Give medically fragile adults the COVID-19 vaccine now, advocates urge

Medically fragile and developmentally disabled adults who live in community care or with their families should be on the list for the first phase of the COVID-19 vaccine rollout, advocates say.

'It would mean everything' to be able to hug her brother again, Jin Cha says

Alex Cha lives in a Participation House home, where he gets 24-7 care and support. (Supplied by Jin Cha)

For years, Jin Cha fought for her younger brother Alex to be given a place where he could get 24/7 medical care, social supports and a home-like setting that he could thrive in. 

Alex Cha, now 52-years-old, is thriving at Participation House, a home-like setting with support services for his cerebral palsy and other medical needs. But the fact that he doesn't live in a long-term care facility or isn't sick enough to be in a hospital means that he doesn't qualify for the the first phase of the COVID-19 vaccine delivery. 

"We were strongly recommended to look at long-term care for my brother, because he needs help with everything. But my mom couldn't do that, and when he was accepted to Participation House, she broke down and said, 'Now I feel I can die and be at peace,'" Cha told CBC News. 

"He is so happy where he is, but if he was in long-term care, he would be getting the vaccine right now." 

Cha is able to see her brother but is terrified of exposing him to COVID-19. Many of their interactions were at first through virtual meets, but that got frustrating for everyone. 

'It would mean everything'

"If he got the vaccine, my mom would be able to hug her son. It would mean everything. It would mean absolutely the world," Cha said. "This fight is not just for my family. We know that Alex is where he needs to be and we trust wholeheartedly that he is getting the best care possible, but it's not the same, not being able to hug your loved one." 

Cha is worried for her brother as well as her mom, who is in her 80s. The situation, as she sees it, is life and death. 

Alex Cha with his mom, Jeong Cha, during his first Christmas at Participation House, where he was asked to DJ for the annual holiday party. (Supplied by Jin Cha)

Those who advocate for medically fragile adults and those with severe disabilities who live either at home or in community placements such as Participation House or Community Living agree. 

Ontario's rollout of the vaccine through institutions such as long-term care facilities or hospitals means those with chronic, complex medical disabilities, and those who care for them, are not on the list to get the vaccine in the first phase. 

"This approach doesn't take into account the medical conditions and risk factors of medically fragile individuals living with families or in community settings," said Brian Dunne, executive director of Participation House Support Services, which provides medical and other care to about 300 individuals with complex needs in 60 small-scale residential homes across southern Ontario and Ottawa.

"Through the care provided, severely frail individuals and individuals with developmental disabilities are able to live in community, which helps keep them safe, reduces health care costs and adds to their quality of life," Dunne said. 

Individuals with Down syndrome, for example, are at greater risk of becoming severely ill if they get COVID-19 and are five times more likely to be hospitalized and 10 times more likely to die, despite being 10 years younger than the average hospitalized COVID-19 patient, Dunne said. 

Jin and Alex Cha in a condo before Alex moved into Participation House. (Supplied by Jin Cha)

"Despite the known risks for individuals with medical and complex needs as well as those with developmental disabilities, unless they live in a long-term care home or hospital setting, they have not been prioritized to receive the vaccine," he added. 

"The potential consequence of overlooking medically fragile adults and the families and front-line staff who support them in the first phase is very costly in terms of unnecessary hospitalizations and deaths for hundreds of Ontarians."

Dunne and Cha, and other advocates, are calling on the province to include medically fragile residents, individuals with severe developmental disabilities, their caregivers, families and the front-line health care workers who support them, in the first phase of vaccinations, regardless of where they live.