Autistic man has spent year on psych ward
Endures lockdown conditions while waiting for a group home
Stefan Bozickovic sits hunched in a chair as he gazes intently at a movie on his iPad.
“He’s watching Maid in Manhattan again,” says his mother, Nada Bundalo. “He loves Jennifer Lopez. He loves romance.” But there is nothing romantic about Stefan’s life. Stefan, 22, who has autism and a seizure disorder, has been locked up on the psychiatric ward at St. Michael’s Hospital for almost a year while he awaits provincial funding for a group home placement in the community.
Except for a 10-metre walk to the shower room once a week, Stefan has not been allowed outside his barren hospital room.
The controls are a precaution to protect nurses and others from his increasingly frequent violent outbursts, his parents say.
From noon until 8 p.m. every day, a security guard and mental-health worker are stationed outside his room. The mental-health worker gives Stefan his meals and ensures he uses the washroom. The security guard is there in case Stefan becomes anxious and aggressive.
“This is so sad,” says Bundalo, choking back tears. “It is inhumane to keep a person with a disability locked up like this when they are not sick.”
In a damning report last August, provincial Ombudsman Paul Dubé highlighted more than 250 cases like Stefan’s, where adults with developmental disabilities are needlessly placed in hospitals and psychiatric units “at significant cost to the health system.”
Dubé urged the province to “take the lead in fixing systemic problems province-wide” and to intervene in crisis cases so that these vulnerable adults are not returned to abusive situations nor housed in hospitals, nursing homes or other inappropriate places.
His report, titled “Nowhere to Turn,” was based on 1,400 complaints from desperate families, like the Bozickovics, struggling to care for adults with developmental disabilities such as autism.
At the time, Community and Social Services Minister Helena Jaczek apologized to families and vowed to provide more leadership and better inter-ministry co-ordination. But the crisis continues. Since his August report, Dubé’s office has received an additional 72 complaints, including a plea for help from Stefan’s family.
After months of futile calls to the ministry’s adult development services office, Bundalo contacted the Star.
On Monday, barely four hours after the Star emailed Jaczek’s office, Bundalo says she was told funding has been approved and two Toronto agencies have offered Stefan a space, subject to an assessment of his needs.
In a statement Tuesday, a spokesperson for Jaczek acknowledged the urgency of the case and the broader need for more community options.
“We are committed to working with the family to assist in finding an appropriate residential setting and are confident that one will be found,” said Lyndsay Miller.
“While we have made progress in expanding supports for adults with developmental disabilities, we recognize that we have much more to do,” she added. “There are still too many people waiting for services, but we remain committed to providing funding to individuals, as well as continuing to find unique, creative ways of providing services and supports for adults with developmental disabilities and their families.”
There are 33 psychiatric beds on the 17th floor at St. Michael’s Hospital and all are in “high demand,” said spokesperson Leslie Shepherd.
The hospital does not typically comment on individual patients, she added.
Since Stefan is receiving no real treatment, hospital administrators have been urging the family to take him home, his mother says.
But Bundalo, 60, has already suffered a heart attack and mild stroke from the strain of caring for her disabled son. His 68-year-old father Nikola Bozickovic is undergoing cancer treatment for a second time.
“We had Stefan when we were older and it is not safe for him to be at home anymore,” Bundalo says.
“He has broken all of our furniture. He was hanging from the light fixture and threatening to jump off the balcony,” she says. “We had to call the police to help us take him to the hospital. But had we known he would be here a year like this, deteriorating, I don’t know if we would do it again.”
For the past year, Stefan’s parents have visited their son daily. Bundalo gets up early to cook for him and her husband arrives at the hospital at 10 a.m. to feed and keep him compa- ny for the morning. Bundalo visits in the afternoon and her husband returns at 9:30 p.m. to help Stefan fall asleep. His sister Isidora, 33, who works nearby, often visits on her lunch hour.
“We don’t want him to feel we have abandoned him here,” Bundalo says.
Shocked by Stefan’s increasingly agitated state, and frustrated that the hospital has barred the family from taking him outside for fresh air, they have been desperately searching for alternatives.
In October, they found a private group home in a rural setting about an hour north of the city willing to take Stefan on a respite basis while he awaits a government-funded space.
The cost of the security guard and mental health worker at the hospital would have paid for Stefan’s care in the private group home, Bundalo says. But since the ministry does not have a purchase-of-service-agreement with the home, the family was told the province would not approve the move.
This is despite the fact all eight young men at the home are receiving ministry funding through agencies that serve adults with developmental disabilities, she notes.
“We are thankful that we have the hospital to keep (Stefan) safe when in crisis. We are grateful that the ministry is providing support workers to relieve (us) and to help change him, feed him. We are thankful to everyone who looks after him,” Bundalo writes in a letter to the ministry and provincial ombudsman.
“But my concern is that even with all the resources . . . he does not benefit. For a fraction of the cost of keeping Stefan in hospital, he could be transferred to a community setting with staff trained to work with people with autism,” she writes. “Keeping him (in hospital) violates Stefan’s basic human rights because he is there not for treatment but because of his disability.”
Her son’s condition, aggravated by undiagnosed stomach pain, has gone downhill since his confinement in hospital where he has been physically restrained and “unnecessarily medicated” due to his disability, Bundalo says.
“He went from being a very affectionate child to pulling back and getting scared even if you gently touch him,” she says.
“Our son is not beyond help,” Bundalo says. “He can be a sweet, affectionate young man, who enjoys his computer and spending time with his family.”
For two weeks last summer, Stefan attended a specialized camp where his mother says he was “a different person, even from the one we saw at home when he was in distress.”
“This tells us that he can thrive, given the right environment and support,” she says. “He has waited long enough for this help and it shouldn’t take a call to the Toronto Star to get it.”