Jill has a long list of things that keep her up at night.
She worries that her teenage son won鈥檛 get his high school diploma or be able to hold down a job. She fears that his disability will lead to taunts, or that he鈥檒l get hurt by strangers who won鈥檛 understand that his mental health conditions cause his sometimes erratic behaviour. She imagines the terrible things that will happen if he鈥檚 pulled into addiction or pushed into homelessness, or both.
鈥淚 worry about everything,鈥 she says. 鈥淗e鈥檚 so vulnerable.鈥
In recent weeks, Jill鈥檚 sleep has become haunted by a new fear: She and her husband may soon have to relinquish care of their son to a child welfare agency because they can no longer safely care for him on their own.
Adopted as a toddler, their son, John, has fetal alcohol spectrum disorder, or FASD, along with other neurodevelopmental disorders, including ADHD. He also has a learning disability and has been diagnosed with attachment and anxiety disorders. To protect their privacy, the Star has agreed to use different names for the family, who live in rural southwestern Ontario.
For years, Jill says they鈥檝e struggled to get John the help he needs. Now, at 16, John has reached a crisis point and his turbulent moods and at times violent behaviour make their home unsafe. Amid a persistent lack of community support and with no long-term plan for his treatment, Jill says she and her husband must confront the unbearable.
鈥淥ur hearts are breaking,鈥 Jill says, with a catch in her voice. 鈥淭he hardest thing a parent could ever have to do is turn your kid away.鈥
In Ontario, it鈥檚 a situation hundreds of families are forced to face.
Across the province, parents in crisis are turning to child welfare agencies because they can no longer safely care for their kids and teens with complex needs. These children typically have two or more mental health, developmental or behavioural conditions, such as autism and depression or substance use and self-harm.
The Star has spoken to a dozen families with children with complex needs. They say a broken system marked by years-long wait lists, a lack of respite options and scarce residential treatment spaces have left them struggling to get timely access to medical help and support, putting their already vulnerable children at further risk.
鈥淭hese families are desperately seeking help, they’re committed and fighting for their children,鈥 and they have exhausted every possible avenue, says Tracy Moisan, program director at the Toronto-based National Consortium on AFCCA (Aggression toward Family and Caregivers in Childhood and Adolescence), an agency that supports many families with kids who have complex needs.
鈥淚’m not even sure I have a word for it, because to say it’s heartbreaking is not enough. We’re failing as a society.鈥
Last-resort placements are painting a picture of a situation where Ontario鈥檚 most vulnerable children are the least likely to get help.
Last-resort placements are painting a picture of a situation where Ontario鈥檚 most vulnerable children are the least likely to get help.
Figures collected by the Ontario Association of Children鈥檚 Aid Societies (OACAS) and first reported by the Star underscore the emergency. In the past year, child welfare agencies provided service to 589 children or youth where protection concerns such as abuse or neglect were either not present or were a secondary concern to unmet health needs. According to OACAS executive director Solomon Owoo, these children would likely not have an open child protection file if community organizations had met their primary concerns, such as getting timely mental health treatment or supports for developmental issues.
Jill and her husband, Dean, say they are devastated their family has reached a breaking point. She says their early years with John were happy ones. They focused on making him feel loved and safe.
John was six when they first sought help from a doctor. In time, he was diagnosed with FASD; Jill says his condition is akin to having a brain injury.
Much of John鈥檚 childhood was spent navigating years-long wait lists, first for further diagnoses, and then for specialized supports, some of which didn鈥檛 exist in their part of the province. Jill says the lack of community options, combined with a school system unprepared or unwilling to meet John鈥檚 needs, put him at further harm.
鈥淧eople have sure tried to help, but it was not what we needed.鈥
Part of the problem, Jill says, is that FASD remains misunderstood 鈥 she calls it an 鈥渋nvisible disability鈥澨 and that not enough service providers know how to help, especially in rural Ontario.
FASD is a spectrum of conditions, and the diagnostic term describes the impacts on the brain and body of people who were exposed to alcohol during their mother鈥檚 pregnancy. It’s a lifelong disability, and those with FASD may have problems with memory and attention, social skills, motor skills and emotional regulation, among others.
鈥淧eople have sure tried to help, but it was not what we needed,鈥 Jill says.
Geoff Robins for the海角社区官网StarThough the number of people with FASD is unknown, recent Canadian research estimates between 0.1 per cent and three per cent of children and youth have been diagnosed with the disorder. The Canada FASD Research Network says early interventions and supports are critical to helping those with the condition reach their full potential.听
As a child, John was prone to mood swings and sudden outbursts. As he got older听鈥 and stronger听鈥 his outbursts turned more violent. Often,听John could not spend a full day at school. At home, Jill sometimes goes into the bathroom to stay safe from her son.
Despite these traumatic moments, Jill wants people to know how much she and Dean love John and 鈥渁ll his beautiful strengths鈥澨 his big heart, his love of animals and nature,听his joy in fishing.
They believe that early support and more consistent, cohesive care through his childhood and teen years could have minimized some of his more challenging behaviours and helped stabilize their family life. Few parents, Jill says, understand what it鈥檚 like to care for children with complex needs.
鈥淵ou鈥檙e not just a parent, you’re the teacher, the social worker, the counsellor, the researcher,鈥 she says. 鈥淧arenting is hard for anybody, for any situation. But when you add all of these layers on top 鈥 it really takes up every space in your life.鈥
John is currently in a residential treatment facility.听But Jill says she and Dean won鈥檛 be able to cope when he鈥檚 discharged early next year, or if he鈥檚 forced out sooner because of aggressive behaviour. She says they鈥檝e been told there are no other residential options in sight.
Jill admits it鈥檚 hard to say out loud, but says living full time with John puts her at risk of a 鈥渄omestic violence situation.鈥 For everyone鈥檚 safety听鈥 and John鈥檚 own well-being听鈥 Jill says they cannot live together.
It took 12 months to come up with a plan to address the crisis facing Ontario’s most vulnerable children. Two-and-a-half years later, the province
It took 12 months to come up with a plan to address the crisis facing Ontario’s most vulnerable children. Two-and-a-half years later, the province
But she also knows their local child welfare agency has few options. It鈥檚 among the children鈥檚 aid societies in southwestern Ontario that rely on unlicensed residences, including hotels and rental apartments, to house children with complex needs because no other options exist in the community. The Ombudsman鈥檚 office is investigating this practice.
John, who Jill describes as having the mindset and abilities of a 13-year-old, won鈥檛 be able to live on his own in a hotel or apartment, even with supervision by staff or child protection workers, she says.
鈥淗e doesn鈥檛 have the life skills to be independent,鈥 she says.
Jill describes the distress she feels about John鈥檚 future as a physical pain听鈥 one that no parent should ever have to face. She also says that despite the daily challenges and years-long struggles, her family wants to believe that John will one day get the right kind of help.
鈥淚 love this kid so much. I have to have hope.鈥
The 海角社区官网Star is investigating how and why children with complex special needs are not getting the treatment, care and support they need. If you have a story or tip to share, email adempsey@thestar.ca and mogilvie@thestar.ca
Correction - Sept. 30, 2024
This article was edited to note that FASD is Fetal Alcohol Spectrum Disorder. The previous version referred to Fetal Alcohol Syndrome Disorder.听
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