Disabled children and their families have been abandoned during lockdown

Lockdown has been a difficult and worrying time for disabled children and their families. Familiar places are closed, there are new confusing rules, and routines have been disrupted.

At Sense, our charity, we are currently supporting around 1,500 children and young people who are deafblind or have complex disabilities through this strange new world. One of these families is Wendy Newbronner and her sons. The boys all have complex needs. Rhys, 18, is deaf and has a learning disability, autism and ADHD; Dean, 15, is profoundly deaf and has a learning disability, and Carter, 9, is also deaf and autistic. Talking about the impact of the pandemic, Wendy Newbronner said, “The services that you would usually have are not there and that is tough.”

According to a new survey by the Disabled Children’s Partnership, 76 per cent of parents like Newbronner have experienced a sudden break in the support they need to care for their disabled children. From getting assistance with personal care needs and accessing essential healthcare to managing pain or discomfort, parents of disabled children have been largely abandoned in lockdown. This has had a significant impact on families, with just under half reporting that their disabled children have experienced poorer physical wellbeing and nearly 80 per cent of parent carers saying that both they and their children have worsening mental health.

We are calling for action by government. There must be immediate recognition of the increasingly vulnerable situation faced by many disabled children and their families. The government must prioritise those most in need of support by producing a practical plan for disabled children, especially those with complex medical needs who are continuing to shield. If government does not listen and act now, it will have another crisis on its hands – a crisis of families breaking down under the pressure.

Health, social care and education funding was already inadequate before the pandemic. We have been highlighting the £1.5m funding gap in disabled children’s health and social care services for over a year. Additional funding is necessary not only to address the challenges created by this public health crisis, but also to tackle the existing inequalities for disabled children. Crucially, we need a route map so that disabled children and their families can return to school and their communities in a safe and supported way. Without a plan and the right support, we will see an increase in complex needs, mental health issues and the rising cost of more expensive interventions with families.

In the meantime, Wendy Newbronner and her boys are getting additional support from our specialist children’s services. They receive a weekly newsletter full of activity ideas and online resources. She can attend Zoom sessions to talk to specialist staff, and there are lots of projects that the children can watch and be part of. Rhys, Dean and Carter have also recently received sensory boxes, full of interactive sensory materials, toys and activities.

Disability charities are stepping up to support families during this difficult time, but these workarounds can’t last forever. Parent carers like Newbronner are just about managing, but they need to know that eventually they’ll have a break from their caring responsibilities. As Newbronner explains, “I think when you have three children with special needs, you just get on with it. You’re the last person on the list.”

The government needs to step up so that families like Newbronner’s ar not the last on the list.

Richard Kramer is vice chair of the Disabled Children’s Partnership and chief executive of Sense, a national disability charity