As time went on, I noticed my disability getting worse and I needed more and more help. It started with just an extra rail on one side of the stairs and now, today, I am sat in a fully-powered wheelchair with only limited movement in my hands. I am also dyslexic.
The question I get asked most is, “What is it like?”. For me, I’ve just got on with it, building my needs and care team as it has been needed.
That being said, it’s not easy. It does require knowledge and persistence. There are lots of ‘down’ times (we are human after all), but generally I feel happy and relatively content. I appreciate what I have; a roof over my head, food in my stomach, clothes on my back, and a team to look after me. I consider myself lucky. There are people out there in the world with a lot less and this is my mantra which is what keeps me going.
The knowledge has come over time, it didn’t happen overnight. My previous job involved working with lots of law and policies and this gave me lots of preparation. It’s kind of sad really, but I actually enjoy reading policies and processes.
Having the knowledge and using it empowers you. You don’t need to know it all, you just need to know where to look and more importantly HOW to look. This is essential. Talking to others on Facebook and other sites is great but you need to go to the source relevant material. Once you have this at hand, social services and the NHS are unable to argue with this, as it is the law and they have to comply.
Here is a tip that I use regularly… The Care Act is over 100 Pages, on top of which there are over 20 pieces of regulations, and it’s all summed up or explained via a statutory guidance (Legal which must be followed) over 400 Pages (used to be 600).
There are instructions on how to search the document – so, say you want to know about disability related expenditure, type this in the search bar and it will find you all the instances of this is in the document. You can jump to each one and find the relevant bit. You can then copy and paste the appropriate section to email to whichever social care [body] to remind them this is the law.
I started with one employee and progressed from there (now at seven covering a 24/7 period, in addition to my daughter who is paid to assist with some of the admin), I built my own tools. Everything you need is available online, from recruitment, tax, employee guides etc. With mycarebudget.org this has become even easier as it’s all there for you. Again, knowing how to search is more important than the search itself. Look into Google searches and learn how to be more specific using things like ” ” or adding this not that. After some time, it can make a big difference.
Finding good staff is really hard, losing them even worse (see below). Pre-trained staff, I’ve found are not always the best, if they’ve been doing the job and trained to their previous workplace (e.g. in a care home), sometimes, you then have to break the training down and retrain to suit your own needs and requirements (e.g. home care). Someone may have completed a theory manual handling course but dealing with my conditions in my environment, with my equipment is very different in practice.
I find advertising locally via shop, store notice boards or by word of mouth best. You get a good mix of candidates who are often local. I’ve also found that university students are often really good, though obviously have some restrictions on their hours.
I’ve not yet used agencies as I find arranging and making choices about my care empowering. It’s also a cheaper option for the government, as they don’t have to pay someone who then has to make a profit for the company.
Emphasis for me is on working in a team, we have a WhatsApp group for callouts for emergencies, sickness or annual leave cover and it works quite well.
The hardest part I find is managing staff. I’m not a natural manager, I hate having to say no or tell anyone off (even though I know and use many techniques like praise sandwiches). It’s something I’ve had to learn and adapt to but it also helps to remind myself we are all human and not perfect.
Two things constantly worry me. Firstly, what happens if my care staff or a couple of them decide to leave? Hopefully I’ve built in contingency for that, but you never know. Secondly, one thing I’m certain of is that I hate the thought of being in a home. I value my independence, control and choices. Being able to say I’m not getting up yet, or not ready to go to bed yet is a huge uplifting prospect.
Another point to add is saying goodbye in the ‘workplace’. After building relationships and investing time and training with my carers, you become grounded within a great routine. You spend a lot of time with them and they become big parts of your lives (and vice versa). They keep you going day in, day out, and you get to know them too, their ups and downs, their likes and dislikes. These people are heavily involved in your life and then, one day, they move on to new opportunities and you hear very little from them again. Realistically, I know it’s just a job but it can feel like a big loss from my home which can take some getting used to.