them up; mainly because of concerns about their children’s health or because the right provision was not available

Families have filled the void

Contact Chief Executive and Chair of the DCP, Amanda Batten, said: “Our survey reveals that families of disabled children feel abandoned in lockdown, dealing with intense pressures as support is stripped bare, during the Covid-19 pandemic.

“As many begin to emerge from lockdown, spare a thought for those left in it. Families with disabled children are crying out for more support. Education support, therapies, respite and equipment have all been reduced or are inaccessible. Families have filled this void for 13 weeks but it is neither ethical nor sustainable for much longer.

“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.”

Responding to the survey families say their biggest concerns are the acute lack of support with no end in sight, what would happen if they got ill and couldn’t care for their child and the impact of the lockdown on their child’s mental and physical health, as well as behaviour.

“Where are we in the exit plan?”

Ilham Elfenne, volunteer for Contact’s By Your Side hospital project and mum to Nada aged 11 who has autism, said: “Before lockdown we had a wonderful carer who came to the house to support Nada, but she has not been for 14 weeks by mutual agreement because of concerns about infection.

“Nada has not been in school since lockdown. She has a place, but the school is running from a different location and is an entirely different set up with different teachers. Nada needs consistency and routine, so would not be able to cope with the changes. And of course I am worried about infection because how do you keep children like Nada safe? She does not understand about social distancing, she can’t wear a mask.

“We want recognition and we want specific advice for disabled children and their families. Where are we in the exit plan? Restrictions are easing for others but not for us. We need confidence that we are going to be safe, yet we are not even mentioned.”

Families and the Disabled Children’s Partnership demand that 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-soundroute mapfor their eventual return to school and society
  • Provides resources, acknowledging health, social care and education funding was already inadequate before the pandemic. 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.

How you can help

To get involved in the campaign we are asking families and supporters to make a noise about it on social media. Share your experiences about life in lockdown with your friends and your local MP to raise awareness of the siutation.

Please share content from the DCP social channels tomorrow:

https://www.facebook.com/DCPcampaignor https://twitter.com/DCPcampaign

We are using the hashtag #LeftInLockdown

The Disabled Children’s Partnership is a major coalition of more than 70 organisations campaigning for improved health and social care for disabled children, young people and their families. It is chaired by Contact’s Chief Executive Amanda Batten.