Going to university and diving into the world of management – all at the same time!
As someone with a physical disability, the list of things that needed arranging before I went to university was longer than my non-disabled peers. This included how my support needs would be met.
This was a huge hurdle from the get go. After my social care assessment the social worker informed me that it was quite possible I would not have any support funded. I remember asking how I would manage to go to university with no care support. She casually said I wouldn’t be able to and once I left my residential college I would go back to living with my mum who could care for me. However, thanks to a very supportive tutor I was eventually given the funding I needed.
I knew I wanted to be in control of who supported me and when, so rather than a council funded care agency I opted for having a Direct Payment which enabled me to recruit who I wanted and ensured I was in full control of the support I received.
The reality of this meant that aged 20, with just 10 minutes of someone running through my employment responsibilities and now living 2 hours away from home I was an employer. It was a new experience to have to train my novice team of PAs and learn how to direct my care. Most people choose to go into management, often after some time in employment, building their experience. This management role was put on me with no training or support and I was left to work this out for myself. I also have great difficulty recruiting people who see this as a real job (this could be a blog in itself!).
Managing people who see you naked!
I believe PA relationships are probably one of the most complicated working relationships there is. This is largely due to the blurred boundaries. Putting it bluntly, I doubt there are many other jobs where an employee sees their boss naked on a daily basis and has to support them with the most intimate tasks. This makes for a difficult dynamic when issues arise. In usual employment, a manager could give an employee a warning and they both then get on with their individual jobs. With my PAs their job is my life. The fear of tense atmospheres and PAs walking out on me have caused me to put up with things that I’m not happy with. This is the downside of having total control!
Despite these challenges being able to employ PAs has been liberating. I now live independently and work. In addition to the practical aspects of life, my PAs also enable me to have a good social life and have been an invaluable support to me over the years, both physically and emotionally. Without the help of my PAs past and present I know I wouldn’t be the person I am today.
My assistance dog is part of my Direct Payment and saves the council money!
There is a common misconception that Direct Payments can only be used to employ people. I have an assistance dog called Folly who was trained by Canine Partners. After a long fight I was able to have her added to my care plan and her weekly expenses are covered through my Direct Payment. In my eyes this is a win win situation for both me and the council.
I only have PAs for a certain number of hours per week so Folly is effectively my 24/7 carer, always on hand if I need help. She does a large number of tasks which aid my independence. I find it difficult to ask people for help but that is non-existent with Folly as she sees all her ‘work’ as a game and is actually delighted when I need her help. This too has been liberating for me, along with the positive effects she has had on my mental health and confidence.
Although employing PAs gives me a lot of control there is still a lack of flexibility as people need to know when I need them to work which often requires me to plan my life around this, leaving little room to suddenly decide to do something different. This is when Folly really comes into her own!
What time would you like to go to bed on Thursday next week? You don’t know? Me neither but these of are the types of plans people who rely on support often need to make. Folly has given me the freedom to choose when I go to bed. It doesn’t matter to her whether it’s 8pm or 3am. She will undress me, pull my duvet back, lift my wheelchair footplates up, be on hand to fetch the phone if I fall and finally turn the bedroom light off. The costs of Folly’s weekly expenses are equivalent to just over 4 hours of PA support so not only is Folly giving me more control over my life, she’s saving the council money as I would need much more PA support without her.
My Direct Payment has given me the choice and control I wouldn’t otherwise have had and the effect of this has been life changing for me. Being an employer isn’t easy and as the use of Direct Payments and Personal Health Budgets increases I hope the support and training is there to help people take control over their lives, ultimately enabling them to lead ordinary lives.
