Transitioning from Hospital to Independent Living: Overcoming Hurdles
By: Ryan Lythall
Since this is my first time writing for Whimble, I figured I’d start with an introduction…
My name is Ryan Lythall. I was born in 1975 with a neuromuscular condition called Nemaline Myopathy. When I was six months old, I suddenly stopped breathing, and my Mother rushed me to a local hospital called the Children's Hospital Of Eastern Hospital in Ottawa, Ontario.
When I arrived, I was put on a ventilator, and a tracheostomy tube was inserted into my neck. At the time, there wasn’t much information about Nemaline Myopathy. The Doctors had no idea how to care for me and told my parents that I’d only live for a year.
Overcoming Hurdles
During the ’70s and ’80s, both wheelchair-accessible housing and long-term care homes didn’t exist. For that reason, my parents couldn’t provide round-the-clock care, so the Children's Hospital Of Eastern Ontario became my home for the following nineteen years.
From 1975-1994, I slept in a hospital bed surrounded by Doctors, Nurses, and children with various medical illnesses. As I got older, I began attending school at CHEO and later an Elementary School in downtown Ottawa.
When I first started going to school, one of the nurses from CHEO would accompany me. A few years later, a change took place, which eventually paved the way for me to become an active, outgoing community member. CHEO allowed me to have my own PSW.
A Smooth Start and Ongoing Challenges
This person’s job was to come with me on the school bus and look after my medical and bathroom needs. During PD Days, we would go on outings, such as to the mall or to see a movie. At the end of the day, he would leave, and I’d spend the evening either in my hospital room or hanging out with one of the patients. In 1992, my Mom and I were approached by CHEO. At this point, I was 17 years old and beginning to age out of their system.
I was given two options: one, I could move to a long-term care hospital, or two, move into a group home.
Neither option sounded appealing, so I made a 3rd option.
I wanted something that every teenager wanted but rarely had to overcome hurdles to achieve. The choice that I made was to live on my own.
As soon as I said those words, my mom and I knew we had a long road ahead. One of the many obstacles in our path was figuring out how I’d be able to arrange to receive round-the-clock care, both in my home and when I went out. Along with the physical aspects, there were also the financial aspects. Which agency, or agencies, would be able to afford 24/7 care? What would be the total cost? Also, would they find enough PSWs needed to assist me and tend to my medical needs?
From 1992-1994, my mom and I worked tirelessly to get the needed answers. We mailed and hand-delivered letters to leaders at all three levels of government. After three years of pleading with government officials and through the media, my dream finally came true.
From Hospital to Home
On March 16th, 1994, at the age of 19, I moved out of CHEO and into my first apartment.
For the first ten years or so, for the most part, things ran smoothly as far as staffing went. People were showing up on time and eager to assist me with what I needed.
As the years went by, things slowly began to change. Staff members moved on, which led to trying to get other staff to fill in while we started looking for new staff.
Due to a severe shortage of PSWs, I have recently been forced to hire a PSW privately. As a result, their payment comes directly out of my pocket. As an ODSP recipient, it leaves me with even less money to get me through the month.
Sharing the Journey
For the past few years, I’ve worked been working at Ottawa Life Magazine as a columnist. Each week, I write about some of the ongoing challenges that people with disabilities face.
Turning to On-Demand Care
Earlier this year, I started hearing about Whimble, and their services. I admit that I was skeptical at first. I was skeptical due to the amount of people with disabilities who are also facing their own struggles with a shortage of PSWs.
However, thanks to Whimble, and their on-demand care program, I will one day be able to personally request one of their PSWs to assist me, or possibly fill-in when nobody is available to come.
To me, this means that I’ll spend less time worrying, and more time being me. I’ll be able to go out more often, get errands done, and be able to do more of the things that I love.
With the help of Whimble, I may even be able to breathe a little easier.
I’m both honoured and grateful to also be a part of Whimble. I look forward to being involved in their fantastic vision. Thank you for allowing me another platform to share my experiences!
We’re live in Ottawa! Join our beta here if you’re in the city. For those outside of Ottawa, join the waiting list here so we know where to expand next!
Be sure to follow Ryan:
on Twitter: https://twitter.com/rolling_enigma
on Instagram: https://www.instagram.com/rolling_enigma/
Header image courtesy of Unplash | @christya_v