'The Extensive Needs Service has transformed our lives'

young smiling child wearing a blue t-shirt and dark blue shorts sits on an orange slide. He’s holding a plastic bag in his left hand and has a whistle in his mouth.

How the most vulnerable children with urgent and complex needs in Ontario finally have access to a program that meets their health-care needs

Kairo, who was prone to self-injurious and eloping behaviours, can now go to the park with his mom and had his first visit with the dentist ever in his life at the age of five. ‘Jennifer,’ who had a significant needle phobia that put her health at risk, can now tolerate having her bloodwork done. Matthew faces many developmental complexities such as autism, ADHD and anxiety, but now is feeling more confident in himself and is thriving.

These children are just three of more than 1,200 children and their families who have been receiving individualized and vital wrap-around supports through a unique program run by three children’s hospitals in Ontario: CHEO, Holland Bloorview Kids Rehabilitation Hospital and McMaster Children’s Hospital.

“The families we're caring for would otherwise slip through the cracks; they have complex needs and the system wasn't built for them. Extensive Needs is changing that,” says Taylor Johansen,
director of neurodevelopmental health at CHEO. “This first-of-its kind treatment is as precise and unique as each child it serves. These families have been through a lot and they deserve to access care that is designed with and for them.”

Launched in April 2023 and co-funded by the Ministry of Health and Ministry of Children, Community and Social Services, the Extensive Needs Service (ENS) proof-of-concept program – the first of its kind in Canada – is a servicethat works with children, youth and their families to provide individualized care that addresses their unique and complex health care needs, including developmental, behavioural, and mental health. It is designed to reduce barriers that families can face navigating a complex health-care system, and provides access to timely, evidence-based and trauma-informed treatment for some of the most vulnerable children in Ontario.

Upon intake, families are connected to an interdisciplinary care team to collaborate and develop personalized treatment plans aimed at improving a child’s abilities, mitigating challenging behaviours and addressing underlying health issues. The overall goal of the unique program is to augment existing services available as well as work with the child and their family to learn skills needed to support them in their home, school and community.

Each of the three hospitals tailor the program to meet the families’ needs. For instance, McMaster Children’s Hospital’s ENS program offers Family Check-Up, a strengths-based and collaborative service for the family members of the child or youth in the ENS program to support their physical and mental well-being.

“The clinician and parent work together to identify areas of strength for the family, and help the family identify what they need and set goals,” says Dr. Rebecca Shine, a clinical psychologist at McMaster Children’s Hospital.

“There would have been a time where I thought that my son wouldn’t still be in my house at this point. It was very volatile at the beginning, and I think we’ve grown together. It has strengthened our bond. I feel like I’m closer to him,” said Matthew’s mother, Christine. “The Extensive Needs Service has transformed our lives.” [Watch her story here].

In just over a year, Extensive Needs Service has had immeasurable impacts on the families served so far, expanded a community of practice, created new models of wrap-around care, and created the opportunity for underserved populations with complex needs to access extensive care in a streamlined manner.

Across the three lead hospitals, the program has demonstrated significant impacts, including:

reduced hospital stays for clients receiving services through the Extensive Needs Service program by over 90 per cent;

reduced emergency room visits by 80 per cent; and

reduced average missed school days by 90 per cent.

Families in the program also have reported their level of stress has fallen by nearly 40 per cent.

Moreover, the program has expanded its community partnerships across southern Ontario to give families easier access. At Holland Bloorview, this includes local community partners including the Children’s Treatment Network, Michael Garron Hospital, and Grandview Kids. Surrey Place provides dedicated service coordinators who work closely with families to access the Extensive Needs Service program at Holland Bloorview as well as providing expert support to navigate the health and social service sector for families with complex and urgent needs. McMaster Children’s Hospital has established a growing network of expert community partners across the Hamilton, Niagara, Haldimand-Norfolk and surrounding regions to ensure families have more access to the services they need closer to home.

Looking to the future, plans are afoot to expand the program provincially, particularly in northern Ontario and remote regions, and even across the country.

For Kairo’s mom, Nikki Pacheco, the extensive needs service program at Holland Bloorview has been transformative for their family.

Diagnosed with autism at the age of two, Kairo, now five, is a happy, energetic child with a big imagination. Since receiving services through ENS in January 2024, he is more social and feels more at ease with transitions.

 “I’m so thankful for the team’s efforts to see my child just be a child. I now have hope and truly have found a place that just understands.”

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'The Extensive Needs Service has transformed our lives'

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