For children with several medical, physical and developmental complexities and social vulnerabilities who need access to many different care providers, navigating the health-care system can be overwhelming.

Hamilton Health Sciences’ McMaster Children’s Hospital (MCH) recently announced we are one of three Ontario hospitals that will collectively receive $97 million from the province over three years to launch a pilot program to help children and youth with complex special needs, along with their families. The program is jointly funded by the Ministry of Health and the Ministry of Children, Community, and Social Services.

The Extensive Needs Integrated Pathway program was developed to address the needs of children and youth with multiple diagnoses who require a team approach across physical, mental, behavioural, developmental health, and social vulnerabilities. While in the early stages, this program will be closely linked to existing services within MCH, as well as
community agencies.

Putting youth and family first

“Far too often, young people with extensive needs get lost in between existing programs and services,” says Bruce Squires, MCH president.

“We are creating a new model which puts these children, youth, and their families at the centre with expert medical, developmental, and social services wrapped around them. This unique collaboration between hospitals and our two ministry partners targets this significant need. McMaster Children’s Hospital is excited to move forward providing children and youth with this important care, allowing families to focus solely on their child’s well-being.”

Participating families will be connected to a team of professionals, including doctors, social workers and behavioural consultants who work together to provide tailored support based on the individual needs of the child or youth, and their families.

One family that was recently introduced to the program says it has already started to help their child. They joined the program through MCH, receiving services out of HHS’ Ron Joyce Children’s Health Centre (RJCHC).

“Of course I jumped at the chance to be involved,” says the patient’s mother, who prefers that her family not be identified. “I was at my breaking point as I felt all doors were closing around me and my child, who was on waitlists and not seeing results. I struggled with many different obstacles, and my son was spiraling out of control due to his mental health issues, autism, ADHD, ODD (oppositional defiant disorder), and severe anxiety.”

The client and his family have been receiving support from his health-care team and have been connected to professionals who assist with his health-care journey.

“Right from the start he was connected to a psychologist and an ABA (applied behaviour analysis) specialist,” says the patient’s mother. ABA therapy focuses on building communication and daily living skills while reducing interfering or challenging behaviours. “I immediately felt like things were changing for the better.”

School has been challenging but the program helped give a voice to the patient and his family. “I felt unheard as a parent,” says the patient’s mother. “I spoke to the team and was immediately contacted by another support system led by an ASD (autism spectrum disorder) consultant who works with my son’s school to provide the support he needs by attending meetings, providing feedback to the school, and working on plans for safety and his IEP (individualized education plan).”

Erica Siebert, an integrated service consultant on this patient’s team, recognizes the need to connect families to both hospital and community services.

“Navigating health and community systems and services can be extremely taxing on our families, especially families caring for children with extensive needs,” she says. “Our role through the extensive needs program is to provide children, youth and their families with opportunities to feel empowered and supported while offering the right service at the right time.” 

The patient’s mother says, “This program has helped my son gain confidence, regulate and control his outbursts, and he now participates in a PEERS Program set up by his health-care team. I’ve always known that my child is creative, caring and can succeed in life, and this program and team are making this happen one step at a time.”

Parent check-ins

This program focuses on supporting families, ensuring all members involved with care have an outlet to access resources, and a space to look after their own physical and mental health needs.“Not only does my son get support but, as his parent, I also receive the support that I need as well,” says the mother. “The program has provided me with resources throughout this past year such as setting me up with a psychologist from the Family Check-Up program who helps me with my everyday parenting skills and gives me confidence that as a parent I am doing the best that I can for not only my children but for myself. 

The team has really taught me to take care of myself in order to be there for my children.”

Dr. Brittany Jamieson, a psychologist who works closely with this family, sees the value in having a team behind each family.

“The program’s team experience has allowed us to work effectively to reduce duplication in service, to provide consistent care and recommendations, and to bring together many perspectives and unique skillsets to address the family’s needs and concerns,” she says. “Families are doing the best they can and it is easier to do this with a united team supporting them.”

Giving hope to families

Such support is vital to children and youth with extensive needs and opens doors for other families experiencing similar situations.

“We’ve seen so much change and progress throughout this journey. I’m more confident as a parent,” says the mother. “I’ve learned so much about autism and the challenges my son faces every day with all of his diagnoses. He’s worked very hard on himself and it brought us closer together as a family.”

“I feel that this program will help other children and their families by providing a support system that is unique to each individual and family situation,” says the mother. “It will provide resources that will help navigate their child’s needs, and give hope to families who are struggling with the challenges of raising a child with autism, as well as providing hope to the individual with special needs. I have been lucky enough to participate in this amazing program, and I cannot say enough about how this program and my support team have made a difference in our lives.”

Siebert is pleased that the program has already made such a difference so soon after launching.

“The client and his caregiver continue to demonstrate resiliency and hard work as they engage with our team and the different services supporting them,” she says. “Seeing how a multidisciplinary team can come together and align their clinical goals while supporting and listening to their family’s needs demonstrates the need for this program.”