Les Scaife is a retired bricklayer. He also cares for his son Brian.
Brian has severe learning disabilities. Like any parent, Les says that he has always tried to do the best for Brian, and for his sister who has no disabilities. He believes that the way Brian lives, and how he was brought up, should not just be dictated by the services offered by official bodies. The family, who now live in Banks in Lancashire, have moved home several times to find opportunities for Brian.
Dissatisfied by support
Finding appropriate care and support for Brian has not always been easy for Les. Until some years ago, Les relied on staff from agencies who had been commissioned by the local authority. Upset by changes in agency staffing and the number of staff absences, Les decided to take matters into his own hands.
Les persuaded the local authority to allow him to manage a direct payment to pay for Brian’s care. He used the money to pay for a personal assistant to give Brian regular care. As he didn't have to pay any additional costs to an agency, Les says he was able to pay the personal assistant more and get better quality care.
Les says: “You get good people who have the right skills and experience and who can build up a relationship. My son’s personal assistant goes with him to the pub or sports centre, and works more hours than he’s paid for.
“A friendship has built up between them. People with learning disabilities don’t know how to make friends, so this helps. Brian's social skills have improved because he’s not always around people with learning disabilities.”
Les also believes that having a personal assistant allows Brian to make his own choices. Les says: “He can do what he wants to do and not what he would have to do at a day centre. My son doesn’t want to play with crayons or do painting. Instead, he goes swimming or to the gym.”
Peer support
Although Les managed to set up direct payments for Brian, he says that it was not easy to manage the financial and legal issues that come with employing personal assistants. Les, along with four other local parents, set up a group called the West Lancashire Peer Support Network. Members of the network share their experiences of employing a personal assistant in order to help people in similar situations.
Les says: “We set up the group because there was a lack of knowledge. You’re given these payments, but then you think, ‘What happens now?’ There were no support mechanisms around.” The network has proved to be so useful that social workers often refer people to it if they need help managing direct payments.
The network has also built up a register of more than 150 personal assistants working in the area, many of whom can be called on to help people whose own personal assistant is ill.
Partners
Les also believes that his and Brian’s situation was transformed by a training course he attended. In 2000, Les received a letter which suggested he attend eight sessions organised by a group called Partners in Policymaking.
Les says: “It was the best letter I’ve ever had, short of one telling me I’d won the Pools. It struck a chord with me, so I went along.”
Partners in Policymaking runs courses that train families and carers to work with local authorities to improve services for them and the people they care for. Its eight sessions cover different aspects of disability and explain how carers can show their local authority how they can get a better service for the same money or less. For example, Les saved the local authority money by reducing the cost of paying agency staff.
Les says: “With the knowledge of legislation I got from the course, I was able to help other people.
“Instead of banging on the door of social services, I was able to approach them with a better way of doing things that would save money.”
Les now uses what he learned through the Partners in Policymaking courses to help other families through the local network, which he says now takes up his time six days a week.
Having learned enough to make key decisions about Brian’s care, Les now feels more secure about the future. Brian is known around the village where they live, and Les is confident that when he dies, Brian will be able to continue with the care he currently receives.
