Teen’s death should prompt ‘meaningful change’ in services for disabled Albertans: report

A review into the death of a disabled Alberta teenager in government care is calling for “meaningful change to improve services for young Albertans with disabilities as they transition from one system to another.”

On Tuesday, the Office of the Child and Youth Advocate released its findings following the death of an 19-year-old indigenous man referred to by the pseudonym “Ernie.”

According to the the report’s author, Child and Youth Advocate Del Graff, Ernie was “severely” disabled and died from an obstructed bowel 18 months after being moved from his foster home to a group home for adults with disabilities.

Ernie’s background

Graff describes Ernie as having a “mischievous sense of humour” and being someone who loved listening to music as well as singing and drumming. He was known to listen to radio and dance with his foster mother Maggie as well as his caregivers. He also had a passion for water and the outdoors and had a “special doll that he would always hug and kiss goodnight.”

Ernie was the youngest of 10 children in his family. He was “prenatally exposed to street drugs” and suffered a brain injury when he was an infant, resulting in him becoming “severely disabled.” He was diagnosed with quadriparetic cerebral palsy and also had a heart condition, visual impairments and a progressive loss of kidney function.

He was first put into government care when he was about two months old and lived with his foster mother Maggie until he was 17. Maggie, a single mother, also cared for her adult daughter who suffered from a brain injury as well as her elderly mother. According to Graff, Maggie tried to keep Ernie connected to his family through visits with his older brother.

Ernie’s father died by suicide when he was six years old and his mother died of an “addictions-related illness” when he was 13. However, the report found Ernie thrived while in the care of Maggie as she taught him to walk with the help of a walker and also how to use verbal cues to signal when he needed something.

Graff describes Maggie as a “strong and caring foster mother” but just before Ernie turned 18, he was transitioned from Child Intervention Services to the Persons with Developmental Disabilities program.

Ernie’s transition from his foster home to a group home

Graff said Maggie maintained their relationship even after he left her home and arranged for visits with him.

While transitioning to the adult group home, Graff said their were immediate concerns about managing his medication and diet.

“Although Ernie had a G-tube, he primarily ate his food,” Graff said. “When he was stressed or ill, Ernie refused to eat and the G-tube was used. During the transition, Ernie’s self-injurious behaviours increased, leaving significant bruises. There were quality of care concerns reported that included three incidents of missed medication and lack of staff training in his medical care.”

Graff also noted Maggie “voiced her concerns to the group home staff and the caseworker about his increased injuries and the care he received.”

At the time, it was recommended that Ernie’s caseworker follow up with the facility to make sure the concerns were addressed.

Ernie continued to struggle on a number of fronts and his doctor suggested Maggie would be best to care for him if she was given “additional support,” however, he remained in the group home. The report found Ernie continued to hurt himself and was losing more weight while his caseworkers suggested Maggie not be involved in his care anymore as he was too attached to her and they believed he might “settle better” if she visited less.

After his 19th birthday, Ernie was taken to hospital on three different occasions because he was not feeling well and on the third visit, he was admitted to an intensive care unit because “his breathing became rapid.” According to the reports, an exploratory surgical procedure showed he was suffering from necrosis of the small and large bowel. Ernie was then given palliative care and died the next day with Maggie by his side.

Recommendations based on a review of Ernie’s death

According to Graff, Ernie’s case highlights two systemic government care issues that could be improved upon: easing transitions from child intervention to adult disability services and ensuring that the voices of young people are heard, especially in cases like Ernie’s in which people have difficulty or are unable to voice their thoughts and opinions.

Graff noted Ernie went from having a sole caseworker tasked with making decisions for him while he was in the child intervention system to having multiple workers responsible for him when he transitioned to the adult disability service system. Graff cited “structural differences” exist between the two systems that “can pose challenges and create confusion during the transition process.”

The report called on the government to address this issue by developing “processes to ensure that consistent services and supports are in place when young people transition from Child Intervention Services to the adult disability system.”

The report cited a tenet from the United Nations Convention on the Rights of the Child calling for young people’s opinions to be taken into account when decisions affecting them are made.

“For disabled youth who are unable to voice their thoughts and opinions, it is imperative to include those closest to them who know them well and put their best interests forward,” the report said. “In Ernie’s circumstance, this was his foster mother, Maggie. She was critical to ensuring that Ernie’s thoughts and feelings were known and considered.”

To address this issue, Graff called for the Ministry of Human Services to include the voice of the young people in their own case planning. He said in cases where the person in case can’t speak for themselves, “caseworkers need to access all avenues to ensure that the young person’s rights, interests and viewpoints are considered.”

“The loss of any young person, in any circumstance, touches their loved ones and community, and my thoughts are with those who cared for this youth,” Minister of Children’s Services Danielle Larivee said in a statement following the release of the report.

“When any young person transitions into adulthood, the adults who have served as mentors and supports are crucial to ensuring success. That’s why we have piloted practices that support these lifelong connections, consistent with the Advocate’s recommendations.”

Larivee noted “Child Intervention and Disability Services protocol is being developed following previous recommendations” but said the report underscored the need to “take a closer look at how we are listening to the members of the disability community we care for.

“We recognize that there is more work to be done to close these gaps.”

Among his two primary recommendations, Graff also noted Ernie would have benefited “by being more connected to his cultural heritage and traditions.”

The Office of the Child and Youth Advocate is an independent office of the Alberta legislature.

Graff said his review is not meant “to find fault with specific individuals, but to identify and advocate for system improvements that will help enhance the overall safety and well-being of children and young people who are receiving designated services.”