Left in Lockdown

As part of the Disabled Children’s Partnership (DCP) we are launching research which finds that's disabled children and their families have had vital care and support withdrawn during the coronavirus pandemic.

Over 4000 families with disabled children and young people told us that they were being #LeftInLockdown.

Mark Lee, Chief Executive of the Together Trust said:

“This survey reinforces what our families are telling us. Whilst the public is starting to leave lockdown parents of disabled children feel like they are being left behind. The lack of prioritisation for disabled children and their families from the government during the crisis has meant that families have spent 12 weeks in isolation without vital support. As members of the Disabled Children’s Partnership we are asking the Government to fund education, health and social support for these children and their families.”

Key findings

• 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
• For those who had previously received support, 76% have seen it stop
• 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
• Lockdown has led to some parents not seeking necessary medical health for their disabled children (44%), themselves or their partner (54%) or their non-disabled children (17%). Nearly half (45%) say their disabled children's physical health has declined and 54% say the same about their own health
• The majority (70-80%) report worsening emotional and mental health for both their children and themselves
• 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.
• The majority (64%) of parents were worried about how much home schooling they were doing with their disabled child and 32% said they were receiving no support specific to their child's needs from school; on the other hand, a quarter were getting good support
• 83% say the lockdown is having a negative impact on their disabled child’s friendships
• The lockdown is impacting on the statutory rights of disabled children - two-thirds going through an assessment process had seen it delayed; 43% of annual reviews had lapsed or been put on hold
• Families are facing financial pressures, through either, or both, a reduction in income (39%) or increased costs (61%). One in five (21%) said they will go into debt as a result

”The impact is huge: absolutely no break from caring. It’s really, really intense and quite overwhelming and you’re just left to it, no one seems to want to have the debate or talk about those with children with complex needs how they’re dealing with 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 and no one to help or make you feel like they actually care by checking on you.”

Families and the DCP demand that the government: 

Recognises and respects disabled children’s increasingly vulnerable situation during the pandemic

Prioritises disabled children and their families as the most in need

Produces a practical plan to 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. 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.

Get involved

You can get involved in the campaign in a number of different ways:

• Make a noise about it on social media using the hashtag #LeftInLockdown.
• Share your experiences about life in lockdown with your friends
• Write to your local MP and ask them to share our demands
• Share content from the DCP social channels - https://www.facebook.com/DCPcampaignor https://twitter.com/DCPcampaign

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 Amanda Batten.