Today we published new research which shows families feel abandoned and have been left in lockdown without any support. Together with families we are demanding action and recognition from government.
The survey results based on more than 4,000 UK families with disabled children have been featured on the BBC TV and radio, Sky News and Channel 5 news today. This has helped us shine a spotlight on the difficulties families are facing during the Coronavirus lockdown so thank you to everyone who completed the survey and have helped with the launch today.
Lou, mum to Euan, aged 14 who has autism, described being left in lockdown without support 'like living in a pressure cooker. It's constant and endlessly exhausting.'
Three quarters (76%) of families who did receive support before lockdown, have had all support withdrawn during lockdown.
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: "As many begin to emerge from lockdown, spare a thought for those left in it. Families with disabled children are crying out for support. Education support, therapies, respite and equipment have all been reduced or stopped. 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."
Here to help
The survey results also show that many parent carers need advice about caring for their child at the current time. That's why we are delighted to be able to offer 1-1 confidential phone appointments with our family support advisers for parents looking for a listening ear, reassurance and emotional support at this time.
If this sounds like something that you'd find helpful making an appointment is simple: Visit our Eventbrite booking page, choose the day (morning, afternoon or evening), and when you register choose the time slot you want. Appointments are regularly updated here and are subject to availability.
Una Summerson Head of Campaigns Contact, the charity for families with disabled children