Access to treatment delayed

You've got the diagnosis: Your child has a mental health problem. Treatment is coming, but not for months. What now?

Nine-year-old Liz Fisher* was always a nervous child, but nothing that seemed out of the ordinary…until the day she refused to eat the delivery pizza, convinced it had been poisoned. Next came the constant handwashing that left her hands red, chapped and bleeding. “If we tried to stop her, she was frantic — so frantic she would become violent,” says her mother, Daisy.* Then Liz refused to go to school, afraid of being left there by her parents.

It was clear to Daisy and her husband, both social workers in the mental health field, that something was terribly wrong. They sought help for Liz early on, but it was six long months before she would receive treatment — for what they found out was obsessive-compulsive disorder — and start to recover.

Liz’s story is not unusual: More than 800,000 Canadian children (about 15 percent of all kids) suffer from mental health disorders, most commonly anxiety, depression, conduct disorder and attention deficit hyperactivity disorder (ADHD). Whatever the problem, early treatment can help many children to fully recover or, at the very least, learn to manage their symptoms to live full and productive lives.

But early treatment is near impossible with the severe shortage of services for children’s mental health. Many families face wait-lists that last weeks, months, sometimes years. This delay can be frustrating, even terrifying if you don’t have a diagnosis, and don’t really understand what’s wrong or where to turn for help. But you don’t have to sit idly by, waiting and worrying about your child. Here’s what you can do now to make the wait time count.

Search for services

There is no master list of child mental health services in Canada. “Resources are a patchwork. Services vary depending on which province you’re in, even which county you’re in,” says Michael Cheng, an Ottawa child psychologist and co-founder of the eMentalHealth.ca project. So it will take some legwork to find out about services in your community.

Here’s how to get started:

  • Book a visit with your family doctor or paediatrician to ask about services near you. Many doctors can put you in touch with a network of mental health contacts.
  • See your child’s teacher and principal. Ask if your school board has a mental health worker who can provide services or refer you to someone who can.
  • Ask about an employee assistance program through your or your partner’s employer.
  • Consider private treatment. Wait times are usually shorter, but can be pricey — anywhere from around $40 to $180 an hour, depending on the therapist. Third-party insurance (through work, for example) may cover a portion of these fees. Ask about a sliding fee scale — some therapists may lower their rate based on your income.
  • Use the Internet (go to Todaysparent.com/mentalhealth for a list of helpful websites).
  • Look to your university. If there’s one in your area, contact the psychology or education department to ask about on-campus services. At the University of Calgary Applied Psychological and Educational Services (U-CAPES), more than 20 full-time psychology graduate students, supervised by registered psychologists, provide mental health assessment and treatment to the public. Wait times for services are somewhat shorter at U-CAPES, running three to four months on average. Fees are lower too. “Everyone who comes through our doors pays a fee, but it’s usually a half or one-third the cost of private services,” says director Kelly Schwartz. What’s more, all fees go back into scholarship programs for the students.

Be strategic

Play the waiting game to your advantage. Go on several wait-lists at once, in case one agency can see your child sooner than another. “Even if you think you might not need a service, get on the wait-list,” advises Keli Anderson, executive director of The F.O.R.C.E. (Families Organized for Recognition and Care Equality). “You can always turn it down when you get to the top of the list.”

Plus, be sure to tell agency staff that if someone ahead of you cancels, you and your child will be available at a moment’s notice. And be sure that you check regularly for any cancellations. Remember to ask other agencies to remove your name from the list once your child has started treatment.

Don’t be shy about tapping family, friends and colleagues. Working in the mental health field, Liz’s mother, Daisy, had strings to pull, but was determined not to jump the queue. “Looking back,” she says, “I should have done everything I could to get help earlier.”

Be persistent but diplomatic. “I’ve seen parents who are aggressive about demanding treatment and it jeopardizes their child’s care,” says Daisy. “It’s a tough line to walk when you’re frightened, but you have to be graciously assertive.”

Seek support

If your child had a broken leg, you wouldn’t think twice about asking for treatment. Not so for mental illness. Some parents may be embarrassed that their child has a mental disorder or perhaps they fear that their child will be branded by their disability. Other parents may worry that it’s somehow their fault and blame themselves for their child’s suffering. The stigma of mental illness can be a powerful barrier to seeking and getting help. It can also be isolating and self-defeating.

That’s why it’s critical to seek support, whether it comes from family, friends and spiritual advisers, or from a self-help or peer support group. These groups allow parents to connect with others who have been down the same path — to share information, offer comfort, alleviate fears and put an end to the blame game. “Parents need to band together, not judge each other,” says Anderson.

Although there is no national parent support group, you can access various provincial groups, such as The F.O.R.C.E. in BC (bckidsmentalhealth.org)and Parents for Children’s Mental Health in Ontario (pcmh.ca). In other provinces and territories, contact your local Mental Health Association.

Be informed

Learn all that you can about your child’s mental disorder. There are excellent sources of information available online and in the library. Even if you’re not sure which disorder your child has, reading up on children’s mental health, in general, can help you feel informed and empowered.

Be a therapist

“Given that our services are so tragically underfunded, parents have every right to be helpful and therapeutic while their kids are on wait-lists,” says Cheng. If your child is anxious or depressed, you could try a type of counselling (called cognitive behavioural therapy) that can help your child understand and alter her thoughts and actions. The Healthy Transitions program (child-youth-health.net)is a free online program based on the principles of cognitive behavioural therapy. It was originally designed for teachers, but can be easily adapted for use at home.

Take a look at the free online MindMasters Program from the Child & Youth Health Network for Eastern Ontario (child-youth-health.net). With this program, you can teach your child positive living skills, such as relaxing at the doctor’s office, managing anger so no one gets hurt, focusing on getting a task done, or keeping upbeat even when life is hard. These are skills your child can use anytime, anywhere, no matter what the mental health problem.
Manage day to day

Constant daily stress can make anxiety, depression and other problems worse. So try to lower stress levels in your child’s life by keeping to a routine of healthy meals, lots of sleep and regular exercise. Consider talking to your child’s teacher about reducing homework or having flexible start and finish times for school to further ease stress.

Even though you’re anxious and preoccupied with your child’s mental state, it’s still important to set appropriate expectations for her behaviour. Just bear in mind that expectations may need to be lowered, especially when it comes to an illness like depression.

Don’t forget about yourself. “To help their children, parents need to help themselves first,” says Cheng. Take the time to get enough sleep, eat well and exercise. Try to take a break, on your own or with your partner. If you’re overwhelmed, ask for help from family and friends.

Be on guard

Monitor your child’s condition and be sure to inform your agency of any change — it could mean you will get help sooner. Look for any signs that your child may be thinking of suicide: Making comments like “When I’m gone…” or giving away belongings are such warning signs. (Read more on handling a crisis at drcheng.ca.) If you’re concerned about suicide, take your child to the closest emergency department, call 911 or check phone listings for your local crisis hotline.

Watch the future

Innovative programs in child mental health care are cropping up in Canada, but they’re not yet commonplace. A shining example is the Family Help Program in some areas of Nova Scotia that provides almost immediate help over the phone to children with mild to moderate mental health problems.

To access the program, families can be referred by a mental health agency, health professional or, in some areas, even call themselves. Within 24 to 48 hours, children are assessed and assigned to a program that will teach them new ways to handle their problems. That can mean anything from relaxation techniques to cope with anxiety or positive parenting to deal with behavioural issues. “We’re empowering both parents and children to develop life skills,” says clinical program manager Patricia Lingley-Pottie.

The program has three parts: DVDs, videotapes and audiotapes that demonstrate skills; exercises that give you the chance to put the new skills to work; and a trained coach who tracks progress, problem-solves and supports families — all by phone.

One of the best things about Family Help is the convenience. Families can take part in the program at home, at a time that’s best for them — even at night or on the weekend.

The program has been hugely successful. Sharon Brown,* who took guardianship of six-year-old Josh* in 2008, was referred to the Family Help Program after Josh became aggressive — hitting, biting and cutting his clothes. “I was nervous at first,” Sharon says. “I wondered how someone could help us over the phone.” But the program has been a lifeline for Sharon and her family. “It’s been a turnaround for Josh,” she says. “He’s a totally different child.” Josh has done so well, in fact, that he won’t need to go on to more formal therapy.

Some day the Family Help Program may be open to all Canadians. According to Lingley-Pottie, they have the capacity to expand to other provinces, but they are lacking the funding to do it. Stay tuned. This program and others like it promise an end to long waits for many families in need.

Until that happens, parents will have to rely on their own wits and resources. “Hang in there and do all you can,” says Daisy. “The best way to move forward is to be your child’s best therapist and best advocate.”

*Names changed by request.

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