LIVING IN CRISIS
Services lacking for teenagers with complex mental health issues
Just give him up.
The advice, given to Dale Lee by one of the many Windsor police officers who have responded to her home in recent months, makes her seethe and cry at the same time. “I will not just give him up,” says the 57-year-old grandmother. “I can’t just give up on him.” She is referring to her grandson Mark, a 14-year-old boy with mental health issues paired with developmental delays that make him prone to fits of violence. His father — Lee’s son — is dead. The boy ’s biological mother left the hospital after his birth and never tried to claim parental rights. Lee has raised the boy since he was four months old. When Mark was younger and would fly into rages, Lee would wrap his tiny arms around his body and just hold him from behind until he calmed down.
He is bigger now. And with puberty, the anger is worse. Mark was diagnosed in kindergarten with severe attention deficit hyperactivity disorder. Later diagnoses include a learning disability, intellectual delay, oppositional defiant disorder and disturbance of attachment. While there is a sparkle in his eyes when he smiles, Mark does not show affection. He can’t tolerate being hugged.
He barely sleeps at night and has trouble making friends. He used to believe he was Spider-Man.
These days, he is convinced he is part elephant.
Lee lost her job as a trucking dispatcher six years ago due to the countless times she was called by her grandson’s school saying he was being too unruly and she needed to pick him up. Then came a cancer diagnosis that cost her part of her lung, then surgery to repair an aneurysm in her brain. She is caring full-time for another grandchild and in November, moved her frail, 87-year-old uncle into her Remington Park home. Mark has been under the care of a psychiatrist most of his life. He has darkened the doorstep of every agency locally that held a promise of help, Lee says, rhyming off the list.
“We’ve done a gazillion angermanagement courses …. We’ve had all the services Windsor and Essex County has to offer …. It’s not enough …. I’m in crisis.” There are dozens of adolescents like Mark in Windsor and Essex County with complex special needs, according to local service agencies.
There are 40 in the care of the Windsor-Essex Children’s Aid Society — all housed in other cities because there is no place for them here.
Lee has resolved not to make Mark No. 41.
Terry Johnson, interim executive director of the Windsor-Essex CAS, says the lack of supports for families raising adolescents with complex needs is a public emergency.
“This is a very pressing issue …. We need to alarm the community about what is going on.”
Lee admits she has considered turning over her grandson to the CAS in the hope workers there could find some treatment that would help him improve. But when it was explained to her what was involved, Lee quickly reconsidered.
To surrender a child to CAS, the parent must go before an Ontario court judge and “abandon” him. Abandon. Lee chokes on the word. “I wouldn’t be able to live with myself. The guilt would kill me.” Families at wit’s end should not be forced to resort to that, Johnson says.
“When a community has the resources and supports, we don’t need children’s aid in these cases,” she said. “We should not be the safety net because a parent feels so desperate.”
But desperate parents dealing with violent adolescents have done just that. Others, like Lee, are hanging from “a thin thread,” Johnson says.
The children with complex needs in CAS care end up in London, Niagara Falls or even farther away, in foster homes with intensive outside support, or group homes of four to six kids and staffing 24 hours a day. The care can cost $360 to $1,000 a day, not including money for necessities like clothing and dental care. “These cases are the most challenging,” Johnson said. “We can’t keep them in their homes and we can’t even keep them in the community.” Community Living Essex County could create a space for teens like Mark, but it would take months or perhaps a year or longer to set up, says executive director Karen Bolger. The agency, which deals mainly with special-needs adults, would need to develop a plan and submit it to the province for funding, then find a suitable house to buy or lease and hire staff. “We are always willing to help. But it’s a process and we don’t have a place just waiting.”
It would be assisted living, not treatment, Bolger said. Lee says she doesn’t see the point.
“Why would I send him somewhere where they can’t do any more for him than I can?
“I don’t want to send him away if he can’t get any help.” Because Mark doesn’t make emotional attachments, not seeing his grandmother daily would break what little connection he feels for her.
Mark has been away for short stints — weekend camps put on by Family Respite Services and twice for assessments in London. He spent 12 weeks, then another four at the Child and Parent Resource Institute in London. The team of experts there got Mark’s medications sorted out and came up with a treatment plan. Before he arrived there, he had developed an involuntary motion that involved repetitively opening his mouth wide and extending his lips. A doctor at CPRI diagnosed it as Tardive dyskinesia, a side-effect of one of the medications Mark was on. The condition could have become permanent if the medication hadn’t been discontinued sooner, Lee said.
In London, Mark was exposed to therapy that hadn’t been available in Windsor. He came home with a treatment plan that led to the Regional Children’s Centre setting up a special “movement room” where Mark could burn off energy with a medicine ball and climb on play equipment while attending school there.
When he transferred to a special classroom at his public school, it was outfitted with a rocking chair that had been recommended by CPRI and a tablet he uses to learn math and language skills through computer games. But some of the recommendations could not be implemented because of a lack of services here, Lee explains.
The experts in London said Mark would benefit from sensory integration therapy — a kind of controlled stimulation often used to treat children with autism. But the therapy only became available recently, Lee says. It costs $140 a session and isn’t funded by the government.
“I’m scraping together the money,” Lee said. “I’ll find it somehow. I have to.” She goes on to explain that she gets her hair cut only twice a year and has never had a manicure.
The ironic part is that Mark gets $36,200 a year in provincial funding for specialized care, she says. It’s more money than she can spend because it can only be used for respite care — for Lee to get a break from Mark in the evenings or weekends — or for her to hire a housekeeper from time to time when she’s been up with him through the night and is too tired to attend to normal household chores.
“I get so much money for him it’s impossible to use it all,” Lee said. Connie Martin, executive director at Maryvale Adolescent and Family Services in Windsor’s west end, said funding complaints are a common refrain among parents of special needs children. Respite money can’t be used for help during regular school hours, even if a child has been suspended or expelled as is often the case, she explained.
Loosening the rules for respite funding would help families immensely, Martin says.
Mark attends Maryvale weekly for an after-school respite program. His psychiatrist’s office is also on Maryvale’s property. He has been admitted in the past to Rotary House — the nine-bed psychiatric facility run by Windsor Regional Hospital on Maryvale’s grounds.
Maryvale still has on its property six bungalows with a total of 32 beds once used by the children’s aid society to house Crown wards. Lee would like to see those beds reopened for a residential program for teens such as Mark. Martin disagrees, saying children need to go home to their own beds each night.
“It’s huge. Psychologically any kid suffers if they think they have to be separated from their family.”
Martin has another recommendation, one Lee thinks might work in her situation. It would be a program that runs from morning to night, seven days a week. Children for whom routine is immensely important would go to the same place every day, returning to their homes at night.
They would get their schooling, counselling, therapy and meals all under the same roof. The program could bring together all the professionals needed to deal with children with mental health issues combined with developmental delays — the “huge gap” missing from available services now, Martin says.
Premier Kathleen Wynne last month announced the province will increase funding for mental health and addictions by $2.1 billion over the next four years. Among the more tangible plans for the money, the province will create 400 positions for mental health workers in high school and beef up community-based services such as counselling, therapy and walk-in clinics.
But it’s a campaign promise with no guarantees.
Still, said Martin, it shows the province is acknowledging a problem.
Maryvale, which was founded by nuns in 1929 as a vocational school for wayward girls, hasn’t had an increase to its base funding in 15 years, Martin said. The province created five new counselling positions, covering the cost of the salaries and benefits, but there’s been no increase to the $6 million a year Maryvale gets to cover the salaries of other employees, or supplies, utilities or building maintenance. There’s simply no money to develop the kind of programs adolescents such as Mark need. Said Martin: “We have a tiny, tiny range of services that are about an inch deep.”
Lee complains that, apart from hospitals, mental health care ends at 5 p.m. and is non-existent on weekends.
Police are the only ones there 24/7.
Lee says she feels she has no choice but to call 911 when Mark flies into a rage. Through words, and once with handcuffs, officers subdue him. They call an ambulance and take him to hospital where usually, by the time he sees a crisis worker or psychiatrist there, he has calmed down. But once, it took 10 people to hold him down. Strapped to a gurney, Mark still managed to lash out by spitting on a nurse. After attending the premier’s town hall meeting in Windsor in February and speaking out about the lack of children’s mental health services, Lee got a phone call from a member of COAST, Windsor police’s Community Outreach and Support Team that pairs officers with hospital social workers. Lee learned the team only deals with people over the age of 16 and doesn’t respond to emergencies.
COAST made 1,430 house calls in 2013. That number jumped to 2,489 in 2017. Even though the increase is substantial, it still doesn’t accurately reflect the number of mental health calls Windsor police respond to daily, said Const. Andrew Drouillard. Some calls might be categorized as family violence or threats, when really, a mental health issue is at its root.
Officers receive crisis intervention training where they learn how to de-escalate violent situations, but as an officer told Lee recently, they aren’t there to help people raise their kids. “We’re here to help in times of crisis,” Drouillard said. But he added, “From a police perspective we’re a last resort.”
Wehavea tiny, tiny range of services that are about an inch deep.