How Some Canadians with Down Syndrome are Choosing to Live More Independently
By Kristen Halpen & Glen Hoos
Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #5: The Housing & Employment Issue). Click here to download the full magazine.
CEO Ross Chilton of Community Living British Columbia (CLBC) is a big supporter of independent living, with great advice for parents and caregivers of those with Down syndrome as they watch them entering into adulthood, “Our job is to make sure that they have all those things in life that you and I take for granted but might be a little more work for them. When they have a home, when they have something meaningful to do with their time, and they have friends in their lives, we’re pretty sure they’re going to have a good life.” Chilton believes this starts from a young age, “Have expectations for your son or daughter; believe in them. Give them only the support they need, and make sure they’re connected to friends in their community. By being present in community, and by expecting community to be there for us, we make life better for our sons and daughters, and for others.”
He sees the future as very bright when it comes to acceptance within our Canadian communities, “Society is becoming much more open to and supportive of diversity. That is true for your son or daughter; they are going to have more opportunities now than they would have had if it was twenty years ago. And I fully expect in another 20 years there’s going to be even more opportunities.”
Housing is an individual choice, with lots to consider, plan, and balance, and of course most considerations and planning are tied to budgets. Here, 3.21 presents XX unique housing models and XX stories of how these living arrangements came to be. Just like a house, stories and living models rarely represent a square box. We hope you enjoy these unique stories, situations, and the people they feature.
Krista Milne’s Story | Housing Style: Cluster Living
In South Surrey, British Columbia, less than ten minutes from the beach, Krista Milne proudly shows off the apartment in which she lives independently with one of her high school girlfriends. She’s especially proud of the kitchen, where she delights in making her own meals.
Chorus Apartments was the brainchild of Semiahmoo House Society, an organization that provides quality services and supports to people with disabilities and their families in Surrey and White Rock. “We wanted to build an inclusive apartment building,” says Bobbie, a support worker with Semiahmoo House. “There are 70 suites, and 21 are allotted for adults with developmental disabilities. The other 50 apartments are allotted for regular citizens from the community.” As such, the building is a model for community inclusion, as people with and without disabilities live together side by side.
Krista’s friend Mikayla was among the first to sign on when the project began accepting residents. At the time, Krista’s mom Patti expected that her daughter moving out was still a few years down the road. However, as soon as Mikayla called Krista and asked her to be her roommate, and Krista shouted, ‘Yes!’, she knew it was time.
“Before she could move in, we had to go through a personal plan, which was an in-depth study of Krista and her needs and wants,” explains Patti. This plan helped determine how much care and assistance Krista would receive.
Semiahmoo House aims for the sweet spot, providing support as needed while fostering personal growth and responsibility.
“We are staffed Monday to Friday from 6 am until 10 pm,” says Bobbie, “and on the weekends we have staff from 8 am until 11 pm. There’s a support phone that a staff member carries with them 24/7. Because we don’t have around the clock care within the building, it really forces people to grow their independence.” Each resident has set times at which they receive one on one life skills support to maximize their ability to care for themselves.
“I am so proud of Krista and her independence, and how she’s wanted to grow and learn and succeed in life and be part of the community,” says Patti. “And all of that is because of the move she’s made.”
Patti advises parents approaching the day when their child will move out to “be brave and let go. Give more credit to your child, and trust in the supports that are around. Hover from a farther distance.”
Danielle Fennel’s Story | Housing Style: Home Share
Sometimes life forces our hand.
“In 2013 I became ill,” shares Sue Porco. That was all the impetus she needed to begin exploring housing options for her daughter Danielle Fennel.
Sue approached Community Living British Columbia for help, and within a few months, Danielle had been placed in a home share with her new roommate Deb, along with Deb’s daughter Kim. Deb makes it sound easy: “We met, we got along good, she loved my animals, and the rest is history,” she says.
In truth, “When Danielle first moved in, it did take us awhile to figure each other out. But now, it’s terrific,” Deb assures us.
Danielle lives on the lower level, where she has her own kitchen, bathroom, bedroom and living room. However, the whole house is shared; Danielle is welcome to come and go wherever she likes. She usually eats her meals upstairs with Deb, and they often watch TV together after dinner.
They have established specific days for laundry and other chores. “We all kind of share making the housework together,” says Deb.
Seven years later, Sue remains very pleased with the arrangement. “I felt in my heart it was the best thing for her to be with a good person who made her part of the family,” she says. And Deb has done just that.
“Deb is very gracious. We can hang pictures on the wall and do whatever she wants in her room; it’s her space. She likes it; she loves to be with everybody, and it just works.”
Asked to identify her favourite thing about living there, Danielle has no hesitation: “The animals.” Nudged by her mom, she quickly adds: “And Deb.”
Deb laughs. “If we’re second or third, that’s okay.”
Russell Ferguson’s Story | Housing Style: Living with Family Friend
Russell’s family knew he would move out of the house someday, but argued about when it would happen. “When I’m 18,” Russ would say. “I don’t think so, maybe at 25,” responded Clare Hitchens, his mother. Well aware of the limited housing options for people with disabilities, and as sole provider and decision-maker in their household, Clare had long ago decided that a group home was not what she wanted for him. “I wasn’t sure what other options there were, beyond purchasing something and coordinating his support myself, an option that was out of reach financially.” At a meeting with Developmental Services Ontario when Russell left school, they were told about a program called, Family Home or Life Share. The program places people with disabilities in a family situation, with the goal to be included in the family’s regular life. The level of independence could be negotiated, and suitable matches made. Russell decided he’d like to go on a waiting list.
Three years later, the phone rang, and they were told there was an opening available. They had two weeks to decide upon what once had been a very abstract concept.
Clare did what she always did when faced with difficult decisions about Russell’s life. First, she talked to Russell. “I asked him if he was ready to move out, and after a resounding YES PLEASE, I called Lori, his independent facilitator. She suggested we find out more about the opening. If either of us truly weren’t ready we didn’t have to take it.”
After a long meeting with many questions surrounding expectations, goals, and ways of living, they determined Russell was a good fit for the program. “At that point they asked us if we had anyone in mind to be the home provider. This was a pivotal moment for me, one of those where you think you feel the earth turn on its axis. I’d been thinking that they would provide us with some options, and we could make the best match. But they wanted us involved from the ground up. Suddenly I saw his future as something he could choose, not just agree to.”
Russell had already been going to spend occasional weekends with a family friend, Eric. He had fun there, and was glad to be away from his mom and his sister for a spell. Eric was asked if he wanted to provide Russell with a permanent home, and the answer was YES. In what seemed like no time at all Russell was moved out.
It’s been four years since that phone call, and everything is still going well. 2020 has been rough. The pandemic hit family’s community hard, with adults living in institutionalized situations having little access to their families. Clare is grateful to have worked something out for Russell outside that system. “While there have certainly been ups and downs as we all adjust to new relationships, it is a great arrangement and he’s very happy there.” Russell agrees, “I like the people who live there, the food, and the house.” He’s also added responsibilities, enjoying “cleaning my own room, taking my own medicine, scheduling showers and cooking dinner.”
Clare hopes the future is this bright for many others but knows it takes more than just hope: “When I talk to other parents about the program, many say they don’t know about it, or that it’s not available in their area. This year has been a wake-up call about the limited housing models for all populations who need support. It’s time Canada makes choice in housing a priority at the policy and funding level so that all people can have agency in one the most important areas of their lives.”
Ivy Snow’s Story | Housing Style: Living with Relatives
Ivy’s house includes a family of four, with her sister, brother-in-law, and two young nieces all under one roof. The basement, where she has a bedroom and bathroom of her own, is her space.
“I always knew growing up that one day, Ivy would live with me,” says big sister Kasi. That time came sooner than expected when the pair’s mom accepted a job transfer from BC to Ontario.
“Ivy was going to go with her,” recounts Kasi. “But (my husband) Will and I came together and said, ‘You know, Ivy has her work, our other sister’s here, why doesn’t she live with us instead of uprooting her across the country?’”
And so, Ivy relocated to the family’s basement, where she has a bedroom and bathroom all her own, while also having the run of the rest of the spacious home. It’s the perfect headquarters for Ivy’s very busy life.
Ivy – a boxer, swimmer and bowler – has two jobs. She also has many friends who live nearby, whom she sees daily. She does chores around the home and loves playing with her two little nieces. Suffice it to say, she is rarely lonely and never bored.
Kasi admits to a learning curve. “When Ivy came to live with us, there was so much to learn. Staying on top of appointments for hearing aids, eyes, cardiology for her heart, her work, her activities. I really had to adapt to it.”
There is no question that the effort has been worth it. “It makes me so happy to see Ivy genuinely happy,” says Kasi. “A lot of people might look at something like this and think that the work would outweigh the benefit. Honestly, I wouldn’t want her anywhere else. Just knowing that she’s with us puts our mind at ease. And if anybody is able to provide that as a sibling, I say go for it.”
“We have seen some great growth in Ivy. She always had a level of independence living with our mom, but since living with us that level of independence has gone up significantly. She’s very self-sufficient and confident, but she knows if she ever feels lonely or she misses mom, or she’s just not feeling as confident, we’re here for her.”
“I feel safe with my big sis,” affirms Ivy. And as for sibling rivalry, when asked if she gets along with her sister, Ivy replies as if the answer comes to a surprise even to her. “Actually, I do, yes.”
Nick Popowich’s Story | Housing Style: Supportive-Living
Landing upon Input Housing Corp’s (Input) website you are greeted with headlines: “Supported Independence”, “Neighbourhood Living”, “Transformational”, and last but not least, “Now Complete!”. Input, a non-profit corporation, has happily turned a 2012 dream into a 2020 reality for its now ten residents, all young adults with intellectual disabilities.
Nick is now 30 and has Down syndrome. Upon entering adulthood, his parents started having conversations with Nick’s friends’ parents about independent living, as a group. According to Elizabeth Popowich, Nick’s mother, the group felt as though, “…this group of friends could live independently with a little bit of support, but we really wondered how would we make that happen.”
The first step was forming a volunteer, non-profit corporation, made up of five families, which eventually expanded to ten. The group’s business plan took a unique approach: ownership was key. Input families designed and then financed the project, working with Westridge Construction Ltd. to build a condominium building of ten, self-contained units, with common areas and a live-in building manager on the main floor. Today, Input oversees the operation of the building with the on-site building manager, in conjunction with the condominium board. Input residents receive support services through Creative Options Regina, or COR. Offering a financially secure investment, the individually-owned concept “also provides residents the opportunity to become more independent, confident and fully engaged in the larger community”, as Input’s site indicates. Nick’s parents, Elizabeth and Greg, acknowledge the Input group of families as, “a committed, like-minded and skilled group who accomplished together what we could never have achieved as individuals.”
The Popowich family has planned for the future with a caring, forward-facing attitude. The parents credit the real success of the project to independence, owned solely by Nick. “He has friends and a whole social life that we didn’t create for him. He did that,” says his mother Elizabeth. Nick’s dad Greg adds, “It is wonderful to see Nick connecting and relying even more with his ‘family of friends’. The fact that Nick is becoming more self-sufficient also takes some pressure off of his brother, Lucas. The two of them are very close but we don’t want Lucas to feel all the responsibility for his brother as we age. Helping Nick do for himself is the best gift we could give both our sons.” Nick adds further, “I am most proud of becoming a man and moving out for the first time. My brother did it and I was really proud for Lucas. Now I want him to be proud of me for moving out as well. It took a long time for this to happen and to have the courage to make it happen.”
When speaking about his new living arrangement, Nick has lots to share: “This is my first time moving out and I love every minute of it. My favourite thing is seeing my friends, but especially my girlfriend, Bree. I am pretty excited about all of us living in the same building. I am eating well. I am pretty living my own life and that’s how life should be. I also love my new tv, a 65-inch tv that I bought with my money from my job!” Day-to-day living is approached as a team, according to Nick, “We do lots of things together. We do activities, we learn life skills, we get treated like adults. Basically, it’s the whole togetherness that brought this plan together. Every evening, we all get together for supper in the big dining room on the main floor. We all take turns with clean-up after supper. Book Club is once a week on Thursdays and we do Friendship Club once a week. We (also) take a class called, Tell It Like It Is, which is about human sexuality.”
It has been a happy adjustment for Nick, but he’s thoughtful and careful not to “offend” his parents, saying he’s “happy to not be living in a basement anymore!” thoughtfully adding, “I miss my parents sometimes. I miss Coco (the cat). I miss the Hotel Popowich, where somebody else did my laundry and all the cooking…I love my childhood home; it will always be a part of me.”
Input’s blog page wraps the current state of affairs up nicely with: “Though it feels as if we have completed a journey, the truth is: this is just the beginning.” Nick prefers to quote Aerosmith when offering advice about the journey: “Dream on, dream on…dream until your dreams come true.”
More Housing Resources & Inspiring Stories
- Developmental Services Ontario Housing Toolkit: Explores how to build a vision for your housing situation, complete with steps including financing, options, and managing housing supports
- The Housing Toolkit from the Summer Foundation in Australia, workbook-type resource to help with decision making. In depth at 101 pages!
- Community Living Ontario’s ConnectAbility Site (various contributors)
- My Home, My Choice Housing Options Info and Chart
- The CDSS “Housing Resource Hub”: housing models, Federal Government resources and more
- The Future Looks Bright: New Approaches to Making a Home for Someone with an Intellectual Disability by Community Living