27 years later and how things have changed

On March 16, 1994, I left the Children’s Hospital Of Eastern Ontario after living there for nineteen years, and I moved into my own place.

For most, being nineteen years old and moving into their own place wouldn’t be a big deal. Many people have done it and for the most part, it’s a part of life. We grow up and want to leave the nest so to speak. When you’re a person with a disability though, things can become much more difficult and when you realize that you can move out and you found a place that meets your needs, you have even more reason to celebrate.

As mentioned, I lived at CHEO for nineteen years. Outside of my first six months of life and two class trips to Montreal and Toronto, I slept and woke up in my hospital room. As I got older, I did attend school like everyone else and went out around Ottawa here and there. I always returned to CHEO at the end of the day.

I often get asked what was it like to live there. It certainly wasn't easy. I experienced seeing many things that I wouldn’t wish upon my worst enemy. Some of those images still haunt my mind sometimes. I also made a lot of friends, but many passed away due to various medical reasons.

Not all was doom and gloom though. The staff did their very best to give me the best childhood possible while taking good care of me. I always had the best toys around and as some of you probably remember, 80s toys were pretty amazing. My mom and other members of my family visited often, which really helped. I also need to mention that thanks to Social Media, I’ve been able to reconnect with some of the kids I grew up with.

By now, you’re probably wondering how I managed to move into my own place. Here’s the story, well, part of it anyways.

Back in 1991 or 92, CHEO approached my mom and I bout the fact that I’d be ageing out of their system soon. Basically that meant I would no longer be considered a child anymore and therefore I’d need to move out. At the time, I was sixteen or seventeen.

CHEO gave me two options. I could either live in a group home or a long-term care hospital. Neither choice appealed to me, so I chose a third option. I wanted to live on my own.

So, with the support of my mom and one of my long-time PSW, we all started writing letters to government officials. In many cases, I personally delivered the letters to make sure they received them.

After two or three years of writing letters, phone calls, media coverage etc, I was given the green light. The one thing that convinced the higher-up was when we informed them that it’d be much cheaper for me to live independently instead of in a group home or a hospital.

One of the significant issues, and still very much, is finding an agency that could supply me with enough PSW to cover my 24-hour care that I “require.” There’s a reason why I use quotes which I’ll get to in a bit.

So, once an agency was found and it was set-up, I was good to go. Luckily, I never had to apartment hunt. The agency that I’m referring to also operates in several apartment buildings in Ottawa.

In each building, there are between 10-20 people with various physical disabilities. If they need assistance, they call one of the on-duty PSW, or they can also make a booking. For example, a regular time to eat, get up, go to bed etc. etc.

Things are a bit different for me because I have 24/7 care. There’s always someone in my apartment unless I have company. I do have the option to ask them to leave and to come back later.

To some people, especially to PWD, this may sound great, and sometimes it is. However, there are drawbacks pretty significant drawbacks.

One being is that I get very little privacy. That also includes anytime that I go out. I can’t just take off and go for a roll by myself or have any real alone time.

The other huge issue is because I “require” 24/7 care, it also means that finding enough PSW can be pretty challenging, and it seems to be becoming more difficult with each passing year.

As stated before, MUCH more NEEDS to be done as far as recruiting PSW. PSW deserves more money and other very simple and basic needs. It truly angers me how poorly PSW are being treated in Ontario, which profoundly impacts people with disabilities. I do recall having times during the 90s and well into the 2000s where staffing wasn’t an issue, at least not for me.

Nowadays, it’s much scarier. If one of my caregivers calls in sick and no one can come in, my only option is to go to the hospital. Thankfully, that hasn’t happened yet, but the possibility is always there. It’s a conversation that I’m currently having. I’ll possibly go into more details at a later time if I need to.

Earlier I mentioned that I “require” 24/7 care and needing someone around me. Thanks to modern and upcoming technology, that may not be the case for much longer.

I’m currently in the process of figuring out a way for me to be able to contact a PSW that works in my apartment building to help me when needed. Hopefully, that’ll be soon.

I shouldn’t need to live in constant fear just because I want something that everyone has a right to.

A place to call my home.