Before I applied for Self-directed Support I had agency staff coming into my home to support me, but I felt ‘unseen.’ The workers would ignore my views about how I wanted to be supported and largely ignored my suggestions about what I wanted to do. I have a significant physical impairment and they did things ‘for and to’ me rather than encouraging or supporting me to be more independent. I communicate with a Lightwriter using my feet and this takes time, but they just didn’t have the time. Being unable to express myself to those workers became detrimental to my health and I had periods of feeling very low.”
Aileen (PA): “I had little experience of PA work before working for Barry. I had worked in quality assurance and as a cleaning supervisor so this was ‘new territory’ for me. I began to think more about the quality of support that people should have access to during a difficult time when my father was ill and my son was recovering from a road accident. I got a great deal of satisfaction helping them both to recover to full strength.
Following that experience I joined an agency and initially began working with Barry through the agency and we got on really well, but I became dissatisfied with the work as there was never time to get to know the people I supported. It was ‘complete the task and move on to the next person.’ Barry was already unhappy with the agency’s general response to his wishes.”
Barry: “I received advice from the person who manages my selfdirected Support budget that I could directly employ someone as a PA, so I gave up the agency, offered Aileen the PA job and we have never looked back! I think of Aileen as my ‘hands’ to do things that I can’t do for myself. Aileen helps with housework, food shopping, meal preparation, and personal support. But it’s also so much more than that. Aileen supports me to get out into the community. We go to a variety of activities including swimming and we go along to the local golf club – ok I admit it’s for the social side only, but I really enjoy having a drink and ‘chewing the fat’ with the club members.”
Aileen: “I think that I should also mention that Barry is a published author.”
Barry: “I had the ideas for the books in my head for a long time and had started with the first one, but things had stalled a bit. Aileen encouraged, or should I say cajoled me, to keep going! It was worth it: I have now completed and published two books, a novel and the first volume of my autobiography. It’s a long story, so I am now working on the second volume.”
Aileen: “It’s great to see how much happier he is now, but the job has also given me a great deal. I really enjoy Barry’s company and feel I am more forward-looking, open, and more confident. I know Barry well enough to do more than simply complete physical tasks. I can discuss my ideas with him and encourage him to try out new things, but the final decision is his. I don’t forget that he’s the boss. I would say to anyone thinking about applying to be a PA to just do it. It’s the best job ever!”
Barry: “There should be more coverage in the media about how disabled people can have so much more choice and say in their lives through having a PA. Life for me now is good and I feel back to my old self.”