For children and families living with complex neurodevelopmental conditions along with mental health, intellectual or physical disabilities, frequent emergency room visits, repeated acute care admissions and restricted participation in school and family life, are just some of the challenges they often face. Limited access to care and delays in receiving services can make these difficulties worse and can cause significant safety concerns and caregiver stress and burnout.

To better support this vulnerable population, recent funding by the Ministry of Health and the Ministry of Children, Community and Social Services, led to the launch of the Extensive Needs Service (ENS) in 2022. Led by Holland Bloorview Kids Rehabilitation Hospital, Children’s Hospital of Eastern Ontario and McMaster Children’s Hospital along with their community partners, this proof-of-concept program connects children with urgent and complex needs and their families with individualized care and support–closer to home.

Through the innovative ENS Program, families have access to a multi-disciplinary team of professionals, including physicians, social workers, occupational therapists, behavioural support workers and other care providers. Respite care services are also considered a crucial component of this program to extend ENS support into patients’ homes.

In order to deliver in-home relief services for the children and families enrolled in Holland Bloorview’s ENS program, the hospital partnered with the not-for-profit home care organization VHA Home HealthCare (VHA).

“The first-of-its-kind in Canada, this ENS model places children, youth and their families at the centre of their care, so that medical, developmental and social services can be wrapped around them,” says Samantha Jani, Manager of Operations, Responsive Community Care at VHA

“Through this partnership, qualified behavioural support workers (BSWs) allow for much-needed relief and rest opportunities for these families,” she adds.

“When we imagined what a wrap-around model of care would look like–not just for our clients but for their families and caregivers as well–we knew that access to high quality, specialized respite would be an essential component. Given VHA’s long history of providing compassionate and high-quality in-home care, they were a natural fit for this program,” says Kathryn Decker, Senior Director of Extensive Needs Service and Inclusion Programs at Holland Bloorview.

Amanda Nichols, Community Supervisor of the ENS Respite Program at VHA has heard stories from many clients in the community that underscore the deep need for these types of services.

“Our clients come to us because they haven’t been able to access care through other supports. I hear about endless waitlists and services being cancelled because of a child’s ‘extreme’ needs. Often these children can’t attend school because it’s not safe for them or others,” Amanda says.

“Support for these families is a crucial component to prevent exhaustion, burnout and other significant physical and mental health concerns,”  she says.

Minji Ye, a behavioural support worker within the program, experiences the direct impact of this support on a regular basis. “Many of these families also have social vulnerabilities on top of their caregiving demands. Financial pressures, language or cultural barriers, or mental health struggles can increase their levels of burnout and isolation,” she says.

“I recently worked with a mother of five children who was also attending school herself. Her child with extensive needs required direct, hands-on care at all times to keep her safe,” Minji says. “The mother never had any time to herself and during our visits, she was finally able to focus on her schoolwork and other demands.”

“BSWs provide these parents and caregivers an opportunity to really take a break because they know their children are safe, engaged and in qualified hands. When our visits were done, this mother cried tears of gratitude and said that this program had changed her daughter’s life—as well as her own. Even over the short-term, we know that this type of support really does make a huge difference,” Minji says.

Many families in the ENS program have shared how discouraging it has been to try to navigate the complex health system for years with numerous failed attempts at getting the support they need at home.

“Parents have told me that this program has changed their minds about accepting respite care services because ENS is providing the right support. They are really relieved that it is available,” says Amanda.

When children can access services that are specific to their needs, and the well-being of their family is also supported, health outcomes improve. Looking forward, there are plans to expand the Extensive Needs Service into more communities, including Northern Ontario and other remote regions, as well as across Canada.

“Our hope is that funding will continue to be prioritized to meet the needs of these vulnerable and underserved children and families,” Samantha Jani says.

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