After a difficult first experience trying to live independently, Richard, who has Down’s Syndrome, now has an individual budget. The greater flexibility has given him and his family more freedom and control. Richard can now get out and enjoy his hobbies and interests, while his family have more opportunity to take breaks from caring for him.
Richard, 29, lives with his mother Dawn and his stepfather Gary at their home in Northamptonshire. He has Down’s Syndrome. Richard has some difficulties with his speech and his perception of time, which means he needs support with some aspects of day-to-day life.
Richard is in the third year of a City and Guilds Chefs in Training course, and has worked in a local café. He enjoys eating out, visiting the seaside and ten-pin bowling. He also loves dancing and musical theatre, and has performed on stage.
“Richard makes friends easily and sees the best in people,” Dawn says. “Although this can sometimes mean that other people take advantage of his trusting nature, and this makes Richard very vulnerable.”
For a time, Richard moved away from his family to live independently in his own flat, supported by visits from a care agency. However, Richard sometimes found that the carers could be dominating, which didn’t help him to live independently. He also felt that certain carers were not as punctual as they might be, and sometimes he was left alone at night, which caused Richard great stress. He also had difficulties with neighbours who bullied him. After 18 months it was clear that it wasn’t working out as Richard would have liked, so he moved back home with Dawn and Gary.
“Richard does not want to move out ever again after such a bad experience, particularly the bullying, so it is important that he receives support and help to pay for his support needs to keep him as independent as possible,” Dawn says.
Since moving back home, Richard has had an individual budget to pay for some of his support needs. Dawn found out about individual budgets through her work and saw that this would be an ideal way for Richard to flexibly manage his support needs in a way that is tailored to his individual needs.
Initially, however, things were daunting as there were new forms to fill in, and they also had to use their own money to pay for support while they were waiting for the budget to come through, which was not refunded until later.
However, new systems are now in place to help people complete their budgets and their plans. Richard was one of the first people in the area to take up an individual budget, and since then the system has been much improved.
“It is really worth the perseverance,” says Dawn. “I would recommend it to anybody in a similar situation – but it would have been more helpful if there were more resources and support in place like there are now.”
Richard and Dawn drew up a support plan to help Richard manage how the money would be spent each week, and now Richard’s personal budget is up and running and he finds he has more control of his time.
When Richard lived alone, he was tied to the schedule dictated by the care agency – he had to work around this when he wanted to go to the cinema or out to eat. Richard now has seven personal assistants he can call upon as and when he needs.
“Previously, carers lived Richard’s life for him,” Dawn says. “Now the flexibility of an individual budget has helped Richard to live his own life and be in control”.
Richard’s individual budget also helped him buy a computer, which he uses to improve his speech and communication skills, and to keep in touch with his friends. He has also used it to share his experiences with Leicestershire carers who did not have direct experience of individual budgets.
Richard is also going out to share his experiences with parents and carers in Northamptonshire who are supporting people going through the transition from childrens to adults care services.
The individual budget has also helped Dawn and Gary. Previously they struggled to take holidays because they needed to be available for Richard at the weekends. But now they can arrange for a personal assistant to come and provide support for Richard if they want some time away. This can happen at a time of their choosing, rather than being dictated by care schedules.
Although the individual budget has been a success for the family, they think more could be done to support people through the process, particularly in the early stages when there is a lot to take in.
Richard’s aspirations for the future are to be to become more independent and to get a job again. He hopes to get more help with his speech, reading and writing and is hoping to go to the theatre and see musicals and dancing.
The individual budget has already helped him do some things he would not have been able to do before.
“It has helped me achieve some of my dreams,” he says. “Like going to Silverstone to see some motor racing, and going to the Dr Who exhibition.”
“The personal budget has definitely changed our lives for the better,” says Dawn.
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