Update to Case Management drama:
I met with my case manager from COTA (see previous post for the story so far). I told her to get to it; I didn’t even give her a chance for her usual draining chit-chat. I needed my energy to get through the session with her; thankfully my moral anger kicked in to lend me energy and thinking power. I first pried the phone number of the Homemaking service from her by asking her point-blank for it. Later, she justified not giving me the phone number two months ago — she didn’t think she had to give it to me because I already had it, because she thought in that vague way of hers that I had already received help earlier from them. I’m amazed my eyeballs didn’t fall onto the table. I demanded to know why I’d ask for homemaking help if I’d already received it? She repeated she thought I had it. She was thinking of the student who helped me for a few months before quitting abruptly. Not exactly a provincial Homemaking program.
Anyway, after I got the phone number, I asked her for all the information she had gathered to date. Of my list of items, she had three done — sort of. She had a phone number for one; 311 for the second; an information sheet from the City of Toronto for the third. (And, oh yeah, an application for the funding help I’d been receiving for years.) It took her since October 18 to gather that. She said she had to research them on the Internet, that she doesn’t know about these Toronto services.
Her territory is the City of Toronto. She’s been working in this job for at least two years, but she didn’t tell me precisely how many. I do not have esoteric needs.
She also doesn’t know what the Rotary Club offers, which I’ve been told by two doctors and a therapist should’ve been contacted on my behalf for at least one item on my list that she said there was no help for.
As I mentioned in my previous post, she had totally gotten some of my needs wrong. But she denied it. She insisted that she’d gotten my list all correct and hadn’t asked me to repeat any of my needs in a follow-up phone call. She insisted that she had listened (the implication being I’d misspoken — imagine, me, the “articulate one” telling her I needed something I’d been receiving for years). When I informed her of her error last week and what she should’ve been looking into, she didn’t leap to correct it because she “wasn’t at work.” Apparently knowing she was meeting me today was not enough incentive to make things right.
She constantly apologised: “I’m sorry you feel this way.” Would you feel apologised to with those words? Nope, me neither. I finally told her to quit it, that if she was truly apologetic, truly understood how much she’d screwed up, she’d say she was sorry for screwing up. I then lectured her on ehealth and computerization. I have no idea if she took in anything I said. She just sat there. She did intimate at one point she didn’t want to carry a laptop around on the TTC. Good thing all the students and biz folk I see on the subway with their laptops don’t agree with her. They’d get much less done and make errors, as well as spending twice the time on the same task, transcribing pen and paper to computer when they got home or to work. I rhymed off a list of lighter computer devices she could carry with password protection. It made me wonder if any of these people pay attention to the world-shattering Apple launches.
I called her boss. She said she’d talk to the case manager and get back to me. CCAC did not react like this when I called about a disrespectful OT; they believed me — they didn’t say they had to talk to the OT as if to imply they needed verification — and immediately looked for a replacement.
After she left, I needed a nap. But I stopped myself because I need to sleep at night. However, the rest of my day has been disrupted because as a person with a brain injury, it’s very difficult to refocus. I went from anger to weariness to distractedness to upsetedness. That’s when I called my MPP to see if I could be un-split. Only people with brain injuries — the folks who by the very nature of their injury need things to be simple — are split between COTA and CCAC. As I understand it, no one else is. People with cancer get 100% of their help, including case management, from CCAC. I’m ready to cry over this injustice and unnecessary bureaucracy. I’m hoping by writing this, by venting, I can get back to my day.
Update 4 Jan 2012:
The case manager’s boss called after speaking with the case manager. She wanted to discuss some issues. She wanted to persuade me to continue on with my case manager and was wanting to work things out so that could happen. I cut her off. I wasn’t working with that case manager, and I didn’t want any contact by any means with her. She tried again, and I cut her off again. So then she said there were issues that had to be discussed. There is nothing more upsetting than talking to someone with a sweet, gentle voice who implacably talks to the patient as if they are a problem, and in this case, will not meet the patient’s request for a new case manager unless the patient gets abrupt and brusque and refuses to discuss working with the problem case manager.
She began with miscommunication. If I wasn’t so upset — and one thing she knows as everyone in the brain injury community knows is that people with brain injuries have labile emotions, you never know what you’re going to get — I’d have laughed. She was talking to the person labelled articulate. I am always and immediately labelled as someone who communicates well by every therapist, every rehab person, every psychologist and doctor I’ve ever seen right from 2000 on. Any miscommunication was on my case manager’s part, but by wanting to discuss this with me as an issue, she was implying that my case manager had listened well and got down all the information correctly, thus it was me who had not communicated my needs well, who was the problem. I told her I had no trouble working with anyone else and in communicating my needs to anyone else; everyone but my case manager knows what they are.
She moved on to the issue of computers that my case manager had said I talked about. Basically, if I expected their case managers to have computers or iPhones, I should consider not receiving service from them. They don’t have funding, she said. (Why would a therapist need an agency to fund their own smartphone anyway? In today’s society, every professional should have one regardless, but apparently in the eyes of OTs, not.) Yet my very bringing it up in the first place, then suggesting we discuss it outside of the case manager issue was seen as a reason for me not to receive service from COTA. She told me I have until next week to think about it, to think about whether I wanted to receive service from them or not when she would call me back — next week because the case managers weren’t in the office (not at work?) this week and she wouldn’t be able to find out who’s available to take on my case until they come into the office next week, not that she’s hopeful there would be someone available.
It seems to me that by using that nicest-possible-we’ll-talk-to-you-when-you’re-less-upset voice and suggesting I need a week to think about it, she is threatening to remove services from me if I don’t behave. It isn’t about me having a choice, for COTA is the only publicly funded entity that provides case management services to people with brain injuries, and she knows it. Imagine what effect this would have on an ill or very injured person? They would comply and drop their request. They would put up with bad health care for fear of even that being taken away. And they would not have their needs met plus have their health worsened through the stress of thoughts of abandonment as well as the stress of being forced through gentle, implacable persuasion, to work with someone who doesn’t listen and doesn’t meet their needs.
Update 11 Jan 2012:
On Monday, the COTA case manager boss called and gave me the name of my new case manager. That’s it. Short and sweet. I was so astonished. And relieved. The only strange thing was her reaction to me asking her to spell out the new case manager’s name. I have a hard time understanding names over the phone, and so I’ve gotten into the habit of asking people to spell them out. I usually get an uh, well, never-had-to-spell-out-a-simple J-A-N-E before kind of response. But they do spell it out. She wouldn’t. She spelled out the case manager’s last name but neither spelled out the first name nor repeated it. You’d think someone working in the area of brain injury would be familiar with auditory processing or hearing problems and would not only ensure a clear phone line, but also enunciate names clearly and repeat them slowly. Sheesh.
The new case manager called me today to make an appointment to see me and right off the bat spoke slowly (not loudly, which is what people usually do when asked to speak slowly, much to my ear’s distress) and enunciated every word. It was a bit irritating, but then I told myself I had no — zero, zip, nada — problems understanding every word, including the name. He repeated his name at the end of our conversation without being asked to. How unusual after my recent experience. Hopefully, auspicious.