Celebrating the Extensive Needs Services’ second anniversary 

Two years ago, the launch of the Extensive Needs Service (ENS) marked the beginning of something transformative for families of children and youth with complex needs in Ontario. For Grandview Kids families like Kerry’s, the ENS not only offered therapy, but also provided hope, direction and the kind of support that fundamentally changes lives. 

The ENS is a specialized program that provides timely, vital wrap-around support to over 1,100 children and youth with urgent and complex needs and their families in Ontario each year – close to home. It is jointly funded by the Ministry of Health and the Ministry of Children, Community and Social Services, and implemented jointly by Holland Bloorview Kids Rehabilitation Hospital, Children’s Hospital of Eastern Ontario (CHEO), and McMaster Children’s Hospital, along with nearly 20 community and regional partners across Ontario, including Grandview Kids. 

Before ENS, children and youth under 18 years with extensive needs had to rely on repeated visits to emergency departments, avoidable acute care admissions or repeat referrals to urgent/crisis services. While these options may address immediate, emergency or temporary needs, they have not provided the full spectrum of individualized care required. 

Kerry is the mother of triplet boys, 11-year-old Christopher, Daniel and Armand, each uniquely brilliant, diagnosed with autism spectrum disorder (ASD) and presenting a different mix of challenges and strengths. Alongside her husband, Jamie, and her mother, Memere Anne, Kerry has spent years navigating developmental therapy, school supports and the emotional rollercoaster that comes with raising neurodiverse children. 

All three boys were referred early to Grandview Kids for occupational therapy, but over time, further diagnoses revealed a more complex picture involving a range of ASD, attention deficit hyperactivity disorder (ADHD), Pathological Demand Avoidance (PDA), sensory processing disorder and, in Daniel’s case, Tourette syndrome. Despite these challenges, the family finds joy in camping together, gaming and playing sports like soccer and baseball. Still, their day-to-day lives can be overwhelming. “When you have three children on the spectrum and they all react to the world in different ways, sometimes one child’s dysregulation sets off a chain reaction. Triggers and meltdowns become a family in crisis.” The ENS stepped in right when the flood of high emotions and dysregulation felt unbearable. 

Since its inception, the ENS has undergone a remarkable transformation, as it was initially envisioned as a trial. The program, known for its flexibility and responsiveness, is now serving thousands of families and counting. Its evolution is marked by continuous learning and transformation. For Kerry’s family, the first therapy appointments involved all three boys in the same room with multiple therapists. It quickly became clear that a one-size-fits-all model would not work, especially with the boys’ different profiles demanding the service’s ability to evolve. 

“They listened to us. We gave feedback, and Grandview changed the plan. They adapted to our kids, not the other way around.” 

Therapists adjusted their approaches, shifting language and rephrasing demands in a way that reduced anxiety and increased engagement after further understanding Christopher and Armand’s PDA diagnoses. The program also introduced individual sessions alongside group work, allowing each child’s voice and specific needs to emerge more clearly, while still supporting sibling dynamics. 

One important aspect of the program is its focus on “co-design,” characterized by its emphasis on the family’s voice, which leads the way in shaping how care is delivered. Through the ENS’s co-design function, Kerry not only feels heard but also feels included, as Grandview Kids ensures that listening to her voice and acting on her feedback is a priority. ENS clinicians and program leads regularly invite families like Kerry’s to give feedback, participate in planning discussions and even suggest interventions. For Kerry, who lives with Irlen syndrome, ADHD, and possibly ASD herself, being treated as a valued member of the team was empowering.  

“I feel like one of the specialists in the room. They ask, ‘What do you think? Does this work?’ and then they actually listen.” – Kerry, parent of ENS clients at Grandview Kids 

This collaborative spirit has led to meaningful shifts in programming, from changing session structures to developing better emotional identification tools for the boys. These seemingly “small” changes have had huge ripple effects, even into the home and classroom. “Teachers at school have noticed a difference, and I attribute that to what they’re learning at Grandview.” 

The ENS team comprises many highly skilled clinicians, as well as a dedicated ENS Peer Navigator, Lisa D., who is deeply integrated into the program’s delivery model at Grandview Kids. Lisa is a parent of children with extensive needs herself. She is often the first point of contact for ENS families, including those waiting for services, offering support based on her lived experience combined with practical guidance. She reaches out, checks in and offers guidance so parents know they’re not alone. “Lisa has been there. She knows what it’s like to be in crisis, to be overwhelmed… [and now] offers direction, passes on knowledge and helps you navigate from a different perspective,” Kerry says. 

For Kerry, Lisa’s support was game-changing. From helping complete intake forms for all three boys (a massive task, especially given Kerry’s own reading challenges) to talking through emotional struggles and care planning, Lisa brought calm to chaos. “She took the paperwork, read the questions aloud and helped me answer one for each child. When you’re tired, burnt out and unsure which kid you’re even answering about, that kind of help is massive.” 

For Kerry, the greatest gift has been the reassurance that she is not alone and that she is doing a good job, even on the hard days. “There are times when I feel like I’m failing, like I’m not doing enough. But Grandview is my place to say, ‘Hi, I need help.’ And they’re there.” The ENS began as a pilot project but has evolved into a blueprint for how care can be delivered: personalized, flexible, co-designed and rooted in empathy and real-life experience. 

About the ENS 

The Extensive Needs Service provides wrap-around supports to children with urgent and complex needs and their families in Ontario – close to home.  

Jointly funded by the Ministry of Health and the Ministry of Children, Community and Social Services, the program is led by CHEO, Holland Bloorview Kids Rehabilitation Hospital and McMaster Children’s Hospital in close partnership with their community partners. 

Launched in 2023, the program provides access to evidence-based and trauma-informed care to meet the unique needs of some of the most vulnerable children in the province. The aim is to reduce barriers families may face navigating a complex health care system and accessing the right care their children need when they need it. To date, over 2,000 families have received support through the program. 

Learn more: grandviewkids.ca/extensive-needs-service