Disabled children and their families have been left in lockdown with vital care and support withdrawn during the coronavirus pandemic, an extensive survey by the Disabled Children’s Partnership (DCP) – of which Together for Short Lives is a member – has found.
In 60 per cent of cases support has stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock.
Disabled children’s friendships, learning, communication, behaviour and mental and physical health have suffered. Parents already struggling before the pandemic, due to lack of support, feel locked out during lockdown, abandoned by society and fearful for their own physical and mental health.
Families and the DCP demand that 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.
”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."
Parent in DCP survey
Survey results
The Disabled Children’s Partnership is a growing coalition of more than 70 charities who have joined forces, working in partnership with parents, to campaign for improved health and social care for disabled children, young people and their families.
Its survey of 4,074 parents found that:
- 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, 60% 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
“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."
Amanda Batten, DCP Chair
Disabled Children’s Partnership Chair Amanda Batten said:
“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 inaccessible. Families have filled this void for 12 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.”
What parents said in DCP’s survey:
”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.”
”It’s like living in a pressure cooker. It’s constantly and endlessly exhausting.”
“Huge impact. 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 have no therapy intervention at all. This has been detrimental to my SEN child’s progress and health. We are all completely exhausted both physically and mentally.”
You can read the full report and DCP’s recommendations to government here.
As DCP put forward its demands to government, it wants to hear about your experiences of lockdown. Have you and your family been locked out and abandoned?
Please share your story on social media using the #LeftInLockdown hashtag, or by emailing disabledchildrens.partnership@mencap.org.uk
And why not let your MP know about our survey and your experiences by tagging them into your #LifeInLockdown social media posts. You can find their details here.
