We have an election in BC on May 9th for the provincial government. Both Disability Alliance BC and the MS Society are working on their priorities for the upcoming campaign. It’s important that we think about the people behind the priorities, the effect that these priorities have on their lives. Over the coming months I’ll be doing a series of posts on the priorities we have decided on, and the stories of the people behind them.
One of the big priorities for both organizations is our approach to care. There are many stories more critical than mine, but it lays the foundation. The process that the system is built on.
Applying for assistance with care is an intrusive process at its best, because it deals with your bodily functions, those most personal aspects of your life. Applying for care and continuing to receive care within these programs needs to recognize the person and their right to privacy.
I get my care through CSIL – Choices in Support for Independent Living. On the face of it, it’s a great program, because it gives you a great deal of independence, but there are other aspects that need attention.
Starting to apply puts you into a strange world. You are asked to time all aspects of your life that need care – transferring on and off the toilet, showering, dressing, eating. You name it, you time it. As you can imagine, it’s tedious and not very accurate. After you have completed your timings, you learn that there are already a whole load of rules in place!
Meals – if there are two of you, you can only claim for the time it takes to do anything different that is just for the person who needs care. So my husband prepares all of our meals, but we can only claim for the time it takes for him to chop up my food for me!
Compression socks – it took you 4 minutes? Sorry! Our list says it should take 2 minutes – that’s all you get!
Laundry – only the time it takes to load and unload the machine, not the time it is in there
And on and on the list goes on. Perhaps you get a community care nurse who knows a few tricks of the trade and helps you to complete it all. Perhaps you get one that makes you feel like you’re over-exaggerating your needs. Who you get is really important – they are the person that is representing you!
Your needs are presented to a panel, a committee, someone who makes the decisions about how much care you get. My first response was “Great! When and where? Do they know I can only do mornings?” Then here comes the crunch. You’re not allowed at the meeting. Wait, what? You’re talking about me, about my needs, and I’m not there? What about Nothing About Me, Without ME?!? A client centred approach would begin with me being there, and then move on to other options if I didn’t feel capable of representing myself.
Once you get through this, if you are successful, you are given a number of hours and the money associated with it. But this process does not go away. You are re-evaluated periodically and have to do the timings again. That makes sense, right? I have a progressive disease, I’m going to get worse, we need to make sure that I’m receiving enough care? No. Behind the re-evaluation is the possibility your timings are wrong, that you’re taking more than the allowed time to transfer. The threat that your hours may be reduced. And on top of that, the timings could be done by the person conducting the review – a complete stranger timing your most personal acts.
CSIL means you are the employer. You find your staff, you hire them and fire them, train them, pay them, do taxes, WCB. A great deal of independence. And every single person on CSIL is doing this independently. One person on it told me that they completed 14 ROEs in 6 months as staff came and went. Wouldn’t it make sense if there was a collective of people approved for CSIL? A database of staff in your area that are already employed by someone else on CSIL and might be available for some extra hours for you? A network of people just like you that you could work together with? Independent doesn’t have to mean alone. Wouldn’t interdependent be a better approach?
Certainly, CSIL is the right approach to care for me. The home care model is not something that I would consider. But CSIL needs some work. It needs to put the client at the centre of the model.