Grace is a person – not charity fodder
A MOTHER has asked the HSE for €2,000 a year in direct funding for her daughter, who has Down syndrome, instead of having to avail of services via disability charities.
After a protracted struggle for ‘individualised funding’, Phyl Kennedy and her daughter, Grace Bruen, 25, were offered €11,000 but this would have to be administered by, and spent on charity services.
Phyl eventually agreed to accept a lower amount of €2,000 a year in order to avoid the obligation to deal with disability organisations, which she claims are part of a self-serving industry paid to ‘hide’ people with disabilities. The arrangement has yet to be finalised. In 2010, Phyl and her husband, best-selling crime novelist Ken Bruen, sought to enable Grace to buy a house for herself but Grace was prohibited from doing so under the Lunacy Act 1871 – archaic legislation that precludes ‘idiots’ and ‘imbeciles’ from such transactions.
They were therefore forced to buy a property next to their own home on Grace’s behalf, but this meant she couldn’t avail of a stamp-duty exemption for first-time buyers. The family named their own home Graceland – and the new house Disgraceland. The couple eventually were refunded with a cheque from Revenue. They then learned that people in receipt of disability allowance were not eligible for the JobBridge scheme. After lobbying for people with disabilities to be allowed apply for internships, Grace began working at Galway County Library, but was uncomfortable with being so closely supervised by someone from a charity that she was being followed into the toilet. Phyl said: ‘Direct funding poses a threat to these charities. It’s not in their interests. Our children serve them, not the other way around.’