Home Sweet Home

By Glen Hoos

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #25: The Housing Issue). Click here to download the full magazine.

When it comes to housing for people with Down syndrome, there is no one-size-fits-all solution. Varying support requirements and differing family circumstances mean that what works for one individual and family may look vastly different from what works for another.

Fortunately, there are lots of options on the menu.

In Canada, supports for people with Down syndrome and other intellectual and developmental disabilities fall under provincial jurisdiction, so the available services as well as the qualifications and processes for accessing them will depend on where in the country you live. However, the following broad housing models are common across Canada and in many other countries. We cover them in order of the most support to the least.

For people with Down syndrome who require a high degree of support with the activities of daily living, a staffed residence can be an ideal solution.

In the staffed residential model, commonly known as a group home, two to four people with developmental disabilities live together in a home that is owned and managed by an organization that receives funding from the provincial government. Like traditional roommates, residents share common areas of the home, such as the kitchen and living room, while having their own bedroom.

The staff do not live in the home but are scheduled to provide support during daytime hours and/or overnight, depending on the needs of the residents. Their role is to facilitate the independence of residents by assisting with things like cooking, budgeting, personal and medical care, recreation, and navigating the community.

Rebecca, a young woman with Down syndrome, has lived in a staffed residence in Langley, BC for two years. She shares a spacious home with a large yard with one roommate, who has autism. During waking hours (7:00 am – 11:00 pm), each woman has a dedicated, one-on-one support worker at all times; overnight there is one staff member in the house.

This individualized support enables Rececca to enjoy a full and happy life including daily activities like music therapy, Zumba, swimming, picnics, gardening, and visits with friends, as well as community inclusion through monthly dance parties and regular social gatherings. Staff have also helped her master important personal skills that she didn’t have when she first moved in.

Rebecca stays connected with her family through nightly phone calls and spends every Sunday with them – though by the end of the day she’s always anxious to get back to her place. A couple of times a year, she proudly hosts a family party in her own home, with assistance from the staff. Her family works with Rebecca and the staff to set annual goals, and has frequent communication with staff to ensure she continues to flourish.

For a person with Down syndrome who doesn’t require the high level of hands-on support provided in a staffed housing model, shared living can deliver the perfect balance between independence and support.

In a shared living model, the individual lives in a home with another person or family who is contracted by a local service provider agency, which receives provincial funding to provide them with ongoing support. The most common form is home sharing, in which the person with Down syndrome lives in the home of the shared living provider. In cases where the person with a disability has a home of their own, they may qualify for live-in support in that home.

Danielle began a home share arrangement 12 years ago when her mom became ill. She lives on the lower level of a home owned by her home share provider, Deb, 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.

Danielle and Deb didn’t know each other prior to moving in together, but they have become like family. For others, the family connection is more literal.

After their mom moved to another province, Ivy, who has Down syndrome, moved in with her sister Kasi and her family. She lives in the family’s basement, where she has a bedroom and bathroom all her own, while also having full access to the rest of the 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 nieces. Suffice it to say, she is rarely lonely and never bored.

“It makes me so happy to see Ivy genuinely happy,” says Kasi. “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.”

For those with Down syndrome who are truly ready to strike out on their own, an independent living situation may be just what they are looking for.

In a supported independent living model, the individual rents or owns a home where they live without a paid caregiver in the home. However, that doesn’t mean they don’t have any support available to them. A support worker can visit regularly to help with tasks ranging from cooking and household upkeep, budgeting, personal care, and connecting to the community. The support worker also helps the person develop whatever skills they need to deepen their independence and confidence. 

Support may be delivered in a one-on-one format, or in a shared arrangement in which the support worker assists multiple people who live close together – perhaps in the same building or complex. These arrangements are often referred to as cluster living.

Krista lives independently in an apartment she shares with one of her friends from high school. The building, Chorus Apartments, was established by Semiahmoo House Society, an organization that provides quality services and supports to people with disabilities and their families in Surrey and White Rock. The building is a model for community inclusion, as people with and without disabilities live together side by side.

As the service provider, Semiahmoo House aims for the sweet spot, providing support as needed while fostering personal growth and responsibility. Each resident has set times at which they receive one-on-one life skills support to maximize their ability to care for themselves.

Krista has thrived under this arrangement. “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 her mom Patti.

Patti also has some outstanding advice for parents looking ahead to the day when their child with Down syndrome moves out, into whatever housing model is right for them: “Be brave and let go. Give credit to your child, and trust in the supports that are available. Hover from a farther distance.”

For an inside look at several housing models for people with Down syndrome, watch DSRF’s short film, Home Sweet Home.