I have a brain injury. That means, through some incomprehensible bureaucratic logic, I receive social work, occupational therapy (OT), physiotherapy, etc. through my local CCAC or Community Care Access Centre, and case management through COTA Health, which stands for something to do with occupational therapy. And they only talk to each other if CCAC makes it happen. I am about ready to tear someone’s hair out. And it isn’t mine.
CCACs vary a lot in quality, I’ve heard. Some believe Toronto’s is better than others, some not so much. I like my CCAC care coordinator and she’s done a good job, albeit requiring one half-hour yelling session over the phone about a disrespectful (and Luddite) OT who was sent to help me organize myself using my handheld device and computer. She sat in her coat, asked stupid questions whose answers were already in my file, and hand-wrote notes. Hand-wrote! The person supposed to be helping me with computer scheduling and GTD (Get Things Done) technology didn’t even have a Palm! I got the feeling that because I had a brain injury — aka I was stupid — that she thought she could treat me however she wanted to and I wouldn’t — because I couldn’t — object. Unfortunately for her, my anger rose up and stimulated me to action. Unfortunately for me, the same has not been true with my COTA Health case manager.
Maybe it’s because COTA Health saps me of all strength. It wearies me. It tires even my anger out. My COTA Health case manager usually costs me half-a-day or more of functionality every time I see her or have contact. Some care.
Side note: Only my CCAC care coordinator comes to my place lugging her work-issued laptop and takes notes on it. Everyone else uses pen and paper for note-taking, even the therapist hand-writes notes during our sessions, the one who my care coordinator assigned me after my yelling session and who has her own smartphone and who dictates her notes into the computer once back at the office. So it isn’t because she’s technologically challenged. It’s the way they do things. Why her office doesn’t issue a light laptop or iPad with password protection for note-taking is beyond me. But I understand that in general OTs, and other therapists, are notorious for not knowing how to use computers in the way those of us with brain injuries must if we are to be functional. It is unacceptable. But they get away with it probably because most of us with brain injuries don’t know how to push them with our outrage into the 21st century.
Community care is supposed to provide people with illnesses or disabilities care in their home, where they can benefit from it the most. People with brain injuries are short-changed in two ways. The first is the same as everyone else: funding has been cut back so much that I’m only entitled to three or four sessions with a social worker, something similar with a physiotherapist, and no care from a psychologist or similar therapist. I could be put on a waiting list for the latter but because I don’t have a serious mental illness and am not about to jump off a bridge, I probably will never see one. As for the other kinds of care available, three or four sessions are barely enough to get going on my needs. I can ask for another series of three. But people with brain injuries have trouble initiating. Initiating once to ask for care is impressive; twice impossible.
The second way we’re short-changed is in time. For example, I’m entitled to something like three or four sessions with a physiotherapist — within four weeks. That means if I need physio every two weeks or three — the time it would normally take for a person who processes information slowly to incorporate exercise suggestions and know how they’re working — I’m out of luck. I had to use my assigned sessions up in four weeks. If I recall right, I didn’t use them all because in the followups I’d stare at him and he at me with me not being able to give any feedback yet on his assigned exercises. It was a waste of my energy and everyone’s tax dollars; yet I could really have benefitted if I’d been allowed to see him a couple of weeks later when my brain had finally managed to spit out feedback. Also, as a person with a chronic condition, I’m not entitled to actual physiotherapy per se, only exercise suggestions. If I had an acute condition, like knee surgery, then I’d be entitled to physio. So if your brain injury causes problems with muscle tone, tough. You don’t get help. Well, unless you can pay someone. The other time issue is that people with brain injuries don’t get miraculously cured in a year or three. I know, I know, there are all these feel-good miracle stories out there. But scratch the surface — or know through your own experience — and you’ll find that it’s all hogwash. Yes, the people in those stories have improved tremendously. But no, they’re not “back to normal.” They’re not fully functional on their own like a healthy, independent adult. They have a lot of help and put a lot of effort in to getting through each day, even with the stupidly simple things like brushing one’s teeth (which reminds me …). Yet the bureaucrats at CCAC think people with brain injuries should be all done like dinner and no longer needing care after a year or so. I wish.
And then there’s my case manager at COTA Health who decided without telling me that I no longer needed her services after a few months. Long story short: About a year and a bit after she disappeared, I ran into her boss. Her boss spoke to her and at the end of September 2011 told me that my case manager would get back in touch with me and apologise for disappearing. (She’d apparently thought she’d discharged me.) And no I couldn’t have a new case manager. Give her another chance, she asked. I wish I’d been as angry at that point as I had been with the disrespectful OT. But I wasn’t. And so I acquiesced. Dumb decision.
Just because I’m smart doesn’t mean I can initiate or stand up for myself, doesn’t mean that that part of the brain that allows us to advocate for ourselves works. It’s anger that gets a person with a brain injury to do move. And it’s sharp focussed moral anger, not the all-consuming brain injury anger, that opens one’s mouth to say this is not acceptable. Family and friends of a person with a brain injury need to help us with correcting a bad situation. And having one conversation with us ain’t going to do it. It sucks having to help, but not prodding in a gentle, wise way sucks more. I think too people who know those with brain injuries need lessons on how to do that. My new neurodoc did tell me a few weeks ago I didn’t have to put up with my case manager, that I could ask for a new one, especially as I had given her a chance. But one conversation with him wasn’t enough to prod me into action. Anyhow, I digress. You see, I just don’t want to deal with my case manager.
Back to October and her apology about a week after I spoke to her boss. In the rare case I’m offered an apology for sucky behaviour, I melt and accept fully. But not hers. I didn’t feel it. Still, I uh-huhed and agreed to meet her. On October 18, she arrived. She wanted to chat; I wanted to get on with it and get her out the door. From what I recall, every now and then, she wrote notes in her not-large spiral-bound notebook, a page of them. As I mentioned earlier, it’s pen and paper in therapy-ville. Given my long list of needs, I’d’ve expected her to write more, but thought perhaps she writes a lot in a few words. On the other hand, she asked me several times, until I was ready to bite her head off, if I wanted homemaking help. I said yes each and every time.
And that’s what has set me off today.
It is over two months later. I’d asked for homemaking help back in 2010 when the only action I’d received before she disappeared was being enrolled in the Trillium drug plan. She told me no can do to the homemaking back then. But she looked into it again in 2011. We were supposed to meet in early November about how she got on with my needs list, but she called to cry illness and insisted we meet on a day I already had two things planned. After a day of processing and realising that would put me behind the energy eight-ball, I called to say let’s talk over the phone on Remembrance Day instead, that way I would get the info without being infected and drained of energy. On Remembrance Day, she told me that she’d contacted a homemaking service that provides subsidies and they would contact me. She also had questions, questions that indicated to me her note-taking ability was, how shall I put it?, incomplete. I repeated myself from our first meeting. That did not make me a happy camper. She told she would call me the following week.
This is a familiar refrain with my COTA Health case manager: “I’ll call you next week.” But she doesn’t.
Over two weeks later, on November 28, I called her boss, asking where my case manager had disappeared to, wondering if the homemaking service was going to call me, wondering if I’d get help with my heating bills, being as winter was coming on. She said that she’d have her call me, that the case manager’s notes were in the computer, everything seemed to be there — but I didn’t take my own notes and didn’t recall all at once, over the phone, the long list of needs I’d given her, so I couldn’t confirm that in fact my case manager had transferred her pen and paper notes to the computer in the office completely. She asked me again to stick with her. Finally on December 6, I heard from my case manager. Still working on my list. And oh, I probably no longer qualified for the homemaking help. Great. Also: Somewhere along the way my case manager screwed up. Again. She’d added a financial need and dropped a corollary, which I found out for sure today. I had wondered about that when she’d called me on December 6, but I was so ticked and confused about the homemaking, I didn’t take it in. She ended the call with saying she’d call me the following week with more info, maybe we could meet.
So “next week” is December 21. Yes, in the busy week before Christmas she called me. She wanted my email address, which she had but lost, which she wouldn’t have lost if she’d used a netbook or laptop or iDevice or even a smartphone when we met back in 2010. But you know, the therapy community sure likes its pen and paper.
I was steamed. I emailed it to her Friday when I could email her without a long stream of invective. Today, she emailed me back with the info it took her from Oct 18 to discover, hoping we could meet this Friday. Is she kidding me? It’s Christmas week. It’s a friggin’ holiday. Even those of us with brain injuries get to have some down time, some time not having to deal with therapists and doctors and bureaucratic systems. This was my one week of freedom. Apparently not. I guess I should be grateful it took her only, uh, nine weeks total to get the info together. In her email, she also told me I had to call the homemaking service but neglected to include the phone number.
So in a nutshell, my case manager has learnt in just over two months and passed on to me that: the homemaking service was going to call me; the homemaking service considered me unqualified; the homemaking service needs me to call them.
As far as my other needs are concerned, she forgot a few (heating, hydro, transportation, etc.), added a financial break I already have, thinks I may have already received assistance in another (uh, no, else why would I ask?), contradicted my neurodoc in funding being available for one (she says not), and may or may not have gotten one right, I can’t tell. I told her to show up next week. I may need a caseload of chocolate to get through the meeting … assuming it happens.
In one of my conversations with the case manager’s boss, I asked if they had a centralized list of resources, you know, something each case manager could access and look up for their clients without wasting time repeating work others had done, without having to take so long to find the resources a client needs, something easily created and managed on a computer (pre-injury I used to design computer databases). They’d discussed it. Two years ago. This is the standard of rationed community care universally applied for those of us with brain injuries in Ontario, Canada.