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A mother's dream for inclusive, arts-based housing takes shape

By Louise Kinross

A community garden and farmer’s market, arts programs, yoga and a café are part of a Toronto housing community Skye Gross (above left) envisions will bring adults with disabilities and artists together to live and work.

“This is a radical departure from anything we’ve seen before,” says Skye, whose daughter Rachael, 18, has complex medical and developmental needs. “The current housing, recreation and job opportunities for people like my daughter are minimal, expensive, isolating and stigmatizing. I don’t want that for her, so I decided to build something better.”

Skye joined with Jan MacKie (right) and Karin Farkashidy (centre) to create the non-profit Triluma Living Collaborative, which aims to develop this new model of housing. The three women have a long history as leaders in Holland Bloorview’s Spiral Garden and Centre for the Arts.

“We’re looking to create a holistic community that will be completely inclusive, not just of people with developmental challenges, but of artists, wellness practitioners, families and community organizers,” Skye says.

The project will incorporate housing as well as commercial ventures that draw the public in.

Triluma is a response to the current housing crisis for adults with developmental disabilities in Ontario.

Earlier this year, a report from the Select Committee on Developmental Services said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. The report also noted that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.

Since then, the Ontario Ministry of Community and Social Services has partnered with MaRS—the medical research and social innovation hub in Toronto—to develop and test new housing models.

In April, MaRS issued a Challenge Brief with this question: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”

Skye hopes Triluma will be chosen as a MaRS incubator project to receive pilot money.

“No matter how lovely I make our beautiful, accessible home, eventually I’m not going to be here anymore and I don’t want my daughter being thrust into a strange environment with people she doesn’t know,” Skye says. “People want affordability, an end to isolation, and this notion of meaningful livelihood—as opposed to killing time watching TV. Our model addresses those elements.”

Skye hopes that a Triluma community will be operational in five years. “To start with we’ll need government support, but we won’t rely on ongoing government funding. Our financial model will allow residents to pay a reasonable rent in exchange for contributing their time to building and sustaining the community.”

That could mean growing food in the garden and selling it at a weekly market, or working in the café or in an arts program.

To launch their inclusive community building model, Triluma is offering Welcoming Back the Light workshops on Sunday Dec. 7 and 14 from 2-4:30 p.m. at Evergreen Brick Works.

Bring your kids and learn how to build lanterns and work with light and shadows in preparation for a Winter Solstice celebration on Dec. 21 at 5:30 p.m. All are welcome!

Community Living looks beyond adult 'group homes'

By Louise Kinross

Several years ago Chris Beesley wrote a BLOOM piece about how raising his son Mitchell, who has Fragile X and autism, had changed his life and career aspirations.

I met Chris last week in his new role as CEO of Community Living Ontario. I wanted to talk about options for housing for adults with intellectual disabilities.

Next week 100 of Community Living’s executive directors are coming to Toronto to brainstorm ideas that move beyond the traditional group home. The group will hear updates from an Ontario Developmental Services Capacity-Building Task Force on Housing, the federal program My House, My Choice, and a partnership between the Ontario Ministry of Community and Social Services and MaRS research hub, which issued a challenge brief to develop creative housing solutions for people with developmental disabilities.

Earlier this year an interim report from the Select Committee on Developmental Services noted there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years.

So with my son now 20—as is Chris’s son—I wanted to hear about possibilities for change.

BLOOM: What is Community Living Ontario?

Chris Beesley: We support individuals and families in creating full citizenship for people with developmental disabilities. That means living where and with whom they want to live, inclusive education, work—either paid or volunteer—and recreational and social connections. Everyone needs to have friends.

BLOOM: Can you update us on new provincial funding for developmental services as a whole?

Chris Beesley: In the provincial budget $810 million dollars over the next three years was put into developmental services. The Ministry of Community and Social Services currently has a budget of about $1.7 billion. When this is rolled out in its entirety, it will bring the ministry's budget to a little over $2 billion per year. The net result is that there will be an extra $372 million annually in the system.

BLOOM: It sounds like a lot of money, but given the needs, it isn’t.

Chris Beesley: The money will be used to eliminate the wait list for Special Services at Home and Passport funding, and to cover new people coming into the system. They’ve also committed to 1,400 residential spaces.

BLOOM: But if 12,000 people are on a wait list, 1,400 spaces is just scratching the surface. What kind of residential spaces?

Chris Beesley: Some will be group homes, some will be individuals living with a family, like a foster situation, and some will be supported independent living. Our goal is to see government support individuals in their residence of choice in a flexible way. Eventually, we’d like to see residential dollars flow through Passport funding. Passport is individualized funding, but it’s currently capped at $25,000 and can only be used in the community, not for overnight support. Right now there are individuals who receive hundreds of thousands of dollars for residential support a year, but it flows through agencies. We’d like the option, where appropriate, to unbundle that from the agency and give it to the individual, so the individual is in control of where they live and who supports them.

BLOOM: What’s an example of out-of-the-box thinking?

Chris Beesley: Twenty five years ago 10 families came together to create an intentional community in Pickering. They accessed federal and provincial funding to construct a housing co-op with 115 units, seven of which would be occupied by their sons and daughters. They pooled the support funding their children received.

BLOOM: How has it worked out?

Chris Beesley: It’s worked very well. But the parents have had to do a lot of the heavy lifting. Those parents are now in their 70s and wondering how they’re going to keep this up. We’d like to see better coordination and planning across government ministries, municipalities and agencies, so parents aren’t the ones trying to make all the connections.

BLOOM: What are you discussing at your housing conference?

Chris Beesley: We want to hear from our executive directors about what they’ve done, or seen, in their communities, that’s promising. What’s working, what isn’t, what are the barriers and the opportunities? We want to get a lay of the land so we can look at moving beyond group homes. We want to identify practices and models that the government may want to invest in.

BLOOM: Is there anything new you can share with us?

Chris Beesley: I just learned about how Community Living London has been successful in finding investors who want to buy houses, so that the agency’s money doesn’t get locked up in the bricks and mortar. They have 30 homes and 21 of them are owned by investors.

BLOOM: Do these investors have a connection to disability?

Chris Beesley: No, not necessarily. They’re people who want to buy a house as an investment and they want a reliable tenant who won’t skip out, and we’re able to provide reliable tenants. Community Living London has become known as a facilitator for matching great tenants and investors.

BLOOM: How can parents learn about what comes out of your conference?

Chris Beesley: Once we’ve had the event we’ll write a report that we’ll post on our website There's good stuff going on, but our challenge is to create the space for this conversation and to bring all of the parties together.

BLOOM: What ideas are you thinking about in terms of Mitchell moving out?

Chris Beesley: We’ve thought about selling our house and buying two townhouses, so we're close: one for Mitchell and one for my wife Lori and I. Maybe we'll move near a college or university so we can find a student who can live with Mitchell for cheap rent, and in return would agree to be there every night and morning. Of course we'll need be part of the support, but this is a model that works for others so it's definitely something we'll explore.

Ontario, MaRS pose citizen-centred housing challenge

By Louise Kinross

Two years ago we had the assessment necessary for getting an adult with an intellectual disability onto the list for community services, including group homes, in Ontario.

Ben, D’Arcy and I spent 3 ½ hours filling out what was a highly cumbersome, overly complicated survey that was supposed to measure how much support Ben needed.

Given we'd taken the morning off school and work it was galling to be told during the assessment that there were no services to be had.

We were asked to pick a lead agency that would be responsible for Ben’s needs, and we chose L’Arche, the homes for people with intellectual disabilities developed by humanist Jean Vanier.

Since then we haven’t heard a peep. Recently we met with a woman who helps families plan for their child’s transition and she encouraged us to reconnect.

This is the update D’Arcy provided after a phone conversation with Developmental Services Ontario:

-There are no longer “lead agency” designations (why were we not informed of this?).

-Ben needs 19- to 24-hour support in a home with no greater than 3:1 resident/support worker ratio, but these types of homes are non-existent. Any available spots would go first to people with complex medical needs.

-The list Ben is on is not a waiting list, but a needs-list. We are low priority because our family has two working parents.

-To have any hope of getting a call-back, it was recommended we raise the resident/worker ratio to 5:1.

Every parent dreams that their child will lead a rich adult life, one in which they choose to do things that matter to them, and are supported in a way that allows them to thrive and be happy.

To have your child’s future reduced to a conversation about worker numbers, with no discussion about the actual group home, its philosophy, the way it works, its strengths and weaknesses, where it’s located, and who else is there, is a slap in the face.

Back in March, I tweeted about the Select Committee on Developmental Services looking at the crisis in housing for adults in Ontario. At that time, the committee said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years. The report also notes that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.

It’s common knowledge that the only time people are placed in group homes long-term is when their parents die. Once that happens, who will be there to ensure the fit is a good one? Our experience has indicated that this is a numbers game that has nothing to do with the human being involved and their hopes and dreams.

Today I was thrilled to see this challenge to find solutions to the crisis by the Ontario Ministry of Community and Social Services and MaRS, the medical research and social innovation hub in Toronto.

In defining the problem, the MaRS Challenge Brief says that $1.15 billion is spent on residential support for about 18,000 adults with developmental disabilities in Ontario each year, but 7,300 adults are on a wait list (not sure about the discrepancy from the Developmental Services Committee numbers). The brief says that as of July last year, there were over 800 complaints by families to the ombudsman.

The Community and Social Services Ministry has partnered with MaRS Solutions Lab to develop and test new approaches to transform the system.

The challenge question posed was: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”

Six areas of research were identified. The paper says next steps are to:

-Convene partnerships across the four to six ministries of the government that impact people with developmental disabilities

-deepen understanding about people with developmental disabilities and citizenship

-Explore pent-up demand and information strategies that better inform future planning

-Explore and co-design citizen-centred alternatives. “Many social problems are often defined from an institutional perspective,” the brief says. “The lab takes a different view. Using tools from design thinking we try to gain a deep understanding of the problem from a citizen or user perspective. Not by just analyzing the numbers, but by also studying the people."

-Transform the system by exploring how to increase capacity to support family- and community-led innovation.

-Clarify and quantify developmental services objectives that are citizen-centred.

A number of our readers are very involved in these issues. Please give us your feedback on the details of the challenge PDF!

Mama and Dad

A mother's dream for inclusive, arts-based housing takes shape

Community Living looks beyond adult 'group homes'

Ontario, MaRS pose citizen-centred housing challenge

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