I’m afraid that this blog post may take a few pauses to complete. One reason for this because I’m juggling so many different things at once. (“What’s different about that?” you’re asking.) Another reason is because this topic is very upsetting for me. It’s infuriating, humiliating - and I feel like holding my head and screaming, “Not again, not again, not again!”
l attended a Zoom meeting on Friday, October 18th, with my CDAC (Communication Disabilities Access Canada) group. Before the meeting actually started, one of the members told me something that was very disturbing.
I’m not going to mention the name of the person, because I’m not sure if they would be okay with it or not. However, I will say that they were one of the people who, thirty years ago, were instrumental in the foundation of CILT (the Centre for Independent Living in Toronto.)
CILT is a government funded organization, which provides funding to people who have physical disabilities, like me, so that we can hire our own caregivers (or, as most people call them, employees or PSWs) to assist us with our needs in our daily lives. The funding we each receive is called Direct Funding, which allows us to advertise for people, train them, and pay them for the hours they work. Direct Funding gives people like me true independence and self-determination. There is nothing more wonderful in this whole world than to know you’re independent and have a sense of self-determination over your own life!
Well… on that Friday afternoon, the member of the CDAC told me that someone from the government (I don’t know from which branch) consulted with some people from CILT on whether or not people actually needed Direct Funding, or whether they could go back to using care workers from agencies, like Tobias House.
(Kill me now!)
I need to pause here. Maybe I’ll drink some Crown Royal and beat up one of my pillows - but I’ll return in a short while.
***
I’m back.
The newspaper article above is from about 19 years ago. I went to talk with Toronto Star journalist Helen Henderson at that time to discuss the cases of abuse, which were happening incessantly at many, many agencies that provided 24 hour assistant assistance for people with disabilities.
Although they weren’t with me at the time, two of my friends, Tina MacDonald and Lolanda Kerns (better known as Cookie) added their two cents to the article. They lived in the same apartment building as I did and received the same assistance from the same Tobias House PSWs.
Like other 24 hour on-site agencies, Tobias House had an office space within the apartment building. There, clients could go readjust their schedules, discuss specific tasks that they needed help with, or go register complaints about certain workers with on-site managers
Tina, Cookie and I (as well as other clients in the building) had similar, if not the exact same issues with the exact same PSWs. For example, there was this one PSW who would come into a client’s home, help them get onto their toilet seats, and then go out onto the client’s balcony and fall asleep - for literally hours! This meant that the clients were stuck on their toilets for hours at a time, unable to do anything.
This one PSW was never fired, no matter how many times people wrote up complaints about them. They even had the nerve to actually yell at me for complaining about their lack of professionalism!
However, “lack of professionalism “ was just the tip of the iceberg. Some of the PSWs displayed so much disrespect and distain towards their clients that it was devastating to people’s psyches.
I had a friend who lived in another apartment building that had 24 hour PSW agency assistance. This agency was run by the March of Dimes. With all of the good March of Dimes does in the world, it was rather shocking to see how the management of this agency treated my friend.
Time for a pause. I’ll be back ….
***
Please forgive my very long pause. I had to reply to many emails, work on my recent painting, sell my artwork at the St. Lawrence Market, among other things.
As I was saying, my friend received 24 hour assistance from the March of Dimes agency. He, like myself, was unable to speak, and so, used a speech board to be able to communicate with people.
Watching someone point to letters, phrases and Bliss Symbols on a large piece of laminated cardboard in order interact with them should be fairly easy, right? Not according to the PSWs of the March of Dimes, who outright refused to even try to communicate with my friend this way. Because of this fact, my friend couldn’t let them know if the pieces of food they were giving were too large for him to eat, and he would often choke during meal times due to this act of negligence.
My friend went to discuss the situation with the site manager of the March of Dimes agency. With tremendous frustration, my friend was told that the manager was siding with the PSWs in this matter. They said that the PSWs shouldn’t have to be expected to interact with him by reading his communication board.
(What the proverbial fuck?!)
CILT gave my friend a few hours during the week to hire his own personal PSWs - although, technically, it wasn’t through the Direct Funding Program.
The people my friend hired adored him and did anything he requested. They had no trouble communicating with him, nor were there any problems/conflicts in regards to helping him to live his best life.
I was very fortunate to have my late husband Rob with me when I was receiving PSW services from Tobias House. When they were late, or didn’t show up at all, Rob would help and support me. If they made me cry by humiliating or taunting me, he would comfort me and tell me that everything would be ok.
Other people weren’t so fortunate. Besides dealing with no-shows and humiliation, some people had to suffer physical and/or sexual abuse. I know this because they were my friends, and they told me in great, horrendous detail about their experiences. Most times, the site managers would say that unless there was hard evidence, clients would have to still welcome the abusers into their homes. Most of the clients, to protect themselves, would move out and try to find another apartment building that had 24 hour PSW assistance. Or, if they applied for Direct Funding and were lucky enough to receive it, it was like finding a pot of gold at the end of a rainbow.
I often tell people that nothing really scares me. Not heights, enclosed spaces, needle injections,, snakes, big cats, hippopotamuses - hell, not even death!
However, the mere thought of losing my independence and self-determination chills me to my very bones. The thought of going backwards, to a time when I could not hire my own employees (or, dismiss them if they didn’t meet my personal qualifications) only to succumb once again to the abuse and harassment of both the PSWs and the site managers of government funded agencies, makes me feel like (please excuse me for saying this) ending my own life.
Time for another pause. I’ll be back soon …
***
There’s a memory in the back of my mind, just itching to be exposed. Before I moved into the apartment building that had the Tobias House on-site agency, I used to live at a place called the Participation House Apartments. Same thing …. Complaints were written up, but rarely taken seriously.
Back then, Rob and I weren’t married, only dating. Rob would come over to my apartment and stay over for a few days and then leave. Mostly, I was on my own, with scheduled bookings where the PSWs would come and give me assistance so that I could live my life. Like Tobias House, admittedly, there were some people who I liked and who respected me. However, there were many others who acted like they didn’t want to be there, that the mere presence of their clients was a huge headache for them. They would roll their eyes at me if I asked them to move one small object from one spot on my small kitchen table to another spot on the table. They would claim that they didn’t have time, but I could see by the clock that there were still ten minutes of the shift left.
I can’t remember any actual cases of actual physical abuse. (These types of incidents may have happened, though, without me knowing about them.)
I do know that there was one traumatic thing that happened. to me under the agency of the Participation House Apartments that I’ll never forget.
One day, a new PSW, who was still only in her second week of training, was told by another PSW to give me a shower. Left on our own, the new PSW had trouble communicating with me right from the start!
She put shampoo on my hair, which immediately started running into my eyes, and then started spraying scalding water over my hair and body. Frustrated and in pain, I kept trying to point in the direction of my communication board so that I could try to ask her to please turn the heat down. She didn’t understand what I was trying to say, and so, she ran out of my apartment, leaving me naked in the shower.
When she returned, the site manager was with her. He looked at my naked body with an utter look of disgust on his face, making me feel small and ugly. Without talking to me or asking any questions, the site manager abruptly left. The new PSW trailed after him. I felt like I was a complete afterthought.
Fortunately, a few minutes later, another PSW, who I really liked, came into my apartment. She helped me finish having my shower, eat breakfast, get dressed and sit in my wheelchair. There were no problems!
Physical, sexual, and emotional abuse should not happen. Neglect should not happen. Unfortunately, these things still do happen under the agencies that provide 24 hour on-site services for people with disabilities.
As many of you might have noticed, I’ve avoided using the terms “caregivers“and “care services” in this blog post. To me these are oxymorons. If you’ve read what I’ve written in this blog post so far, I’m sure you get my meaning. Certainly, there are many PSWs within these agencies who do care about their clients, but it is those who do not care and are abusive - they are the problem!
The thought of losing my Direct Funding terrifies me! With Direct Funding, I am able to hire people who understand that their job is to be my hands, feet, and voice. They understand they assist me in my life, but they don’t control it.
With Direct Funding I can run my own art business, do banking and shopping, own 3 adorable cats, and just basically have a normal life.
I’m positive if you asked anyone who relies on Direct Funding to survive and thrive about the possibility of losing the funding they would have the same gut reaction as I do - fear and anger! It’s November 9th, which is approximately 3 weeks since I began this post. At first I felt mostly fear, now anger has grown over this time. If the government is planning on taking away this precious funding from me, and other people like me, they’d better prepare for a fight!
No more pauses.
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