Brendon Purdy-Smith’s aging parents wish the future for their son with developmental delays looked as bright as his signature tie-dyed t-shirts.
His 62-year-old father, Kimberly Smith, is an optimist. It’s not hard to tell.
He has a lot of big ideas about what the next steps could be.
His 72-year-old mother, Kathleen Purdy, fears they’re staring down a pretty bleak barrel unless something changes soon.
There’s a nagging question that has them reaching for solutions and pie-in-the-sky ideas where few exist: 'what happens to our son if something happens to us?'
“The main thing for us, really, is where he’s going to live his life when we’re gone. The fact that we know there’s such a huge waiting list of people like Brendon to get into a residential situation, and that the choices are so limited, is really concerning,” said Purdy, sporting a tie-dyed shirt with swirls of greens, blues and reds cascading in a whirlpool of colour.
“We want him to get used to the idea of being somewhere and that is his home, and he can come and visit us and we can visit him, and that kind of thing. That way he can be comfortable there so that when we die, it’s not a huge trauma.”
Purdy fears her son won’t find the comforts of home in the Kings Regional Rehabilitation Centre, a Waterville-based facility serving more than 200 clients from across the province.
“If something (happened) to us now, and he was left, they’d put him in the rehab centre,” said Purdy.
“It’s like he’s being put into jail,” she added. “That’s my biggest concern: what’s his life going to be like? I’d like to feel good about that.”
A VIVID MEMORY
Smith holds his two hands up, pressed together, making fists. His thumbs are facing outward.
On his left hand, the gap between his thumb and his palm is larger than his right, which offers a modest visual explanation of what’s happened to Brendon’s brain.
Doctors suspected Brendon had moderate to severe global developmental delay early in life.
They got their proof on Jan. 18, 1991, following a CAT scan.
“He had an enlarged left ventricular cavity,” recalled Smith, thinking back to the day 18-month-old Brendon was diagnosed. “It was a shock, obviously, that’s my boy. And it was my birthday when I found out.”
Smith had a full day planned. He was volunteering at The Centre for Art Tapes in Halifax and they had a visiting artist from Japan who was doing an installation based on the atomic bomb attacks at Nagasaki and Hiroshima.
Smith was charged with blowing up an inflatable mat that was part of the display. He poured all of his sadness and frustration into that task after getting the news, and brought his own personal bombshell into that moment.
“I’m basically hyperventilating into this thing and sobbing while I’m doing it,” he said. “It actually helped me process it.”
At the time, Smith and Purdy had no idea how much their son would be able to develop.
Now 30, Brendon is active at their home in Canning, drawing pictures and watching YouTube videos on his iPad, sometimes from the comforts of his peaceful hammock sanctuary under the deck in the backyard.
It’s one of his favourite spots to hang-out, especially when the sun is shining, and the weather is warm.
He’s mastered the art of communicating without words, using hand gestures to signal and sign people and objects in a language that is uniquely his own.
The grown man with a reddish-brown beard and the spirit of an excitable child has a trademark gleeful giggle that reveals his affinity for music, silly sounds and all things fun.
The tie-dyed shirts he makes and proudly wears show off the artistic traits he’s picked up from his parents, both artists themselves.
“We’re often putting labels on people or putting them in boxes, which is why I don’t like the term mentally challenged at all. I like the word mentally challenging. It just means that we need to work a little harder. We need to rise to the occasion,” says Smith.
“He’s a bright human being, there’s an alertness, a curiosity about him that most people would call intelligence, even though he can’t use his mouth the same way I can. He can understand and perceive what you’re saying, and you know that because you can see it in his eyes.”
Purdy and Smith are terrified that their son will end up in an institutional setting that doesn’t stimulate him, engage him or excite him when they can no longer care for him at home.
A place that doesn’t foster a love of music, colours and silly sounds is no place for Brendon.
Jean Vanier, a world-renowned Canadian advocate for people with intellectual disabilities, passed away May 7, at 90, following a battle with thyroid cancer.
Vanier founded L’Arche in 1964 as an alternative living option for people with cognitive disabilities after seeing the impacts of institutionalizing patients firsthand.
The L’Arche model sees people with and without intellectual challenges living and working together. There are currently 29 such homes across Canada and even more across the globe.
Smith and Purdy have been trying to get their son into one of these homes for more than six years, but the waitlist has only been growing.
Smith said they tend to deal with emergencies first, such as when a primary caregiver passes away.
But that’s already a traumatic moment, and adding a sudden move to that could be devastating.
Jenn Power, a regional leader for L’Arche in Atlantic Canada who was at a L’Arche gathering in Montreal, said she sympathized with the family’s situation.
“Unfortunately, Brendon’s parents are not unique in Nova Scotia,” Power said, adding that she gets on average one or two calls a week from families going through a similar situation.
Power acknowledges that families don’t see their children with advanced needs as burdens, but they do need support.
"A full life is not living with your mom and dad until they pass away and then moving in with a bunch of strangers. These are families who want their children to learn, to have friends, to have a social life, to be members of the wider community,” she said.
“Unfortunately in Nova Scotia, the ability to access that kind of support today is really limited. There aren’t enough spaces available and there’s a huge waitlist of folks who would like to have those spots.”
That waitlist is estimated around 1,500 people in Nova Scotia.
Power said there are two new projects L’Arche is currently working on in Atlantic Canada, one in Fredericton, N.B. and another in St. John’s, N.L.
There are no current expansion plans in Nova Scotia. But demand continues to outstrip supply.
Waitlists are centrally managed by the province, with the Department of Community Services filling vacancies on the agency’s behalf, like L’Arche Homefires in Wolfville.
“We hear from families that it is a crisis-driven placement system,” she said. “It’s unfortunate, but true, that folks that are happy and healthy who have parents that are able to support them often don’t get the same opportunities that other folks do.”
MORE THAN AN INSTITUTION
Kings Regional Rehabilitation Centre (KRRC) CEO Judy Heffern said she understands the concerns of people who are hesitant about sending family members to live at the rehab, but she added that they’ve made efforts to foster a sense of community while they transition to more in-community homes.
“We are the largest of eight similar facilities within the province and we serve over 200 clients, 176 that are in the main section, and we have 10 community-option homes,” Heffern said. “We also have vocational work programs as well.”
She said their mandate is to work on an individual basis and to get the person back to as much independence and functionality as possible.
KRRC also has hundreds of staff, from physiotherapists to speech therapists, nurses, teachers, and more to help work toward those goals.
“We’re actively treating people when that need is there,” she said. “Our ultimate goal for every individual is to have them reach their full potential.”
Heffern said they help to develop life skills, depending on the individual, such as using transit options, handling money or simply going out for food.
“I don’t like the word ‘institution,’ we’re in an older building, around 62 years old, so of course we look like an institution,” she said. “But we also have community-option homes, and although they have staff in them, people live there and go to work.”
Heffern says the accredited organization has taken steps to foster a sense of community amongst the clients, rather than having a sterile, hospital-like setting.
“It’s very communal; we try to build teams within the community,” she said, adding that councils made up of clients and families bring forward suggestions.
COMMUNITY SERVICES RESPONSE
Shannon Kerr, a media relations advisor for the Nova Scotia Department of Community Services, says the government is investing more into in-community homes and transitioning away from large-scale operations, which have been criticized.
“As part of the department's ongoing transformation, we continue to improve the Disability Support Program (DSP) to ensure we provide accessible and flexible supports and services for Nova Scotians with disabilities,” Kerr said. “We're also changing how we support DSP clients as we work toward closing large-scale facilities and focus on smaller, community-based homes, which will allow residents to live inclusively as part of the community.”
Kerr said the government recently put $1.5 million in front-end programs, such as the Independent Living Support program, the Alternative Family Support program, and the Flex Independent program to help individuals with disabilities live independently in the community.
They’ve also injected another $4 million to develop eight new community-based small option homes throughout the province.
“We work closely with clients, families, service providers and the community to develop a variety of programs and supports that Nova Scotians with disabilities may need,” she said. “Under DSP, we have several support programs where clients can receive funding and/or services to help support adults with disabilities who live at home with their families or who live independently with support from their family or personal support network.”
But, for Purdy, the waitlist full of people like Brendon waiting for a space speaks for itself.
“On a very basic level, the government has to work with communities,” she said. “Right now, from the actions that I see they’ve taken, or lack thereof, (that) tells me that they don’t really know what to do.”