‘Brink of collapse’: parents of disabled children buckling under 24-hour care

“Parents of severely disabled children, are the “forgotten families on the brink of collapse” and are warning that they urgently need support as they are at the point of burnout.

Families with vulnerable children are providing complex, round-the-clock care with no respite or outside help. Many have had to cancel home carers’ services because of the lack of sufficient PPE or testing. Others are struggling to cope after respite and outside care services were cancelled.

“There’s not enough special educational needs staff at my daughter’s school to send her back,” said Jean Wilson, the mother of 17-year-old Emily, who is autistic, with severe learning disabilities and challenging behaviour.

“My husband and I have to look after her 24 hours a day with no help because the local authority carers have been furloughed, while no thought has gone into giving direct support,” she said. “It has put a huge emotional and physical strain on an army of unseen parent-carers.”

Wilson runs New Hope Worcester, a charity offering respite for families with disabled children. “We’ve had to shut our doors to families just like ours,” she said. “We’re all worn out, constantly anxious, overwhelmed and desperate.”

There are around 1.1 million children in the UK with a disability . In England, there are nearly 87,000 children and young people with life-limiting or life-threatening conditions.

Amanda Batten is CEO of Contact, a charity for parents of disabled children, and founder and chair of the Disabled Children’s Partnership, a coalition of more than 70 organisations. She said there had been a “vast increase in demand for our services and support” since the Covid-19 crisis began.

“Many of these families, many of whom are single parents with other children, only coped before the crisis because they had a small army of two-to-one care, or one-to-one care. They’re now having to do it all on their own,” she said. “A lot of families of disabled children are reporting increased mental health needs on the part of both their children and themselves.”

Katie Clarke, executive director and co-founder of Bringing Us Together, a community for parents of children and young people with a variety of special educational needs and other disabilities, said parents were exhausted. “They’re in a high state of anxiety. Many are unable to even sleep. They’re worried about the future,” she said.

“One problem is that we slip through the net for support: we have to self-isolate ourselves to the most extreme extent but because we are not the ‘extremely vulnerable list’ we get none of the help that would give us,” she said. “We’re all at our wits end, mentally and physically. We’re totally locked in. There’s no escape. We’re the forgotten families on the brink of collapse.”

Caroline, not her real name, has a 29-year-old daughter who is a quadriplegic, has cerebral palsy, cannot speak, and is profoundly deaf and requires round-the-clock care.

“We usually have a team of eight carers coming into our home throughout the week but now it’s just us,” she said. “Because our daughter’s very premature birth means that her lungs are seriously underdeveloped, we believe that if she were to contract the virus, she might not survive. But this means that we can’t afford to contract the virus for fear of passing it on to her.

“We’ve been in complete isolation since the beginning of March,” she added. “We are trapped in our house, alone and look like being here for the next 12 to 18 months. The gnawing anxiety associated with being in physical isolation is emotionally draining. I’m not sure how much longer we can cope.”

Emily Holzhausen, director of policy and public affairs at Carers UK, said: “This is a major issues among families who have been contacting us for help over the past weeks. These parents are having to care for their children around the clock. All their help has gone. It’s a desperately challenging situation.”

A government spokesperson said: “Schools and early years settings remain open for them to attend where it is appropriate for them to do so.

“Decisions over whether children with complex needs should attend school must be taken by local authorities, schools and parents together. Where that is not suitable we are supporting parents at home, including by publishing a list of online learning resources for children with SEND [special educational needs and disabilities] and with additional funding worth £26.4m to include support for families of disabled children.”