HSE cuts rob mother of her hour a day home help for disabled son

Date Published: 21-Nov-2012

A mother caring for her severely disabled six-year-old boy has had her one hour a day home help cut without any assessment.

Aisling Keane says the decision to cut the five hours a week support from the Health Service Executive (HSE) has left her family in Kinvara totally devastated.

Conor has the extremely rare hereditary disease known as Peters-plus syndrome which is characterised by eye abnormalities, short stature, developmental delay, cleft lip and sometimes cleft palate.

Conor needs 24-hour care and Aisling used the home help to get on top of household chores in a busy house which includes three other children, 14-year-old twins and an eight-year-old daughter.

“It was a lifeline to us. It was an hour in the morning when the assistant helped me clean up, do laundry and generally tidy up while I was looking after Conor. He has very intensive needs. He needs peg feeding, because of his muscles he’s not the same as another child to dress or lift or wash. He doesn’t sit, walk or talk,” she explained.

When she was first assessed three years ago, the HSE approved the family for ten hours home help a week. That was then cut to eight and it has been five hours for the last two years.

“They didn’t come back and assess us. She just rang and took the hours over the phone. She was trying to make out I was lucky to have had it so long. She said something about an elderly couple more in need of the hours. But she was here when he was three years old. He’s a different child now, he’s getting harder, I’m getting older and I feel the little bit of help I get is my lifeline.”

See full story in this week’s Connacht Tribune.