Community & Current Events
How 3 adults with developmental disabilities found independence
With a little support Krystal Nausbaum has been able to move out of her family home. Credits: Sian Richards
Community & Current Events
How 3 adults with developmental disabilities found independence
Making the transition to independent living is a challenge for many young adults, but even more so for those with developmental disabilities. Here's how three people and their families made it work.
Krystal Nausbaum, 27
Home is: a shared apartment in Toronto.
Getting here: Krystal, an actor who has Down syndrome, was looking to move out of her family home. Then 25, she had some away-from-home experience as a teen at summer camp, but she needed extra support to make the move into an apartment on her own. "I was ready to challenge myself," says Krystal, "and I didn't feel I could do that in my mom's house—in that environment, if you know what I mean."
Believe me, I do—I'm Krystal's mother. When she and I attended a workshop presented by Lights, a program run in partnership with Community Living Toronto, something great happened: We teamed up with Karen Denton, a young woman with Kabuki syndrome (a genetic mutation that can cause developmental disability, among other issues), and her mother, Margaret Harper. Later, we met with Lights senior facilitator Laura Starret, who helped us create our own supported-housing model. The five of us agreed the apartment should be within walking distance of a subway station and have three bedrooms: one for each daughter, and a third for a "friendly housemate" who would live rent-free while providing mentorship and security.
Krystal Nausbaum with her mom, Madeleine Greey.
Challenges: Finding the perfect housemate was tricky. We sent email blasts to our disability networks and posted ads through community colleges that offered social service diplomas. Margaret and I conducted preliminary interviews before introducing Krystal and Karen to the finalists. The other big challenge was finding a three-bedroom apartment in Toronto's hot and frantic rental market, which meant weeks of shlepping to open houses before finding a duplex with a disability-friendly landlord. Rewards: Though the logistics of the living situation have since changed, the arrangement was an enriching experience for everyone involved. Since the three housemates all lead busy lives—housemate Maggie Sulc works full time in publishing, Karen works lunch hours at a high school and Krystal acts for film and TV—they each had to make an effort to take part in shopping, cooking and cleaning. A bulletin board posted in the kitchen outlined a weekly list of household chores, along with a communal calendar noting everyone's schedule so they could watch out for one another.
Krystal says that, in just over a year, she learned a lot. "Now, I can make things happen for me and not have other people do it for me," she says. Karen, on the other hand, plans to one day live "independently" with a roommate, minus the friendly housemate. Why the quotes around independently? "Maggie has taught me that there's no such thing as independence," says Karen. "We all rely on someone." Lesson: Take the risk and help your adult child move out. I wanted to make this happen for Krystal before I was too old to face these challenges and to support the move's inevitable growing pains. It's a large task that can be made easier when partnering with other parents.
Shawn Grieve, 26
Home is: a basement room in a Red Deer, Alta., house.
Getting here: Shawn's first move from his parents' house was to a group home in Olds, Alta. Shawn, who has Down syndrome, was matched with a male housemate with autism. This arrangement lasted less than a year, as the two men had widely different needs and interests, and Shawn moved back home temporarily.
After a few months, Shawn's next move was to Red Deer, into a contracted private home that provided supported living (deemed a "proprietorship" by Alberta Human Services). Shawn moved in with a couple and their child. Soon afterward, the family expanded and, by the third year, everyone involved felt that the home was no longer a good fit.
Then, in May 2014, Shawn moved into the basement of a small bungalow owned by proprietor Aimée Hartnoll, 32, and her husband, David, 33. Few people understood Shawn's needs better than Aimée; she had worked one-on-one with Shawn for three years, helping him find paid work, volunteer opportunities and athletic and social activities.
Challenges: It's not possible for Shawn to be alone. When he sweeps the floor or takes out the garbage at his part-time restaurant job, support worker Nicky Lambert is sitting nearby. When he travels to Special Olympics golf, bowling, bocce or soccer, he does it with help. All of his social activities, such as watching wrestling on TV with his buddies and enjoying a community concert, are arranged for him by his parents, or by Nicky or Aimée, often at Shawn's suggestion. One of Shawn's biggest hurdles is finances: Comparing prices and knowing the difference between income and expenses are frustrating concepts. He works with Nicky to establish a monthly budget.
Rewards: The coordinated efforts of his family, proprietors and support worker mean Shawn can live safely in the community. "He's such a pleasure to be around," says Aimée. "I know many other proprietors who have rules and regulations in their homes. We don't. Our arrangement is based on mutual respect." Shawn has weathered all changes of moving from house to house with gratitude, and he shows it by giving back. In the winter, he shovels snow, and in the summer, he mows the lawn at a neighbourhood seniors' home.
Lesson: Research deeply. Shawn's mom, Karen, applied through Alberta's Disability Services to get into the Family Managed Services program, which gives funding directly to the families of adults with developmental disabilities for both supported housing and daytime one-on-one support. Families decide how this funding should be used—whether for training in basic skills, daily assistance from a proprietor or even fun outings with a respite worker—to best suit their adult child's needs and increase their independence and participation in the community. Parental involvement is key in planning the transition to independence, but the ultimate goal is for those with disabilities to realize their own goals.
Lucy Stapleton*, 45
Home is: A separate unit attached to a family home in Vancouver.
Getting here: Nothing came easily to Lucy. Born with fetal alcohol spectrum disorder (FASD), a disability caused by prenatal exposure to alcohol, Lucy struggled through childhood with an intellectual disability, compounded by outbursts and lack of impulse control—all associated with her FASD. By her 30s, she was married and receiving assistance from support workers, but she couldn't manage finances or her own health. At 300 pounds, she had diabetes, high blood pressure and high cholesterol, and she grappled with basic hygiene. Above all, her marriage and living arrangement (with her in-laws) were at risk, as she had trouble cementing healthy relationships. Then, in 2009, Lucy made some life-changing decisions: She separated from her husband and moved into the home of Rebekah Gage.
Rebekah, 35, is a Vancouver home-share provider with PosAbilities, a nonprofit funded by Community Living BC that, among other services, contracts families or individuals to open their homes and hearts for the shared-living program. But to Rebekah and Lucy, inclusion is a very important part of the arrangement.
In the main house, Rebekah lives with her husband, Joshua, and their two children, Eden, 5, and Joshua, 8. Downstairs, their niece, Molly, 16, and Rebekah's mom, Debbie, reside in a basement suite. Steps away, in a coach-house suite above the garage, Lucy lives with her pet chinchilla, Chloe. And the arrangement couldn't be happier. "When Lucy walks in the door for dinner each evening, the kids often excitedly call out her name," says Rebekah. "She's greatly loved. We all view Lucy as we would any other family member."
Challenges: Every day, Lucy faces struggles such as counting change, booking doctor's appointments and knowing where and how to meet a friend for coffee. Impulsivity is another issue. At home or in relationships, she works to curb outbursts and nurture trust. In stores, she fights the urge to make impulse buys with help from Rebekah. "I support Lucy in every aspect of her life," says Rebekah, whether it's taking her to appointments, communicating with doctors, setting up a peer group like Special Olympics or helping with public transportation.
Rewards: Lucy has lost 70 pounds and no longer requires insulin for her diabetes. She participates in Special Olympics bowling, curling and rhythmic gymnastics. Increased responsibilities, such as tidying the coach house with assistance and holding down a job at Church's Chicken, have boosted her self-esteem. What does she like best about her living situation? "I am part of a family and able to make decisions about my life," she says. Lesson: Communication is vital to a successful home share. Rebekah advises parents to find a support worker who is a good communicator and who will advocate for their developmentally disabled adult child. "Find someone who is knowledgeable about supports and services in the community, like transportation funding and grants, work or volunteer programs and recreational activities."
*Name has been changed.
House hunting? Here's where to start
Adults with developmental disabilities don't fit into one easily defined category, nor can their varying needs be filled by a single housing solution. Research, time and careful planning are needed to make the process work. "It's a misconception that finding housing is the only challenge," says Angela Bradley of Community Living Toronto. "The real challenge is finding and funding support." For those with intellectual disabilities, that's where the Canadian Association for Community Living comes in. It's the largest organization of its kind in Canada, offering much-needed guidance for individuals who are ready to make the transition. Many families also visit agencies to learn about services and funding.
Looking online is another great way to see what's available. These sites are worth surveying:
This moderated site will help you find local resources for supported housing in Ontario.
Canadian Association for Community Living
Learn about rights, supports and inclusion for people with intellectual disabilities at this national site that can direct you to the provincial or territorial association closest to you.
Canada Mortgage and Housing Corporation
CMHC invests $2 billion per year to help low-income Canadians find quality affordable housing. Find a program in your province or territory.
This organization serves Ontario and Saskatchewan residents with developmental disabilities and their families with supported independent living, home services and community residences.
There are 29 L'Arche communities, from Vancouver to Cape Breton, N.S., where people who have intellectual disabilities live with those who assist them in family-like settings.