Under Pressure: Families of Severely Disabled Children

Here’s an insightful article from the Guardian newspaper looking at the situation of families with severely disabled children. You can read the full article here.

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 [pdf]. In England, there are nearly 87,000 children and young people with life-limiting or life-threatening conditions.

You can read the full article here.