When dental care isn’t built for your child: A mother’s story of finding the right support

Ayven is 20 years old. She lives with Rett syndrome, a rare neurological condition that affects nearly every aspect of daily life – limiting speech, mobility and motor control and bringing sensory sensitivities, seizures and other medical complexities. Even something as routine as a dental visit requires careful preparation. But there’s so much more to Ayven than the complexities of her condition.

“Ayven is hilarious… a total troublemaker,” says Kim. “She’s highly sensitive and incredibly intuitive. She can’t communicate with words, but you’ll know what she wants to say just by looking into her eyes.”

Kim sees Ayven in all her complexity and personality. But too often, people like Ayven are reduced to their condition – or not seen at all, rendered invisible in systems not designed for them.

Dental care is one example. For people with complex medical or developmental conditions, access can be difficult, with patients often viewed as too challenging for conventional practices. There are few dentists with the specialized training required and clinics may be reluctant to take on patients supported through programs like the Ontario Disability Support Program due to lower compensation that does not cover the cost of care, combined with significant administrative demands.

As a result, many patients go without routine treatment, increasing the risk of pain and serious complications. Before finding care at Sinai Health, untreated dental issues led to a severe bone infection and hospitalization for Ayven.

This is the gap Sinai Health’s Special Care Dentistry Clinic was built to address.

A “dental home” for patients with special needs

The Special Care Dentistry Clinic provides care for adults with complex medical conditions, disabilities and sensory challenges who often cannot access treatment in traditional settings. Led by Dr. Mary-Ellen Cascone, it is one of the only programs of its kind in Ontario focused on adult care.

For many families, the shift into adult care is one of the hardest transitions. Pediatric systems tend to be more coordinated and supportive; once those systems fall away, families are often left to navigate a patchwork of services on their own.

“You spend years learning how to manage everything within pediatric care,” says Kim. “And then suddenly, you’re on your own.”

At Sinai Health, the program sits within the hospital’s Department of Dentistry, with access to expertise in oral and maxillofacial surgery, emergency dentistry, oral pathology as well a range of dental specialities. That broader clinical environment makes it possible to care for patients whose needs extend beyond what a traditional dental clinic can safely support.

It is truly a privilege to be part of the care team. So many of these patients have difficulty accessing care elsewhere. At Sinai Health, we can finally give them a dental home that they will never be turned away from.

- Dr. Mary-Ellen Cascone

 

That “dental home” is not just about access. It reflects an approach to care that is flexible, collaborative and grounded in respect for the patient as a whole person.

The difference was clear to Kim from the very first visit.

She walked into the appointment expecting to manage the interaction, as she had so many times before. Instead, she found herself watching something different unfold.

Dr. Cascone approached Ayven calmly, speaking to her directly and with clear respect. Without force, she worked to examine her, paying close attention to how Ayven responded.

“I started to step in, like I always do. And she just looked up at me and said, ‘Mom, I’ve got my own toothbrushing songs,’” recalls Kim. “She wasn’t being rude, she was confident. And in that moment, I thought – okay, she knows what she’s doing.”

For the first time, Kim didn’t need to take over. What took shape instead was a partnership.

“Like any parent, Kim is a strong advocate for her daughter’s care – as she should be,” says Dr. Cascone. “I’ve taken guidance from both mom and dad on how to best care for Ayven, and how to make her appointments as low-stress as possible while still being thorough. It’s about earning that trust.”

During check-ups, Ayven is often positioned upright, with frequent pauses to check in – recognizing that seizures and vomiting are common with Rett syndrome, and ensuring care can continue as safely and comfortably as possible. 

“We always have to make Ayven – not her teeth – our priority,” says Dr. Cascone.

Expanding training to meet the demand

Patients travel from across Ontario to access this specialized care at Sinai Health, often facing a waitlist for new patients that can stretch beyond a year. 

Dr. Cascone calls this reality unacceptable: “Living day-to-day without dental pain or infection should be a basic right.” 

Without programs like this, families are left with few options.

“We would fall through the cracks if not for Sinai Health,” says Kim. “We would become invisible.”

The challenge is not only to sustain this care, but to build more of it.

That means training more clinicians with the specialized skills this work requires. At Sinai Health Foundation, efforts are underway to raise funds for a dedicated Special Care Dentistry Fellowship, helping more providers learn how to care for patients like Ayven, both at Sinai Health and beyond.

It also means shaping environments that better support patients. In Ayven’s case, where each visit requires preparation and can quickly become overwhelming, features like a sensory wall can help reduce overstimulation and anxiety – creating a safer, more manageable experience for patients, caregivers and care teams alike. This is another area Sinai Health Foundation is working to support.

Kim knows how fortunate Ayven is to have found this care – not just for its technical expertise, but for the compassion that shapes it. She has spent years watching how easily people focus on the diagnosis and how much gets lost because of it.

“We talk about the disability and the limitations,” she says. “But we don’t talk about the parts that make Ayven who she is… the funny parts, the personality, the magic. When you’ve got somebody who’s locked in a body like Ayven’s, you have to dig deeper. You have to take the time to find those moments – and once you see them, you love them.”

That’s what makes this care so rare.

“Dr. Cascone truly sees Ayven – and she sees me,” Kim says. “I’ve met very few people with that skill set. Having more people like Mary-Ellen and her team out there…I can’t even tell you what that would mean. It would change everything.”

Support compassionate care for all

For nearly 50 years, Sinai's Department of Dentistry has stood as the only centre of its kind in Ontario. Adult patients with complex and high-risk medical conditions, disabilities and trauma are referred from across the province.

But with soaring waitlists, sustainable funding is key to advancing our groundbreaking care, research and training capabilities to help meet the colossal need. 

Join us in our mission to ensure a place where all patients receive the dental care they deserve.