Mental health Sunnybrook Magazine - Spring 2019

Helping families navigate the health-care maze

Illustration of a maze

Since 2013, Sunnybrook’s Family Navigation Project has helped thousands of youth and their families find the mental health care and addiction services they need. Now, Sunnybrook is sharing its knowledge by collaborating with Humber College on a unique graduate program.

For years, the health-care system was a frustrating maze to Cathy Walsh.

She first faced difficulties finding the right kind of help for her daughter who grew up with developmental challenges. Then, when her younger daughter began grappling with mental health problems, Cathy again struggled to find the right programs and care for her child.

“The mental health care system is really complex,” says Cathy, who lives in Ajax, Ont., with her husband and two children. “And with mental health, there needs to be the correct fit between client and service provider for treatment to be successful.”

The situation took a turn for the better about two years ago, when Cathy connected with the Family Navigation Project (FNP) team at Sunnybrook. Within days, a family navigator at FNP found a residential placement with services and programs that matched her daughter’s needs.

“We had exhausted all resources in our jurisdiction,” she recalls. “By using FNP’s navigation services, we were able to find this residential placement outside of our region. Their help made a huge difference.”

Since launching in September 2013, FNP has helped more than 2,500 youth and their families, like the Walshes, find the health-care providers and programs best suited to their needs.

Growing to meet demand

The idea of FNP began with a group of families committed to make it easier for other families to get help for their loved ones. Over the years, the program has grown from two navigators to a team of 20, including an intake coordinator, a parent advocate with lived experience and 10 navigators – all working with Sugy Kodeeswaran, the executive director, and Dr. Anthony Levitt, the medical director. Navigators at Sunnybrook have diverse educational backgrounds and work experience, from social work to psychology to child development.

“Our goal since the project’s inception has been to provide direction for patients and their families, and at the same time act as a beacon for education and the dissemination of health-care system information,” says Dr. Levitt.

“We have excellent health-care services in this province, and there is a great deal of information available, but often people don’t know how to access the services or what to do if things don’t work out – or what to do if the youth themselves are not motivated to receive care. Too frequently the youth and their families get lost trying to understand and find resources in the system,” he says.

Health-care navigation originated in New York in 1990 to help cancer patients, and in Canada programs have also largely focused on cancer care. However, at Sunnybrook, FNP was established to help families who have a youth dealing with mental health and addiction challenges.

As with any start-up, seed funding was essential to the early success of FNP. Sunnybrook was fortunate to partner with RBC to launch the program, and it has continued to provide critical support through the annual RBC Race for the Kids.

“There are so many reasons people don’t talk about mental health or addiction, so it is often even harder for them to know what to do and what particular services to seek,” Dr. Levitt says.

“That’s why it’s so important to have someone who can help ensure you’re going down the right care pathway.”

This means much more than just handing patients a list of health-care providers and asking them to sort out which to contact. Effective navigation requires in-depth knowledge of the health-care system and a dedication to understanding the unique needs of each client. It also requires empathy for families as they juggle the logistics of getting the proper care, while coping with the physical and psychological challenges of a serious illness, and their own health, family and financial issues.

“Navigation also involves ‘getting in the boat’ with families to make sure they really do connect with the services we provide as options,” Kodeeswaran explains.

Navigator education

FNP’s first wave of navigators trained with Dr. Levitt, a psychiatrist, and with therapeutic placement professionals in the United States. Today, FNP has the depth of family navigation knowledge and experience to provide its own in-house training for new team members.

“Family navigators come into FNP with varied experience in supporting clients and families finding their way through the system. Even with this background, it takes several months of on-the-job training to become a skilled family navigator,” Dr. Levitt says.

Their education doesn’t stop there, adds Kodeeswaran.

“Our navigators are constantly learning from each other, learning about and sharing new resources daily,” she says. “We have our finger on the pulse of the system, so our knowledge is real-time and not restricted only to a database. Our focus is being on the ground, finding out about programs and constantly sharing information with each other.”

above: Cathy Walsh in class with Sunnybrook navigator and Humber College instructor Miriam Blond

Cathy Walsh (left) in class with Sunnybrook navigator and Humber College instructor Miriam Blond (right). (Photograph by Kevin Van Paassen)

Collaborating with Humber

This commitment to sharing systems navigation knowledge expanded even further last year, when Toronto’s Humber College reached out to FNP for help in developing a new Systems Navigator graduate certificate program.

Launched this past September with a cohort of 24 students, the one-year program – which combines in-class learning with 240 hours of field work – is designed to build skills for guiding patients and families through complex health-care and social care systems. Admission into the program requires a bachelor’s degree or diploma in health, social and community service or other health-related or human-services field.

“When our committee came together to design the program, one of the first things we asked was, ‘Does it have to be just health care? Or could it also address navigation needs in other systems, such as social, housing, Indigenous and criminal justice?’” says Colin MacRae, coordinator for Humber’s Systems Navigator program.

Students learn how to work with interdisciplinary teams in hospitals, medical centres, community services organizations, correctional facilities and other public and private entities, all while keeping the needs of patients, clients and their families front and centre.

With three representatives at the table, Sunnybrook’s family navigation team had a “large presence” on the Humber program development committee, MacRae notes. “After the committee was dissolved, we went back to Sunnybrook again and asked if any team members would be interested in helping us write the curriculum,” he says.

When the program was ready for launch, FNP clinical and research staff stepped up to teach six courses: systems theory, health literacy, professional self-care, professional communication, strength-based approaches to service and a field-based internship.

“We were thrilled when the folks at Sunnybrook agreed to help us draw up and teach the program,” MacRae says.

Teaching and learning

For Miriam Blond, one of two Sunnybrook navigators now teaching at Humber, the opportunity to share her knowledge with future system navigators was too good to pass up.

She teaches a strength-based approach to service course, which she explains is a relatively new approach in the field of health. “It focuses on resilience and a positive approach to concerns, rather than focusing on pathology,” says Blond. She came to family navigation from a background in social work and community mental health. “It’s looking at what people can bring to a solution and what’s working well for them that we can bring forward to achieve better outcomes.”

Like the other courses in the program, Blond’s teachings apply to systems beyond health care. But the students aren’t the only ones learning from the program, she says.

“I’m also able to bring the theories back to Sunnybrook, which helps to improve our practice,” she says. “My team has asked me to bring in academic material that we can use to review and evaluate our navigation model at Sunnybrook and potentially to translate into training material for our staff.”

Continued expansion

Patient navigation continues to expand, becoming part of the gold standard of care for chronic conditions such as cancer, diabetes, cardiovascular disease and mental illness – as evidenced by the creation of the Humber certificate program. Yet while the growing number of such programs means improved access to care for more patients, a lack of common standards for navigation itself could also lead to a fragmented navigation system in the future, says Dr. Levitt.

This is why Sunnybrook recently began speaking and working with stakeholders to explore building a system that ties together the disparate navigation services across the province.

“There’s a need to create a cohesive system of navigation,” Dr. Levitt says. “With our years of experience in family navigation, we’d like to contribute to this integration.”

Full circle

For Cathy, working with the FNP team at Sunnybrook has translated into a smoother journey through the health-care system and better solutions for her daughter. Cathy remembers how the navigator, having identified the right health-care facility, contacted the doctor in charge of the facility and explained her daughter’s medical and care history.

“By the time we talked to the doctor and the facility staff, they had a good background of what we were coming for,” says Cathy. “So it took away the stress of having to tell our story over and over again.”

For Dr. Levitt, “Cathy’s family journey is an example of how navigation is not simply about putting a bandage on a fragmented system, but rather that navigation is an integral part of an effective system. Navigation takes a family-focused approach to improve access to and transitions through the system, even when all the services are actually in existence. So there’s lots to teach our community and lots still to learn.”

For Cathy, her positive experience with FNP inspired her to pursue a new career.

After being out of the workforce for a decade, she had been thinking about rebooting her career but wasn’t sure what she wanted to do. Then, a navigator at Sunnybrook mentioned the new program at Humber.

“I said to my husband, ‘That’s the program I’ve been waiting for,’” says Cathy, who has a psychology degree and work experience in the insurance industry.

“I applied that same day.”