'It's a 24-hour-a-day job'

LDDA - The Liberal Democrat Disability Association <info@disabilitylibdems.org.uk>

'It's a 24-hour-a-day job'

May 21, 2007 4:56 PM

A £340m package to help families looking after disabled children has thrown the spotlight on the difficulties faced by carers. Parents at whom the funding is aimed described the challenges they confront every day.

Every night, Angela Murphy goes to sleep with her keys tucked deep inside her pillow. The autistic disorder with which her 16-year-old son, Conor, has been diagnosed means that he is in danger of harming himself if he leaves the house unaccompanied - as he is prone to try to do. And given that Conor may wake two or three times in the night, Angela, 40, cannot take any chances. "The hardest thing for me is the lack of sleep," she says. "He makes quite a lot of noise when he gets up, and in any case he needs constant supervision to make sure he's safe. It's a 24-hour-a-day job looking after him."

Because of his condition, Conor is unable to recognise when he might be in danger, and he has a tendency to play noisily at all hours of the day and night. The burden on Angela is a heavy one. But luckily for her, Conor spends two nights every fortnight at a respite centre near their home in Farington Moss, Lancashire. The regular breaks give Angela and her elder son, Thomas, 18, some time to themselves. Angela knows she is lucky because many parents in similar situations cannot make use of such schemes.

"The children benefit as well because their carers have more energy," she says.

Charities backing the Every Disabled Child Matters (EDCM) campaign say 100,000 families in the UK are providing substantial care to disabled children, and they cite research which suggests eight out of 10 are close to breaking point because of a lack of support. The government's new three-year package will provide 40,000 breaks for carers.

Parents welcomed the deal, but warned that accessing such services should not be a test of patience in itself. Lynn Lansdown, 46, from High Wycombe, Bucks, described an additional obstacle she had to face caring for her six-year-old son William, who has Down's syndrome: bureaucracy. When William was aged one, she spent two hours filling in a form applying for Disability Living Allowance (DLA) on his behalf, only to be told his difficulties were not "substantially in excess of his peer group". Lynn was astonished, as it was clear to her that William's twin sister Hannah, who does not have Down's, did not require speech therapy, physiotherapy, occupational therapy and regular medical assessments.

"I was astonished," she says. "I know they've got to check to make sure no-one's cheating the system, but surely it should be straightforward enough to give DLA to those who need it? We successfully appealed in the end, but I do worry that families who aren't as confident or as knowledgeable about the system will miss out."

Children's campaigners agree that providing services is not enough - that they have to be accessible too. "Families of disabled children face a daily struggle to live ordinary lives," said Steve Broach, EDCM campaign manager. The system has got to get better at meeting their needs."