You know what it’s like when you first move out of your family home. You suddenly realise that clothes don’t wash themselves, beds don’t make themselves, and boiling an egg is a hell of a lot trickier than you thought. Everyone goes through the stage when they live off beans on toast for months before they get to the point when a trip to Ikea is the most exciting thing imaginable. But when you have a disability there’s more to think about than how many Pot Noodle’s you have in the cupboard.
Admittedly, the situation that surrounded my moving out was extremely chaotic, and at the age of eighteen, I ended up moving in with a very good friend. She taught me all the necessities of being an adult, like; how to set up a direct debit, how to successfully go food shopping, and when all else failed, which microwave would be best for zapping a Pot Noodle. I was extremely lucky that I had three months of ‘boot camp’ before I was shoved out into the ‘real world’. Honestly, though, nothing could have prepared me for what was to come.
A few days after moved into my new home, which we had fought tirelessly to get, I arrived back from school and I really needed to pee. It sounds ridiculous to say, but due to my cerebral palsy, I can’t take myself, and that’s why I’d move to a place where I’d be supported to live independently. The care company that had agreed to assist me was primarily set up to support people with learning difficulties, but a combination of my desperation to have a roof over my head and their apparent eagerness to take me in, meant that I was the first to break their mould. Anyway, I went to the office to ask if someone could help me out, only to be told I’d have to wait forty-five minutes. It’s a small thing, I know, but that was pretty much my first interaction with any care company, and I didn’t like the fact that I had to cross my legs until someone became available.
Within a week, things had gone from bad to worse. I was told that it was company policy to keep bank cards in the safe, meaning that I had to ask permission to spend my own money. It was suggested that I wear incontinence pads which would result in me calling the staff out less. And I learnt that if I wanted to do anything out of the ordinary, such as go out to meet friends, I had to give four weeks’ notice in order to not be charged for the support I’d miss. Number one; I had only just learnt to manage my finances effectively, so I wasn’t going to give up control of my money. Two; I spent years training my bladder to ‘go when it can and not when it must’, so it didn’t need to take the easy option of being able to constantly trickle. And three; I have no idea what I’m doing tomorrow, let alone in four weeks’ time, so that system wasn’t going to work. Everyone is suited to different ways of doing things, and that may have worked well for some people, but it didn’t for me.
It very quickly came to my attention that if I was to stay being supported by the care company, I wouldn’t have any freedom. I had no means to go out and about, no choice in when I got up or went to bed, and no say in who came into my home to assist me. Essentially, for nineteen hours out of twenty-four, I was left to my own devices, unless I needed the loo and then I was charged for the privilege. I didn’t feel like I’d gained my independence; quite the opposite. I felt as though I was going stir crazy inside the four walls that were supposed to help me live - not just exist.
Please don’t think I’m verbally bashing care companies because I’m not. Some are great and some of the staff who work within them are fantastic. I understand funding is always a problem, and care is a significantly underpaid profession considering the amount of work the job entails when it’s done well. But from my experience, most companies, for various reasons, are going against the very thing they’re outwardly seeking to accomplish: To provide person-centred care to vulnerable individuals and support them to achieve a high standard of living.
What was the solution to my problem? To ditch the care company for daily support and employ personal assistants. These are people who I interview and who I choose to employ. There’s no middle-man which means the wage I give them goes to them, and them alone. It’s also more cost effective on my part because I don’t have to pay the high rates care companies charge, so to put it into perspective, when I switched from agency care to private care my support hours per week went from thirty-five to fifty-three.
I can dictate when my hours fall which ultimately means I have the luxury of deciding what time I want to get up and go to bed. Don’t get me wrong, I still have to ensure I fit everything I need to do within the time my budget allows, but there is flexibility within it and I’m in control. For me, this slots into my ever-changing, chaotic and sociable lifestyle quite well.
Most importantly though, I’m able to pay people I actually like to be my skivvies, so we can have a laugh while they mop my floors and cook my tea. No, I’m only joking – they’re not my skivvies, they’re my employees, I must be professional. In my mind, the fundamentals of caring should always consist of an ingrained compassion for people, and this can only be attained when a rapport is built between the carer and the client. This is what the personal assistant system encompasses. It enables people to make a real difference to the lives of others.
It’s not perfect, but nothing is. There are still times when I’m stranded due to staff sickness or just a series of unfortunate events. I’ll always have to schedule my life to some degree to make sure everyone knows what they’re doing, and in truth, I don’t even have to do that. If I wasn’t the control freak that I am, or if I didn’t have the capacity, I could give the role of organising rotas and dealing with staff-shortage to someone else.
For sure I’ve worked alongside some very interesting people in the past seven years, but I’ve also made some fabulous friends. And one thing’s for certain, I wouldn’t be able to live the life I do or have been able to achieve what I have without personal assistants.