Calls for government action as families ‘on edge of crisis’
Amaze, a charity in Brighton working to provide information, advice and support to families with disabled children across Sussex, is also a member of the DCP and said it has been hearing from several local families who are ‘on the edge of crisis’.
Many are now wanting their child with an Education Health and Care plan to return to school, but have been told this is not possible yet, it said, despite this group being a priority.
“We are working closely with local schools and other services to share what we are hearing they desperately need on the ground,” said CEO Rachel Travers.
“We are also hearing from many families who are really worried about their child’s (with SEND) worsening mental health – with increasing levels of anxiety and challenging behaviour.”
Families and the DCP are demanding that the government recognises and respects disabled children’s increasingly vulnerable situation during the pandemic and provides resources, acknowledging health, social care and education funding was already inadequate before the pandemic. They are also asking it prioritise 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.
Regular funded support with care and emotional and physical well-being needs at home or in the community is also needed, they said, and priority must also be given to those children who cannot attend school due to complex health conditions or who are needing to shield with their families.
Sussex-based charity Kangaroos, offers fun clubs,
activities and outings to children and adults with learning disabilities, all of which have been temporarily closed during lockdown.
CEO Peter Ackland said he is hugely aware of the challenges faced by families caring for children and adults with learning disabilities.
“We wholeheartedly welcome the report by the Disabled Children’s Partnership, which echoes the views of many of our members,” he said.
“We understand the impact of lockdown on those caring for a child or adult with learning disabilities and also the effect this is having on the young people themselves, and their friendships.”
Mr Ackland continued: “The report highlights the negative impact of lockdown on friendships, behaviour, emotions and mental health, as well as the strain caused by a lack of practical and financial help.
“At Kangaroos we have adapted quickly to offer a virtual programme to our members to enable our young people to see each other on Zoom calls, interact through online activities and attend virtual picnics.
“Many of the families we support are struggling without their usual routines and networks. We are doing everything we can to support them through signposting, regular calls to families and Zoom parent evenings.”
He said one of Kangaroos’ member’s parents told them they felt isolated, lonely, anxious, out of control, scared and emotional. They said life was not a walk in the park before lockdown, but with their child at school during the day and also able to attend clubs, outings and extra activities with Kangaroos, it was manageable. Now breaks are few and far between, they said, adding that they felt ‘constantly on edge’ and that their mental health was suffering and every day was ‘exhausting’.
Mr Ackland added: “It isn’t an isolated story. We hope this report will instigate action from the government to put in place better support for families going forward. They will need a lot more help during the transition period as lockdown eases, especially as children return to school.
“We are doing our best to continue to support our members at a time when our funding streams have been significantly cut. The landscape for funding is very difficult right now and more help from the government is essential.”