Alex's personal budget story
Sally Percival is the chair of TLAP's National Co-production Advisory Group and was one of the original signatories to the partnership agreement when it was launched in October 2010. In this week's blog, Sally - a passionate advocate for personalisation of care and support - explains her involvement in TLAP by sharing the story of her son Alexander.
My son Alexander is 20 years old. He is a fantastic young man, very funny and really enjoys life. Alexander has a diagnosis of autism and a learning disability with associated mental health problems. This means that he needs a lot of support in the home and is not able to go out of the house on his own.
Prior to receiving direct payments and having a personal budget, Alexander was given a one-size-fits-all service. This was fairly inconsistent and often meant that there would be a number of different and new people turning up at our house each week to support him. The condition of autism needs routine and generally what would happen was Alexander would go into his room and the people who turned up to support him would have to leave. The service was causing more stress and difficulties than if we didn't have the service at all, it really wasn't working at all.
We applied for a direct payment as soon as we could and the change has been massive. By choosing and employing our own staff we are able to keep consistency and reliability in Alexander's support. We have now had the same personal assistants for Alexander for the last eight years and can plan things successfully around his scheduled support. It is a lot less stressful as we know Alexander is going to get a good quality of support and will enjoy himself.
Alexander has a real passion for World War Two and is a fanatical World War Two re-enactor and member of several living history groups. I used to have to take Alex every weekend and he knew it wasn't really my thing, but now his personal budget helps go towards a personal assistant to take him to these re-enactments. They are often over night so while Alexander pays for all his own costs, the personal budget goes towards the expenses that his personal assistant will have, such as hotel bills. Without the personal budget he wouldn't be able to go to the re-enactments. When his PA was unwell recently, other members of the group offered to support him so he could join them on a weekend event. Although Alex chose to come home early it was still a huge and successful step.
Before he started re-enacting, Alexander didn't have a particular focus in life, since going to re-enactments his interest has encouraged him in so many ways. For example, it has given him the desire to learn to read and write and spurred him on academically and without me there for him to cling to his confidence has blossomed.
It also means that while Alexander is away I have the opportunity to have a bit of a life myself and I can recharge my batteries ready to listen to all the intricate details about his weekend. That gives me the strength to go on during the week as well and helps makes life liveable.
It's not easy for Alexander doing a lot of the things that he does, but his hobby really pushes him out of his comfort zone and has given him so much more self belief. Now when he goes to re-enactments, his personal assistant is often just in the background while Alexander is the one that takes over. That would never have happened previously and he really feels part of a community now.
I am so proud of Alexander for what he has done and so are a lot of other people, his whole family look on at Alexander in awe at the courage he has. Direct payments and a personal budget have made all the difference and given us all a normal life!
Sally also appears in the Making it Real films - describing why she thinks making progress towards personalised and community based support is important in terms of gaining independence for both Alex and her mum: http://www.thinklocalactpersonal.org.uk/Browse/mir/aboutMIR/videos/personalStory/?cid=9206