Anita remembers the day her mother died like it was yesterday. Although it has been five years, the memory remains etched in her brain. With an unwavering tone, Anita tells her story.
It was about 8 a.m. on a school day. Knowing that the bus would be there in 20 minutes, then-13-year-old felt anxious lying in bed, waiting for her aunt or nurse to help her get ready as they do every morning. Anita was born with cerebral palsy affecting her legs, and sometimes her hands and speech, and requires 24-hour care. When her mother was diagnosed with cancer, her aunt uprooted her life in the Caribbean, leaving behind her children, to care for Anita.
Finally, the bedroom door opened. She knew her mother was very sick, but hearing the words was like a stab to her gut.
“I just remember myself kind of like falling back on the bed and screaming a little bit,” Anita says. “I didn’t really start crying until after the funeral because that’s when my whole family came to my house, and I’m thinking ‘Okay, everyone else is here, but where’s my mom?’”
While Anita’s aunt is willing to disrupt her life to provide full-time care for her, she often mentions that she would like to return to be with her family. Anita’s father is in a Toronto rehab for alcohol addiction.
On the second floor at the Bloor location of Safehaven Project for Community Living, Anita looks at home — confident, sometimes shy — but with a presence that says: notice me. Perhaps her outgoing personality stems from the care she has received for about six years at Safehaven, a recreational and leisure program that provides a break for children with disabilities and their families. While Safehaven has given Anita and her aunt time to relax, it has also given Anita a sense of belonging and community.
“I was kind of scared coming here at first, this is my first time being away from home,” Anita remembers. Now, she considers it a gift.
“Meeting the other kids was like a blessing because I’ve never really had a perspective on different disability before,” Anita says. “These people have different machines and they operate different and it’s kind of cool to watch because it gives me a perspective on how other people live.”
This will all end in a few months.
At age 18, Anita is already well into her transition to the adult system. This year, when she turns 19, she will not be able to seek respite at Safehaven anymore. Best case scenario would be if she were already on a waitlist for adult respite, which often is into the thousands. However, Anita is not well-informed about her transition, and so does not know whether she is on a waitlist yet.
There are no respite services specifically for young adults. Instead she will be lumped together with individuals of all ages including geriatric patients. She will not be able to continue seeing her lifelong doctors at The Hospital for Sick Children (SickKids), and funding for life’s necessities will drastically decrease.
Becoming an adult for many means voting, legal drinking, and independence. For individuals like Anita and her family, the onset of adulthood is a point of crisis where families are thrust into a new, confusing system with long waitlists, lack of specialty-trained and available healthcare providers, and pleas for funding.