Atlantic Voice: Woman seeks community care for foster brother

Pat Sobey will never forget the first time Jacob Knockwood was taken away from her.

Sobey was 9 years old, living with her grandmother. Knockwood was 13, one of several foster children who had been living with them.

"None of us knew at the time what was taking place," recalled Sobey of the time social services took the foster children away.

"The day the last car came, I remember standing in the upstairs bedroom looking out, and I saw that car leaving and it was like, for a child it was like, 'they're gone.' It's just devastating. I didn't think I would ever, ever see them again."

Both Sobey and Knockwood were separated from their mothers early in life — Sobey because her parents separated, leaving her in the care of her grandmother.

In Knockwood's case, he was born with congenital deformities — a cleft lip, and a cleft palate. According to Sobey, Knockwood was taken from his mother in Scotchfort First Nation, and put into foster care.

When his last foster placement came to an end in the early 1970s, when Knockwood was about 20, he was sent to Hillsborough Hospital, P.E.I.'s psychiatric facility. That's where Knockwood has spent most of his adult life. But Sobey maintains he never should have gone there, and he shouldn't be there now.

Not allowed to attend school

Apart from a severe speech impediment, which Knockwood retains today, Sobey says he seemed no different from the other kids. But he wasn't sent to school with them.

She says in her opinion "that was the first mistake that was made against Jake. He should have been allowed to learn. Because there was never anything mentally wrong with Jake. He had the capability of learning.

"So when we'd go to school he'd sit at the end of the driveway, rocking back and forth and singing. And he was there when we came back from school. And we knew it wasn't right, but there was nothing we could do."

Sobey believes missing out on the opportunity to learn is at the root of Knockwood's problems. Spending most of his adult life in a psychiatric institution only made them worse.

"A young man lived his young life in Hillsborough Hospital," said Sobey, who's spent the past two and a half years trying to have Knockwood placed in community care. "There's nothing more cruel than that.

"He's now institutionalized in his brain. He doesn't know he's allowed to get a drink of water. He's never made a piece of toast for himself. He's never made a sandwich. He's never had any rights."

1/2 of hospital residents shouldn't be there: report

A report by Corpus Sanchez International, delivered to the P.E.I. government in June of 2014, concluded roughly half of the facility's 69 beds are taken up by patients using the hospital as a "safety net." That is, they don't require the specialized psychiatric treatment Hillsborough is meant to provide.

They are considered "alternate level of care" clients, many of whom have spent time in a group home or other community care facility, but ended up back at Hillsborough because they "have not transitioned well and/or cannot continue to be supported safely and effectively in the community."

The report says this reduces the hospital's ability to provide timely service for those who require mental health treatment.

"This creates confusion and conflict," the authors wrote, "resulting in gaps in service that have the potential to reduce the ability of the overall system to meet the needs of the most vulnerable Islanders."

Twilah Stone is with an advocacy group called Partners for Change. She says there are many families and advocates looking for ways to move people out of Hillsborough Hospital.

"Yet there doesn't seem to be any place for them to go," she said. "There doesn't seem to be any commitment to plan for a better alternative.

"If there was a commitment to make this happen we could find ways to move dollars around. Government departments seem to be working in silos these days. Some of the folks we care the most about — they're in the wrong place. And I don't blame the people at Hillsborough Hospital for any of this, in fact, they're doing the best they can. They're just ... they've got the wrong people in there."

CBC News asked to speak to someone about Knockwood's situation and about general issues surrounding Hillsborough Hospital, but Health PEI denied both requests.

'Jake liked Charlottetown and Charlottetown liked Jake'

Jacob Knockwood spent about a decade living in two different community care facilities in downtown Charlottetown. That's where many residents became accustomed to seeing him in the summer seated on a bench in front of the CIBC bank at the intersection of Queen and Grafton streets.

"Everyone seemed to know him, everyone seemed to like him, he just seemed to have a lot of friends," said former Charlottetown MP Shawn Murphy, one of the people who got to know Knockwood in those days.

"He certainly was a kind, considerate individual. He had his physical challenges, he had difficulty communicating but he did his best. You know, Jake liked downtown Charlottetown and I would say the people of downtown Charlottetown liked Jake."

It was during this period that Sobey and Knockwood were reunited in a chance meeting after an four-decade absence.

"It was like seeing a ghost," recalls Sobey of the day she was driving down Queen Street and saw Knockwood seated on his bench.

"It was like, 'Stop the car, there's Jake!' So I jumped out of the car and he really didn't remember me because it had been 40 years. I had to find my pictures and I had to bring him back to when we used to play, and got in trouble. He remembers all those things now.

"I was really, really pleased to find him. And I stick up for him now and do what I can to help him, because everyone else in his life has left him."

Back to Hillsborough Hospital

Sobey says in May 2012, Knockwood was admitted to the Queen Elizabeth Hospital for influenza. He never went back to his community care facility, but was instead transferred to Hillsborough. According to Sobey, health care personnel conducted a test of his ability to swallow. They found he was at risk of choking, and determined he couldn't go back into community care.

Since then Sobey, who has been given authority to make medical decisions on Knockwood's behalf if he is unable to, has been fighting to get him out of hospital. She's developed an eight-page plan for his care, and lined up an aide who used to work at Knockwood's community care facility to be his primary caregiver.

But she says the hospital won't provide him with a discharge. She says as a voluntary admission he could technically leave anytime. But without a discharge he would receive no disability support funding.

"I am totally, totally frustrated," she said. "We have the entire plan, we haven't missed out on anything. I don't understand why they can't even let Jake try this to see if it'll work. It wouldn't hurt. He's not that medically sick that they can't give it a try."

'Too many bad memories'

But Knockwood, who turns 62 this year, is not the same as he was when he was first admitted to Hillsborough some four decades ago. He has diabetes, which Sobey says wasn't always being properly treated when he was in the community. Five years ago he had heart bypass surgery. He's had a blood clot in his lung.

Sobey says staff at Hillsborough have used all these conditions in making the case that he can't be released. She's also been told that nursing homes have rejected Knockwood as a client because of a number of instances where he became aggressive, including one incident where he smashed a glass table.

Sobey says another stroke against releasing Knockwood in the hospital's view is that he's beginning to have difficulty walking. But Sobey says that's only developed since he was readmitted, because he spends most of his time now sitting or lying down.

"They've set him up in a beautiful room," she says of the situation at Hillsborough. "They're trying. But he's got so many bad memories of that place.

"If I felt for one minute I was putting Jake at any risk medically, I would stop this. I would definitely tell Jake this is the time you have to accept staying here," she says. "At this point in his life, if Jake gets six months out of hospital, and has a home where he feels loved and cared for, that's six months out of his life. That's a good thing."

NOTE: All of the information on Jacob Knockwood's medical condition and history was provided by Pat Sobey. Hillsborough Hospital/Health PEI would not provide information on his specific case. Health PEI also would not provide a spokesperson to talk about general issues to do with Hillsborough Hospital. For medical reasons, Jacob Knockwood was not allowed to leave the hospital during the period this story was being prepared, and CBC News was not permitted to visit him in hospital.