Shaun Conway, nine, direct payment recipient, Surrey
‘Pay can be less than that earned by a shelf stacker’
Philip Conway says direct payments have been essential in securing additional care at home for his nine-year-old son, Shaun, who has severe learning and physical disabilities thought to have arisen from a rare condition.
While not yet formally diagnosed, Shaun is believed to have Marinesco Sjogren syndrome, which is characterised by balance and co-ordination problems, cognitive delay, and small stature. Blood tests are currently being carried out by an expert in the condition in California.
“We believe in the value of having extra help at home,” says Philip. “Direct payments as a process have given us the choice of who comes into our home and does very personal things with our son.”
He says the payments have also enabled Shaun to be included in a range of activities in the local community, such as attending Sunday school and going to the park.
Philip emphasises that direct payments, which he and his wife Keiko accessed with the help of the Surrey Independent Living Council, allow the family to exercise control. But he also believes that “huge improvements” to the process could be made.
“I would like to see more transparency on some of the rates that are paid,” he says. “I have heard anecdotally that some families have been given direct payments that allow them to pay rates that end up translating into a take-home pay that’s less than someone gets stacking shelves in a supermarket, and that is not the way to develop a strong care sector.”
He also believes that the social worker community should be trained to “actively sell direct payments”, and has called on the Department for Children, Schools and Families to develop a concerted programme to develop new providers.