Paige Zaldin, 17, has cerebral palsy and is using her voice to speak up for kids and teens with disabilities who have been left behind during the pandemic. She experiences challenges with mobility, energy levels, depth perception and pain related to her disability and relies on personal support workers (PSWs) at school and at home, as well as regular outpatient physiotherapy.
COVID-19 closures and restrictions over the past two years have impacted almost every aspect of her day-to-day life, including the services she receives and her recovery from reconstructive surgery on her leg. Prior to the pandemic, the Toronto teen received regular checkups and in-person therapies through a specialized clinic at Holland Bloorview Kids Rehabilitation Hospital, where she has been both an inpatient and outpatient since the age of three. When the pandemic hit, all of those in-person services came to a halt. Face-to-face appointments became virtual Zoom visits. She lost access to care she was receiving from her PSWs, which was tied to her attending school in-person.
While she was given a home exercise program—which she performs regularly—it wasn’t the same as hands-on therapy with a trained physiotherapist and the specialized equipment found in Holland Bloorview’s therapy gym. “The home exercise program is only supposed to be one piece of the puzzle,” she says. “It’s not supposed to be the entire thing.”
Both of Paige’s parents were forced to step in and act as de-facto physiotherapists and PSWs. She says the gaps in her physiotherapy significantly delayed her recovery from the 2018 reconstructive surgery performed on her leg at The Hospital for Sick Children. She had been receiving weekly outpatient physiotherapy at Holland Bloorview to help her develop physical endurance and balance and help her learn how to walk again after the surgery. “This huge part of what was supposed to be my recovery was missing,” she says. It also set her back in meeting her developmental goals and she lost fitness because many physical activities are difficult for her to do outside of a physiotherapy setting.
Paige wants Ontario political leaders to understand that services such as PSWs and hands-on physiotherapy aren’t luxuries. They are critical to helping children and youth like her live with dignity and achieve their full potential. “They’re necessities,” she says. “Access to them impacts my future, my ability to be independent, my freedom and my ability to contribute to society.”
“My whole life has been impacted by the pandemic,” she adds. “I’m speaking up now because if I don’t speak for myself who will?”
Kids have indeed taken the brunt of this pandemic. One of the places we’re seeing the biggest impacts is in an area where we already had major access and waitlist issues before the pandemic: child and youth mental health. These impacts will be felt for years, as Dr. Hazen Gandy, a psychiatrist, who works in CHEO’s mental health unit explains.
Meet Laura, a mom of three from Sudbury. Her daughter lives with complex mental illness. As an advocate for her child, hear from her first hand about how challenging it is navigating services in the north, and how wait times and high staff turnover have impacted her daughter’s care.
Laura is balancing caring for her child, working and caring for her other two children.
She’s asking Ontarians to #MakeKidsCount at election time.
In many ways Lucy is a typical four-year-old. She enjoys playing with her younger brother Anthony and her older sister Grace. She loves colouring and riding her bike and scooter outside and the Lion King and Disney princess movies are her favourite things to watch.
But Lucy is not typical when it comes to food. Yes, it’s normal for toddlers and school-aged children to be ‘picky eaters’ in their younger years. In Lucy’s case, however, she is well beyond picky eating. She simply won’t eat the vast majority of foods.
When they went looking for answers and care, Lucy’s family faced challenge after challenge. And while the pandemic played a role, some of those challenges existed well before the pandemic.
Lucy and her family are still looking for answers and a path forward.
Lucy was born in August 2017. When she was around 18 months old, her parents, Candace and Shaun, noticed that she was a very picky eater. They didn’t think too much of it at the time, assuming it was normal, but as time went by and she reached the age of two and a half, Lucy had cut out, one by one, all of the foods that she had previously eaten. “She was down to about three or four foods,” says her mom, Candace. Milk from a bottle, peanut butter, and white bread, were the pretty much the only foods Lucy could tolerate. She would sometimes eat small amounts of strawberries, yogurt, or McDonalds French fries.
At a loss, Candace and Shaun consulted with their pediatrician several times. Eventually, Lucy was prescribed supplement drinks and then referred to CHEO’s Comprehensive Occupational Therapy Feeding Program, also known as the Picky Eater Program.
CHEO’s Picky Eater Program provides support to children who are fussy eaters, refuse food constantly, experience physical reactions (such as gagging and vomiting when eating or drinking) and are not growing as expected. It promotes safe, nutritional, and pleasurable mealtimes for children and families.
At the time, Candace was told it would take six to 12 months before they could get Lucy into the program.
Lucy was about to turn four and was still at a stage where the look, smell, and site of any food other than peanut butter and white bread and the other few “safe foods” would make her scream and gag. “We couldn’t eat near her or she might throw up,” says Candace. “We were beside ourselves, wondering what to do.”
The situation was dire, and Candace and Shaun were eager to get Lucy in the picky eater program to get their daughter some help. They had tried everything else. They’d only met with barriers and frustration. CHEO was their last hope.
When they got the call in November 2021, because of the pandemic, most CHEO outpatient programs were only being offered virtually.
“We did the four-week picky eater parent group from November to December 2021, and we didn’t make any progress,” explains Candace of the initial phase.
Things had not improved for Lucy. Candace, a pediatric nurse by training, worried that they had exhausted all the services that might help her daughter.
Desperate, and with the Omicron variant raging, Candace’s pleas for a follow-up appointment made their way to CHEO Occupational Therapist, Lisa Haley, in January 2022. Lisa, at the time, had been redeployed to another in-patient area at CHEO. Still, she took the time to schedule a virtual consultation with the family. “We have worked with Lisa for a couple sessions,” says Candace, “but we are still struggling with the same thing.”
“All this happened during Covid, everything was virtual. No one has actually seen Lucy in person,” says Candace. “Normally she would have been seen in person, at least once or twice. The feeding program would have been in person, there would have been a picnic in person, and the pediatrician would have seen her in person.”
It’s clear at this point that Lucy needs further evaluation. “She is not well and she is not coping well,” says Candace. “There is clearly something going on, but we don’t know what it is. We are not sure if it is autism, possibly OCD, definitely anxiety issues, behavioral issues and sensory issues.”
The family has been referred to CHEO’s Access team to explore next steps and assessments. But, again, the wait times are very long. It could take more than a year.
“We can’t even find someone outside CHEO to see her,” says Candace. The family is willing to pay for a private assessment, and contacted all the providers CHEO suggested, but lists in the community are very long. Out of desperation, they have even considered seeking medical help out of country, but realize the costs and logistics would be both exorbitant and complicated.
Candace and Shaun just want answers for Lucy. Ideally, they could go to one place and get Lucy the help she needs. They are deeply concerned and know that every day matters for their daughter.
“My greatest frustration is with the health-care system in general and COVID has just made it that much harder. You can’t get the services you need unless you wait years, especially when it comes to mental health,” says Candace. “Young kids need these services now. It wasn’t great before and COVID has just made it that much more difficult.”
As the mother of a daughter with multiple disabilities who needs around-the-clock care, Andrea believes families like hers have been left behind as Ontario emerges from the pandemic.
Her 13-year-old daughter, Bella, was diagnosed with global developmental delay, along with autism spectrum disorder and Pitt-Hopkins Syndrome—a rare genetic condition that impacts Bella’s intellectual development.
Bella loves joining her active family for activities including biking and jogging with the use of adapted equipment. She also requires one-on-one care and intensive behavioural intervention to learn certain life skills, such as how to drink from a glass, eat with a spoon, dress herself, or walk up and down the stairs.
Bella has been coming to Holland Bloorview Kids Rehabilitation Hospital since she was six-years-old. A specialized Rett’s clinic at the hospital provides a comprehensive approach to her health—doctors connect Bella with other departments and clinics, from dentistry to physical therapy.
But the pandemic delayed, or cancelled, many of the important services that Bella relies on, such as annual checkups or getting fitted for orthotics and a specialized car seat she needs for travel. Bella also required reconstructive dental surgery at SickKids Hospital after a fall, but that operation was cancelled because of the pandemic. These delays and cancellation have also been experienced by thousands of children across Ontario.
As a result, Andrea says families of children with disabilities have been left to fend for themselves in a fragmented system that doesn’t always understand the individual needs of children whose disabilities are varied and complex. Political leaders should “take the time to get to know us, take the time to talk to us and to know that we are part of the community that they are leading,” she says. “We would love to be seen as an asset. A lot of the times were looked at as a negative, that we’re a burden on the healthcare system.”
Although things are opening up across the province, there are still delays in accessing services. Many routine appointments remain online-only, such as mental health visits or appointments with doctors who treat Bella’s back for scoliosis. These virtual visits are extremely challenging given that Bella is non-verbal and uses an iPad to communicate. “When we’re virtual, it’s really hard for the doctor on the other end of the screen to be able to diagnose her, give us feedback, be able to connect with her physically and also emotionally,” Andrea says.
Andrea says parents need more organizations, partnerships and community-based programs that provide timely, integrated and holistic care. She’d also like to see policymakers find ways to meet the social, emotional, mental and physical needs of children with disabilities who have been significantly affected by pandemic-related delays and closures.
Mostly, she says, Ontario needs a system “to ensure that families like ours aren’t cut adrift when politicians are in a position to make decisions about how to support the disabled community. It would be great to be able to have a voice in it and for us to be able to share what type of supports we need.”