“I felt like throwing myself off the bridge on the way to school.”
It is a daughter’s cry for help.
Roanne and her husband have been trying for months to get help for their daughter, Clarissa, age 14. Clarissa has mental health issues: she is restricting her food intake, she’s isolating herself from friends, and she’s often sad. Now, with thoughts of suicide entering the picture, her mother Roanne is beside herself with worry.
A referral to an eating disorders clinic gives Roanne little comfort: The wait time is about 12 months.
In desperation, Roanne starts frantically calling services she’s heard about from friends or found on the Internet, only to be told Clarissa’s not a good match: she’s too young; she’s out of the catchment area, or her illness is too complex. Not knowing where to turn, Roanne calls the Family Navigation Project at Sunnybrook Health Sciences Centre.
The Family Navigation Project is a new service that helps families of young people suffering from mental health issues and/or addictions navigate through the complex system to find the right resources.
It is the brain child of a group of parents who challenged the Sunnybrook Department of Psychiatry to find a solution to the anguish of watching a child suffer without knowing where to turn. “Parents have told us that they’ve waited months for help, only to be told once they get to the front of the line, they’re in the wrong line. This is unacceptable. These families are in crisis,” says Dr. Anthony Levitt, a Sunnybrook psychiatrist who has been working with those parents for the past three years to set up the Family Navigation Project.
It is estimated that as many as two million young people in Canada are struggling with mental health problems or addiction, yet only one in five of them successfully accesses the specialist services he or she needs.
[pullquote align=”right”]“They don’t realize the burden they have been carrying until they start to tell us. That’s when we get lots of tears,” says Naomi Algate, Sunnybrook navigator[/pullquote]“There’s a remarkable number of resources out there,” says Dr. Levitt. “It’s just a matter of finding them.”
What really gave the Family Navigation Project legs was the first RBC Run for the Kids, held last September at Sunnybrook. The run attracted more than 4,500 participants and raised $1.2 million in support of the new service.
It also raised awareness of the concept of “navigation” and how it can help families. This struck a nerve with people searching for help. “Living with a child who is battling addiction is like living in a war zone,” says Karen, mother of a son with ADD, addictions, anxiety and depression. “You never know when a bomb is going to drop. We bounced around for years to find a place. It is awful when you realize how sick your child is.”
After the run, Sunnybrook was so inundated by calls from parents like Karen and Roanne, that Dr. Levitt immediately set to work hiring staff and getting the project going, well ahead of schedule.
“We couldn’t say ‘we can’t help you; we’re not ready’,” says Dr. Levitt. “We had to start helping people.”
Sunnybrook hired two navigators in November 2013, just two months after the run. By March 2014, they’d added another navigator and a program manager to the staff, as well as several volunteer parent peer supporters. The Family Navigation Project has already helped more than 140 families, ahead of its official launch on June 18.
Dr. Levitt, who is the medical director of the Family Navigation Project, hopes funds raised at the 2014 run (to be held on Sept. 20), will enable the project to hire two more navigators and a knowledge broker. The knowledge broker’s job is to make sure that information learned about the mental health-care system is communicated back to the system, to address gaps in care.
The Family Navigation Project mainly helps young people between the ages of 13 and 26, who live in the GTA. The goal is to expand over time and to create a model for navigation that can be exported throughout the province.
Naomi Algate, one of the Project’s navigators, remembers Roanne’s call about Clarissa. (While these aren’t real names, the case is real.) “She was absolutely overwhelmed. She said, ‘I feel like the door keeps shutting. I’m worried we’re going to lose her’.”
It is not extraordinary, says Algate, to get calls from parents concerned for their child’s life. One recent call came from a parent whose teen had attempted suicide the night before.
Once the call comes, the navigator listens carefully to the story, to understand the specific and unique needs of the teenager and the family. Navigators ask about relationships with friends and family, school attendance, diagnoses and treatments that have been tried. Then they’ll ask the parents, ‘How do you feel?’ “That’s when we usually get lots of tears,” says Algate. “They don’t realize the burden they have been carrying until they start to tell us. They say, ‘I can’t believe you’re spending all this time listening to me. I haven’t felt this kind of support anywhere else’.”
Navigators have a background in addictions and mental health and a wide breadth of knowledge about what resources exist in the community, having visited many of the services personally. “The fact that we have been to see these clinics and specialists is very comforting for people,” says Algate. “It alleviates their fear when we tell them what to expect.”
For Clarissa, Algate found an eating disorders clinic with a much shorter wait time — six weeks — and a social worker to help in the interim.
The Family Navigation Project is driven in part by a Parent Advisory Council, made up of parents who are passionately committed to helping as many families as possible. Dr. Levitt calls the philosophy of the Project “compassionate persistence.” “Parents tell us, ‘Lists of resources are fine, but we need someone who will get in the boat with us and stay with us. We need someone who will keep trying to find answers, even if we feel demoralized’.”
Today, Clarissa is living at home and attending school; she’s an out-patient at the eating disorders clinic that Algate found for her and is seen weekly by a social worker. Algate also arranged for Roanne and her husband to attend a special parent support group, while their daughter goes through the treatment program. As for Clarissa, “she’s doing better; she’s in a program that’s just right for her, that is safe and that she didn’t have to wait a year for. The family is very grateful for the guidance and support they received,” says Algate. “Our goal is stay in the boat with the family until Clarissa has recovered.”
