“On the verge of collapse”: parents of disabled children are on fire 24 hours a day

“On the verge of collapse”: parents of disabled children are on fire 24 hours a day

Parents of severely disabled children are "forgotten families on the brink of collapse" and warn that they are in urgent need of support as they are almost exhausted.

Families with vulnerable children provide complex care 24 hours a day without respite or outside help. Many have had to cancel home care services due to the lack of PPE or sufficient testing. Others find it difficult to cope after the cancellation of respite and outside care services.

"There are not enough staff with special educational needs at my daughter's school to send her away," said Jean Wilson, mother of Emily, 17, who has severe learning disabilities. and difficult behavior.

"My husband and I have to take care of her 24 hours a day without help because the caregivers of the local authorities have been put on leave, when no idea has been given to provide direct support," he said. -he says. she said. "It put enormous emotional and physical pressure on an army of invisible parent-parents."

Wilson runs New Hope Worcester, a charity offering respite to families with children with disabilities. "We had to close our doors to families like ours," she said. "We are all exhausted, constantly anxious, overwhelmed and desperate."

There are approximately 1.1 million children with disabilities in the UK [pdf]. In England nearly 87,000 children and young people suffer from life-threatening or life-threatening illnesses.

Amanda Batten is CEO of Contact, a charity for parents of children with disabilities, and founder and president of Disabled Children’s Partnership, a coalition of over 70 organizations. She said there has been "a large increase in demand for our services and support" since the start of the Covid-19 crisis.

"Many of these families, many of whom are single parents with other children, were only managed before the crisis because they had a small army of individual or individual care. They now have to do everything by themselves ., "She said." Many families of children with disabilities report an increase in mental health needs for themselves and their children. "


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

"One problem is that we slip into the net for support: we have to isolate ourselves in the most extreme measure, but because we are not the" extremely vulnerable list ", we do not get any help that would be provided to us ", she said. . . “We are all out of breath, mentally and physically. We are totally locked up. There is no way out. We are the forgotten families on the brink of collapse. "

Caroline, who is not her real name, has a 29-year-old daughter who is quadriplegic, has cerebral palsy, cannot speak, is deeply deaf and needs 24-hour care.

"We usually have a team of eight caregivers who come to our house throughout the week, but now it's just us," she said. "Because the very premature birth of our daughter means that her lungs are severely underdeveloped, we think that if she were to contract the virus, she could not survive. But that means that we cannot afford to contract the virus for fear of passing it on.

"We have been completely isolated since early March," she added. "We are trapped in our house, alone and we seem to be here for the next 12 to 18 months. The gnawing anxiety associated with physical isolation is emotionally exhausting. I don't know how long we can cope. "

Emily Holzhausen, Director of Policy and Public Affairs for Carers UK, said: "This is a major problem among families who have contacted us for help in the past few weeks. These parents have to look after their children 24 hours a day. There is no more help. It is a desperately difficult situation. "

A government spokesperson said, "Schools and early childhood facilities remain open for them, where it is appropriate for them to do so."

“Decisions concerning the education of children with complex needs must be taken jointly by local authorities, schools and parents. When it's not appropriate, we support parents at home, including by posting a list of online learning resources for children with SEND [special educational needs and disabilities] and with additional funding worth 26 £ 4 million to include support for families of children with disabilities. "


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