“There is nothing out there. That's basically what the problem is,” said Joseph Spagnuolo, whose son Nicholas is in Ottawa Hospital’s Civic Campus, an acute care facility.
“I just feel Nicholas is a prisoner,” said his mother Anne Spagnuolo. “He's confined to that room and there's no way out. The minute he steps out of that room - the guards have their hands up like he's a monster and it's degrading. It’s despicable.”
31-year-old Nicholas Spagnuolo was born with cerebral palsy and has autism and dementia. He has the mental and emotional capacity of a small child.
“He's crying a lot. He's crying more than he ever has before,” said Anne. “It's like leaving a two-year-old behind that wants to come home with you.”
Cries to go home
“He's always asking when he's going to go home,” said Joseph. “He points to the window…and that's all he thinks about.”
Nicholas had lived at home with his parents all of his life.
“He loved cooking in the kitchen with me. Baking cookies, going for walks to the park, swimming in the pool in the back yard — shopping. Now, he does nothing,” said Anne.
In November, burned out and overwhelmed, they brought their son to the hospital, no longer able to cope with increasing seizures and violent outbursts.
“He would be like Mike Tyson and boom [he’d lash out with his fist] for no rhyme or reason. Then he would start crying. Or he would take something sitting on the counter and just throw it,” said Anne, his primary caregiver, who had taken to wearing a helmet around the house.
“He's not a monster. He just couldn't control these things.”
No other option
His parents said they’ve exhausted every other possible option for getting help for their son, to no avail.
“He's been on a waiting list [for long-term care] for this past year, while we’ve been realizing this system is saturated and there's nowhere else for Nicholas to be. This is just crazy. We didn't expect this to happen,” said Anne.
The Spagnuolos feel Nicholas has been neglected by staff in the hospital. They said he is left alone and inactive for hours, restricted to his room and hallway.
“It seems very inhumane,” said Joseph. “You know that allows [staff] to not have to worry about him, and not provide any more care than the basic requirements that they have in an acute care facility. If there are any problems with him the security are there to contain him.”
The parents said they often arrive early afternoon to find Nicholas sitting in soiled or wet clothes, with his meals untouched.
“He's basically someone who constantly needs care and supervision,” said Anne.
High cost, no benefit
The parents are also outraged at what they consider to be an exorbitant cost to taxpayers for such minimal care.
“It's very frustrating. We've spoken to [hospital] managerial staff, who agree with us, and the response is they hit a wall when it comes to the [government] bureaucracy.”
Three days of having Nicholas in hospital costs taxpayers approximately $4,000, including the guards' pay.
“That, compared to having a personal care worker and having him out in the community, in a proper facility. Surely, that must be more cost effective than what's going on now,” said Joseph.
The parents said $4,000 is what the province previously allocated to the family for a whole year to hire part-time caregivers.
“There are many more [patients like Nicholas] and they all can't be left sitting in a hospital confined to a little room like that. That's not the place for these people.”
The Ottawa Hospital told Go Public its facilities alone have 12 similar patients, housed in acute care rooms, when they shouldn’t be.
Long waits for many
“These patients can remain in hospital for months even though they no longer require acute care. What they really need is a secure care environment that is appropriately resourced to meet their behavioural, daily-living and medical needs,” said a hospital statement.
“It’s clear that Ontario families need more community-based options to meet the needs of their loved ones with developmental and behavioural challenges.”
Autism support groups call this a national crisis that is hurting patients, putting families under huge stress and costing too much.
“There have been many situations like this in Ontario and in other provinces as well and it is unacceptable,” said Margaret Spoelstra of Autism Ontario.
“We can and must do better as a country and as provinces in responding to the needs of people with complex needs. The costs related to housing someone in a hospital acute-care setting are astronomical.”
Ontario’s ombudsman has been investigating this problem for a year and a half. Its office has heard complaints from 1,067 affected families, like the Spagnuolos, who can’t cope.
“Many report that there is too much bureaucracy and not enough service. They feel like they are facing endless waitlists. There is an endless cycle of planning, assessment, communities, tables, resource visits, but services aren't being connected to those people who are really in need,” said Deputy Ombudsman Barbara Finlay.
“Parents are locking themselves up in basements. Wearing helmets because they are afraid of violence. They feel like they have nowhere to turn. We hear horror stories of people being warehoused in hospitals, long-term care facilities, nursing homes, facing even potential homelessness or jail.”
Ontario’s ministry of community and social services said the minister was not available to talk about this but said it is “acutely aware” of the problem.
“We are creating an inter-ministerial housing task force that we have asked to recommend innovative housing solutions and develop online resources to help families find housing solutions. We are also investing in projects to promote community inclusion and innovative alternatives to traditional models of support,” said the ministry.
Meanwhile, the Spagnuolos hope going public will push the government to find their son an appropriate place to live, or at least give him a full-time caregiver, while he waits.
They said it breaks their hearts every day to leave him alone in that hospital room.
“I have to basically tell him it's only going to be a few more days and soon he'll be going home. I just have to carry on that lie,” said Joseph.
As much as they would like to, the couple said they actually can’t take their son home because caring for him is now beyond their capabilities.
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