When to get loud: tips on navigating the youth mental health system
Canadians are expected to send approximately 150 billion messages today as part of the Bell Let’s Talk campaign – Bell donates five cents to mental-health initiatives for every text, phone call or social media interaction that day – to help eradicate the stigma attached to mental illness. But as families overcome stigma and decide to seek help for their children, they find there’s no clear roadmap to start the process of getting help.
“It’s a daunting landscape to navigate because it’s a fragmented under-resourced system, very difficult to understand when you’re working in it, never mind when you’re approaching it from the outside in a state of panic,” says Natalie Markoff of Ottawa, director of communications and partnerships for Parents’ Lifelines of Eastern Ontario (PLEO).
Children’s Mental Health Ontario (CMHO), which represents Ontario’s publicly funded child and youth mental-health centres, says the system is in crisis with 28,000 kids sitting on wait lists that can be as long as two-and-a-half years. And emergency room admissions are climbing as kids who can’t get help end up in hospitals.
How does a parent find a foothold in this bleak terrain?
Kimberly Moran, CEO of CMHO and a parent who has navigated the system on behalf of her daughter, says that for parents trying to access mental-health services for the first time, the place to start is at your family doctor or one of the 80 mental-health walk-in clinics established by public providers over the past decade. Additional clinics have recently been established by Youth Wellness Hubs Ontario. All clinics provide children and youth with up to three counselling sessions with a mental-health professional. There is no fee, no referral required and no need to make an appointment.
“What we find is almost 50% of kids who come through a walk-in clinic actually need only one to three sessions,” says Moran. If more than three sessions are required, the youth will be referred to a publicly funded mental-health agency. “But that’s when parents can expect a waiting list.”
Parents living in southeastern Ontario, including the Ottawa area and Renfrew County, can call PLEO, an organization created by parents for the sole purpose of helping families navigate the mental-health system. PLEO, for parents of children up to 25 years old, is staffed completely by parents with lived experience, says Markoff.
Parents can call a helpline and get immediate support on finding their way through the system. PLEO has a one-on-one mobile support service that will send a worker to meet with parents in their own community, usually at a neutral place such as a coffee shop. There’s no fee, no waiting list and no referral required.
For parents in the Greater Toronto Area (GTA) with children aged 13 to 26, the Family Navigation Project matches families with mental-health services. Liisa Kuuter, the project’s program manager, says parents are assigned a professional navigator who will bring their case history — diagnosis, medications, treatment history — to a team of navigators and a consulting psychiatrist. The psychiatrist will give advice to the navigators, such as whether a psychiatric assessment is needed and what kind of treatment might be a good fit. For example, if cognitive behaviour therapy is recommended, the navigator will reach out to mental-health agencies in the GTA, find out wait times and then provide an introduction for the families.
Kuuter says the Family Navigation Project can sometimes connect to private-sector providers who offer a sliding scale of rates. She says if parents have the money and just want to find somebody who can see their child the next day, the Family Navigation Project can make that connection.
For parents who find themselves on a waiting list, Michele Sparling of Oakville, former chair of Parents for Children’s Mental Health, recommends online mental-health services such as Big White Wall, which offers self-help programs and anonymous peer support.
Many parents find that even if they are able to access treatment, their child refuses it. Sparling says parents may want to try to see if there’s an adult other than the parents to talk with the child. But even if there is still reluctance, she says, “at least get yourself equipped by taking a course such as Mental Health First Aid, so that you know what things you should be watching for.”
At the Family Navigation Project, Kuuter says a navigator will try to talk to the child on the phone. “It might be as simple as dispelling some myths about what treatment is,” she says. But if the child is still refusing, Kuuter says a navigator could help connect the child to a youth outreach worker.
You might still need to go to a hospital emergency room. Kuuter says depending on what the crisis is, navigators “can give you some tips on language you might be able to use.” For example, she says, parents might need to say, “I would like to see the psychiatrist on call.”
Sparling says that if your child is being discharged from hospital, “make sure you have an understanding of what the plan is and a connection to the agency where the follow-up will happen. And if they say, ‘No, no, they’re fine,’ and you really feel that they are not fine, then be that squeaky wheel.”
Joanne Sidorchuk, a manager at Cornwall Community Hospital, which surveyed parents across southeastern Ontario, says “the number one barrier we heard from families in the care of a child were the privacy consent laws.” Mental-health practitioners in Ontario are required by law not to disclose information obtained in confidence without the young person’s consent. That means that “youth, no matter what their age, have the right to talk to their medical professional without their parents,” says Sidorchuk.
Sparling says parents have the right to ask for information that relates to how best to support their child. Parents can also supply the service provider with information about the history and behaviours that may help with the big picture. Sparling says it’s important to ask a service provider right at the outset: “How do you engage families? How do we become partners in this process?”
Sidorchuk agrees. “When the families are involved, not only does the health-care provider have information about the observed behaviours and the history, they also have an ally in terms of recovery.”
When advocating for your child at school, Sparling advises talking to the teacher before the year starts and putting accommodations into the Individual Education Plan, the formal document that outlines what the school will do to meet the student’s needs. She says that if your child or youth is absent from school struggling with an illness for even a few weeks, returning to the classroom can be difficult. She recommends setting up a reintegration plan that might include having somebody take notes while the student is away or arranging for notes to be available online. If there’s anxiety around writing tests, ask if there is another way for the child to show they know the material.
All navigators stress that parents need to join a parent support group as early in the process as possible. “Don’t wait until you’re desperate,” Sidorchuk says. “If your child has schizophrenia, go to a schizophrenia support group.” It’s not just to reduce stress, she says. “It’s to make contact with the other parents who have been through it, who know how to navigate.”
Karen Black is fellow in the Dalla Lana Fellowship in Global Journalism.