Nursing home life a struggle for young developmentally disabled people

When Peter Farrah moved into a long term care centre, his parents thought it would be for a year or two at the most.

Twelve years later, Farrah, who has a severe form of epilepsy that’s led to developmental delays, is still there.

At age 33, he’s an odd man out in a facility that caters mostly to frail seniors. He said it’s taking a toll on his mental health.

“I sort of get stressed out about being here, and one time I got into an angry fit,” said Farrah, clearly battling exhaustion from a seizure that afternoon and a foot injury from a seizure-induced fall the previous day.

“I sort of wanted to scream and yell, like in a panic. And there have been times when I didn’t want to enter the place anymore.”

Peter’s parents, Rick and Sue Farrah, were exhausted trying to care for him so they turned to long-term care after a long and fruitless search for other supportive housing options in the community.

At 21, Peter was also yearning for some independence from his parents. Granite Ridge was a new long-term care facility that offered the promise of respite for everyone while they planned for the future, ideally finding a new home with younger roommates.

Instead, like many adults with developmental disabilities, Peter is waiting for a group home to materialize that can accommodate his medical needs as well as help him along in his journey to live more independently.

'Up against a brick wall'

The Ontario government has committed to a process of de-institutionalization for those adults, starting with the closure several years ago of facilities including the Rideau Regional Centre in Smiths Falls. However, many are still waiting for the government to provide the supports they need to live outside such institutions.

And with many families in a state of crisis because of the demands of caring for adult children at home, Peter’s family has grown hopeless that his plight will ever make it to the top of the government’s to-do list.

"We run up against a brick wall," said Rick Farrah. "The province of Ontario deems him placed. He's in a safe environment, and so why should we move him out of here?"

"But that's not what we see. We see a young man who is struggling, wanting to have the same things that people of his age have, and he doesn't have it."

Those struggles include not just difficulty making friends, but the heartbreak that can follow when he does.

“Mainly, there’s too many elderly people, and they pass away before me. And that really makes me cry,” said Farrah.

Number of young patients in long-term care increasing

Advocates for the developmentally disabled have long been concerned about housing young people in long-term care centres.

In 2007, health care consultant Patricia Spindel spoke out against a new government protocol to guide access to those centres, calling it a betrayal of the community. Spindel now believes that the protocol, coupled with a failure to provide community supports after closing institutions, has led to a tripling of the number of young people in long-term care. That’s based on figures she received recently in response to an inquiry made under freedom of information laws. 

Spindel's documents from the ministry of health show 5,338 people with developmental disabilities under age 65 living in long-term care across the province. In 2006, a presentation by ministry of health officials claimed there were fewer than one third that number, in all age groups combined.  

According to the figures, between 2008 and 2012 there were 87 people under the age of 35 living in long-term care in the Champlain LHIN — which includes Ottawa and the surrounding region. It's the highest number among regions in the province.

“It’s not just people with complex medical needs who are going into long-term care facilities,” Spindel said. 

Rules not designed for younger patients

A major problem with long-term-care homes, according to Rick and Sue Farrah, is that the rules and procedures in place to provide good care for the elderly can actually do the opposite for young people trying to become independent. Serving a choice of two plates at each meal does nothing to help a young person learn to cook and clean up, or to give them a sense of accomplishment.

“I don’t want to stay here forever and eventually die here.”- Peter Farrah

Ontario’s Minister of Community and Social Services declined CBC’s request for an interview, but issued a statement.

In the statement, the minister Ted McMeekin said the government has begun to create a task force to look at the problem of housing for people with developmental disabilities.

In the meantime, people living in long-term-care facilities can apply for supports to help them participate in the community.

Peter Farrah gets a few hours a week of help from a worker who can take him to the gym or to activities such as shopping, but according to his mother Sue, it’s not enough to make up for the bleak reality of living in long-term care.

“When he came at 21, we were devastated…but now as time goes on, you think, this is really not right, that he should have to stay here for his whole life when that’s not what he wants,” said Sue. “When he’s not growing, when he’s lonely and isolated from a socially appropriate group that he should be with.”

Peter’s fear is that one day he really will fit in at Granite Ridge — because he’ll be a senior citizen himself.

“I don’t want to stay here forever and eventually die here,” he said.

Number of people under the age of 35 living in long-term care in Ontario (2008 to 2012)