Better transitions and better communication between the child welfare system and the adult disability system would have made a difference for “Ernie”, a 19-year-old First Nations man, who died about 18-months after making the transfer between systems.
Ernie’s death followed a review undertaken by the province in 2013 to transform the Persons with Developmental Disabilities program. The changes were to bring about a more open relationship between family and disabilities program staff, allowing family to have more confidence in the quality of service their disabled family member was receiving.
This was not the case for Ernie and his foster mother “Maggie.”
On Feb. 7, the Office of the Child and Youth Advocate released its investigative report into Ernie’s death. Ernie died from an obstructed bowel.
“This review highlights the importance of seamless transitions in service delivery between child welfare and adult disability systems, continuity of relationships and incorporating the voice of a young person in decision-making,” wrote child and youth advocate Del Graff in his report.
Ernie became involved with the Child Intervention System at two months old. He was prenatally exposed to street drugs and prescription medication and then, when he was about one month old, he suffered a severe brain injury.
Ernie had significant disabilities. Maggie cared for him from four-months of age and kept regular contact with him when he transitioned into a group home for adult, just before his 18th birthday. Her advocacy for Ernie—which Graff refers to as the “voice of a young person” —brought limited results and, near the end of Ernie’s life, group home officials discouraged her involvement. Ernie had thrived in Maggie’s care and home, having surpassed developmental expectations.
“(Maggie) was critical in ensuring that Ernie’s thoughts and feelings were known and considered,” said Graff.
He pointed out that Ernie went from a long-time caregiver and a single caseworker to multiple workers responsible for different aspects of his care when he entered the group home. Ernie responded to the change in care by self-harm and refusing to eat.
Maggie had concerns about Ernie’s quality of care, including nutritional needs, and reported those concerns. Child Intervention Services said the group home had implemented strategies to deal with the concerns and ended its involvement four months after Ernie turned 18.
Maggie continued to be actively involved in Ernie’s life and there were ongoing disagreements between her and the group home over his care.
After his 19th birthday, Ernie was taken to hospital three times because he wasn’t feeling well. On his last admission, exploratory surgery revealed necrosis of both the small and large bowels. The day after the surgery, Ernie passed away. Maggie was with him.
“Maggie’s primary goal was Ernie’s well-being and she made his interests her own. In order to meet Ernie’s needs, service providers had to carefully consider what Maggie was saying,” said Graff.
In 2015, the Ministry of Human Services engaged in a process to examine the standards of safety for those receiving supports through disabilities services. The final report was released in October 2016 and included 11 recommendations, all of which are supported by Graff.
“Of particular relevance to Ernie’s circumstances are recommendations that improve certification and education of staff, increased supports for individual and family advocacy and meaningful communication between the disabilities program and the disability community,” said Graff.
While the terms of reference for this investigation did not identify Ernie’s Indigenous background as a potential systemic issue, Graff does say that “Ernie would have benefited by being more connected to his cultural heritage and traditions.”