Four Peterborough families are close to achieving a goal they’ve pursued together over the last seven years. If all goes according to plan, the families hope that sometime next year their four adult sons, all of whom have developmental disabilities, will move out of their parents’ houses and into their own apartments, where they can live more independently.
The four families, who operate under the name Shared Dreams for Independent Living, have banded together in a years-long effort to find accessible and affordable housing for their sons.
In 2018, the group had a breakthrough. The City of Peterborough secured $500,000 of funding on behalf of the Mount Community Centre to renovate space in the Mount for Shared Dreams. The funding came through the federal and provincial governments’ Investment in Affordable Housing program, with Shared Dreams and the Mount Community Centre fundraising to cover the balance of the renovation cost.
Earlier this year, that renovation was completed, and the result is a 3,400 square foot suite that includes a common kitchen and common living spaces in addition to five private bachelor apartments that have a bedroom, bathroom and living room each. (Each tenant of Shared Dreams will hold their own lease for their bachelor unit. The fifth unit is still available.)
There’s just one barrier remaining before the move can happen, and that is securing funding for the 24-7 support the men will need to live in their apartments successfully. Shared Dreams is seeking that funding from the provincial government.
According to Larry Elliott, the treasurer of Shared Dreams and the father of 33-year-old Matthew Elliott, who would move into the suite, the group has been in discussions with Ontario’s Ministry of Children, Community and Social Services (MCCSS) for years about residential support funding for their sons. Since COVID-19 hit, he says the ministry has been unresponsive to their budget requests. “The stalemate silence from the ministry is hard to live with,” he says.
In the absence of further funding for residential support services, the men and their families are currently paying the Mount rent for the apartments, even though they can’t move in. Rent for each unit is set at $628 per month.
Shared Dreams will be “a unique, person-centred and fully accessible home for five men who will live independently, within our community,” writes Andi van Koeverden, director of strategic advancement at the Mount. “We simply can’t wait to welcome the men ‘home’ to the Mount.”
“We’re so close to the finish line now,” says Christine Cannon, the president of Shared Dreams and the mother of Christopher Cannon, a 31-year-old with cerebral palsy who would move into the suite.
A spokesperson for the MCCSS emailed Peterborough Currents, writing that the ministry has had “extensive communication” with representatives from Shared Dreams for Independent Living. “The ministry is committed to this ongoing dialogue to fully understand the support needs of the individuals involved and the residential support services funding request,” the spokesperson wrote.
In the meantime, the four families continue to manage much of their sons’ care themselves. Like thousands of other families in the province, they piece together various supports and funding from a patchwork of government programs to keep their sons cared for and engaged in the community.
Their sons receive Ontario Disability Support Program (ODSP) payments, for example, as well as funding for community engagement through the provincial Passport Program. The Passport Program guarantees at least $5,000 a year to every Ontarian with a developmental disability, which they can spend on community participation services and supports. (Individuals with complex needs can receive up to $35,000 annually through the Passport Program.)
“Christopher’s life is really full despite the fact that he is living with challenges,” his mother says. “He has lots of friends and lots of neighbours who he associates with.” (Christopher and Matthew are both very social and communicative individuals, but without speech.)
Despite the full life Christopher leads now, Christine Cannon can’t help but imagine what it would be like for her son to have his own apartment. “It will mean that he is living the life he deserves to be living as an adult man in Peterborough,” she says. “It will mean he is transitioning from an adolescent who lived at home with parents and was raised to adulthood, and then moved out on his own to be a typical adult male living his own life.”
To achieve that, Christopher needs more than the occasional support he is currently able to access through his Passport dollars. He needs 24-7 in-home support to replace the care his parents currently provide.
Ontario’s MCCSS funds residential support for people with developmental disabilities, usually by contracting with local agencies to provide the services. In Peterborough, for example, one major provider of residential supports is Community Living Trent Highlands (CLTH). CLTH operates 16 group homes with 24-7 support and provides part-time support to about another 200 people who live independently, according to executive director Teresa Jordan.
All four of the Shared Dreams men are eligible for these kinds of residential supports. But in Ontario, these services are a finite resource, and there is a waitlist for them. According to one report, the provincial waitlist had grown to over 15,700 people by 2017.
But individuals don’t move up that list in an orderly fashion. The list is triaged to respond to individuals and families who are experiencing a crisis, such as homelessness or the death of a family caregiver. “If you are kind of a well-adjusted person whose family is having some success piecing together supports and you’re not going into crisis, it is conceivable that you will stay on a waitlist for over 20 years,” says Jordan.
That description fits the Elliott family well. 33-year-old Matthew lives at home, and the Elliotts hire support workers to help their son with personal care every morning and evening. On weekdays, other support workers accompany him as he goes into the community, usually to a day program at the non-profit Christian Horizons, or to the Peterborough Wellness Centre for a workout and a swim. Matthew currently has enough access to provincial funding streams that his parents don’t pay out of pocket for his support.
The Elliotts are managing, and that means Matthew isn’t moving up the regional waitlist. His estimated wait for a fully-funded spot in a group home is 10 years — the same as it was when he first went on the list 15 years ago, according to his father.
But with both parents advancing into their 70s, Larry and Marg Elliott worry they won’t be able to continue managing Matthew’s care for much longer, and that a family crisis might precipitate a move they aren’t able to plan for and aren’t able to have a say in.
“We are desperate” to find a housing solution, says Larry. “We’re approaching that threshold when Matthew may qualify for one of the residential spaces [because of] the realities that limit our ability to support him here in our own home.”
The Elliotts don’t want to wait for a personal crisis to move Matthew into his new housing. In Larry’s estimation, triaging the waitlist to prioritize crisis cases “compels families to become frustrated [and] diminished, and then force[s] them to transition from a position of weakness.” Instead, he and his wife want their son to proactively move out now, when they are still able to support him in the transition, Larry says.
That’s the vision Shared Dreams has been working towards. But it means the families need provincial funding for housing supports before they would otherwise access them through the waitlist.
“It’s been a seven year haul from the first conversations to where we’re at today,” Larry says. “Leases have been signed. Rent is being paid. And we really can’t take advantage of the space … because we don’t have a commitment from the ministry.”
A long-simmering crisis
The Shared Dreams families are attempting to secure supportive housing for their sons amidst what is widely acknowledged to be a critical shortage of residential services for Ontarians with developmental disabilities.
In 2013, the province’s auditor general noted the waitlist for residential services was growing faster than the provincial government could accommodate. In 2016, the Ontario Ombudsman documented numerous shocking examples of the hardship faced when families can’t access the support they need to care for disabled loved ones. And in 2018, the Ontario Developmental Services Housing Task Force called for urgent action to address what it called “a crisis that has been growing steadily more serious for at least 20 years.”
Jordan estimates that 50 percent of Ontarians with a developmental disability don’t currently have access to core housing support from an agency like hers.
“We recognize that demand for developmental services has grown considerably over the last fifteen years,” a spokesperson for the MCCSS wrote to Peterborough Currents. “The ministry will be engaging this Fall with people with developmental disabilities, their families, service provider partners, and experts to get their feedback and work together to improve the developmental services sector.”
Jordan says that in addition to the high levels of need for residential support services, people with disabilities in Peterborough face the same challenge as many others in the city when it comes to housing: a lack of affordable stock.
Even when her agency does have funding available to offer residential supports, Jordan sometimes can’t put that funding to use for lack of housing. “We often have trouble filling our supported independent living vacancies, because we just can’t find apartments,” she says. It doesn’t help that the ODSP maximum shelter allowance is $497 per month. That puts most apartments out of reach for many of her clients, she says.
“So it’s just about having good clean, affordable, high quality housing,” Jordan says.
A family-driven model
One reason that Shared Dreams has had to work so hard to access provincial funding might be that the housing model they are proposing is relatively novel.
The families are seeking 24-7 residential support for their sons, but not in a traditional agency-run group home. That’s because they haven’t been awarded spots yet, but it’s also because they want to be more active in planning and delivering their sons’ support than would be possible in an agency setting.
According to Jordan, “The big unique thing [about Shared Dreams] is that the families will continue to be so integrated into the support.”
To achieve this, the families want to continue to manage their sons’ ODSP and Passport funding, rather than ceding that responsibility over to an agency, Larry Elliott says. Typically, a group home would assume control of those funds when they accept a new client.
Jordan calls individualized funding arrangements like this “the way of the future” for developmental services. At the same time, she believes there will always be a role for agencies to play, especially for families who can’t or don’t want to be involved in managing and delivering their children’s support.
The Shared Dreams families have had to spend years advocating for themselves to create an individualized housing solution for their sons, and not every family has the resources or capacity to do that work.
According to Jordan, that’s a reflection of a broader challenge within the sector. “The toughest part of the developmental sector [is] that often people who know what doors to knock on and know what kind of ruckus to raise often do get extra,” she says.
Jordan says she’s been questioned about whether the Shared Dreams families are trying to jump the waitlist queue. But she’s supportive of the initiative, and has partnered with Shared Dreams to apply for their funding. Jordan points out that the families have been on the waitlist for a long time, have complex needs, and with aging parents would likely receive a residential offer regardless. They’re not “coming completely out of left field when they’re asking for this funding,” she says.
“We’re not jumping ahead of a waitlist. This is about creating our own solution to a waitlist,” Cannon says. “It’s irresponsible for people in Ontario to have to wait on a waitlist for their adult lives to start. There’s other ways for that to happen.”