The 2014 death of a severely disabled Alberta teenager from a group home has prompted the Child and Youth Advocate to again call for improvements to the province’s child-intervention system.
The watchdog for Alberta’s vulnerable youth, Del Graff, said the death highlights the need for a smoother transition between child welfare and adult disability systems.
“Here we had a disabled youth whose quality of life was suffering because they implemented a transition plan that wasn’t working for him,” Graff said in an interview. “And then, when his caregiver was raising that, the response wasn’t what we would consider sufficient.”
In his investigative review, Graff told the heartbreaking story of a young man he called Ernie, who had been prenatally exposed to street drugs and prescription medications.
He suffered a brain injury when he was about one month old and was admitted to hospital.
That’s where he met his future foster mother, who noticed he wasn’t getting many visitors.
The Indigenous boy went on to live with his foster mother, who became his dedicated advocate.
Diagnosed with cerebral palsy, a heart condition, visual impairments and a loss of kidney function, he surpassed all developmental expectations while in her care.
The woman, whom Graff called Maggie, taught the boy to walk and showed him how to use simple verbal cues to better communicate.
Referred to PDD program as teen
In his teen years, Ernie began to display aggressive behaviour towards his mother, which led his care team to suggest ongoing intensive care.
At 16, he was referred to the Persons with Developmental Disabilities Program to start planning for a specialized group-care placement.
Just before Ernie turned 18, a placement was found. But it didn’t go as well as hoped, Graff said.
The report did not say where in Alberta Ernie was placed.
Feeling stressed, at times Ernie refused to eat and lost weight. He sometimes banged his head and hit himself, leaving significant bruises.
There were concerns about the quality of his care and missed medications.
His foster mother spelled out her concerns to the group home. But at one point she was told it might be better if she visited less often, to help Ernie settle.
Three hospital visits before he died
Shortly after his 19th birthday, Ernie was taken to hospital three times. During his last visit he was moved into intensive care.
He had surgery that revealed serious problems with his small and large bowels.
Ernie died the next day with his foster mother by his side.
In his report, Graff said supports can “significantly diminish” when young people move into the adult disability system.
Sometimes there are too many people involved in a single case.
“Maggie was overwhelmed by the number of people and was confused about who made what decisions,” Graff wrote.
The advocate made two recommendations in his report he said would help provide smoother transitions through the child-intervention system into the adult disability one.
Another recommendation said the voices of young people in care should be given more importance.
Graff pointed out that though Ernie couldn’t verbalize his concerns, his refusal to eat and banging his head were signs he was distressed.
“Disabled young people, they have views and they have a voice, and just because they can’t verbalize what their needs are doesn’t mean that they don’t have views,” Graff told CBC News. “And Maggie was the key person to help interpret what was working or not for Ernie, and at a couple of different points her views weren’t being considered.”
He pointed out that the Ministry of Human Services took steps to examine the Persons with Developmental Disabilities program in 2013, and released a final report last year.