Kenora mother says supportive housing shortage leaves her fearing for her autistic son

The mother of a young autistic adult in Kenora, Ont., says there's no supportive housing available for her 24-year-old son, and she's worried about what will happen to him when she and her husband die. 

Kim Cariou said it's frustrating to see programs that house people experiencing homelessness and addiction but nothing for people with developmental disabilities.

"There is no housing," she said. 

"It's not something that I feel comfortable [with], leaving this earth, you know, knowing that he's not going to be taken care of the way that I think he should be."

Cariou believes Kenora needs purpose-built supportive housing for people with developmental disabilities that provides common areas for social interaction and 24-hour assistance to those who need help with daily living. 

98 people on a waitlist

But she feels that officials with Development Services Ontario (DSO) and the Kenora Association for Community Living (KACL) – which supports people with developmental disabilities and those living with mental health needs – point her toward solutions that she said are unrealistic, such as purchasing a house for her son so that support staff can provide services to him there or entering a so-called life-sharing arrangement in which someone connected to the family lives with her son and receives financial support from the government to provide for him.

"I know a lot of wonderful families out there that do life sharing, and they're great. But what about the portion that aren't so great?" Cariou asked. "It's like a foster care system for developmental disorders."

The CEO of the KACL said the organization is not a housing provider, but it has taken an active role in helping clients find homes since approximately 2016 – when more people began presenting to the organization with complex needs.

Its goal is to ensure all clients receive their preferred form of housing, Deborah Everley said. But there are currently 98 people with developmental disabilities in Kenora alone who are on the waitlist for support to help them live in the community – and they could wait 10 years for the type of accommodation they need. 

Given that, KACL brings families together to talk about possible solutions in the meantime – including pooling funding from the Passport program, which gives individual families money for services, Everley said. 

"Would we have enough to create something where we would feel comfortable if our young adults live there?" she said.

Life sharing is the most popular program in the Kenora area, Everley said, with around 41 families currently participating, but it's not for everyone. 

The organization is working with the Kenora District Services Board (KDSB) to create the kind of purpose-built housing that would provide for Cariou's son, she said, but a recent application to the Federal Rapid Housing Initiative was rejected. 

The chief administrative officer of the KDSB said Cariou is correct about the housing shortage.

Henry Wall said it's unclear exactly who is responsible for funding new housing for people with developmental disabilities, but the province needs to make it a priority. 

Currently, KDSB receives funding to operate existing social housing facilities and to provide subsidies so that people on the Ontario Disability Support Program can afford their rent, but it's hard to access capital funding for new, purpose-built housing, he said. 

'we're filling a gap but don't really have the resources'

"It's very often organizations like Kenora Association for Community Living and the KDSB –  we're filling a gap but don't really have the resources to actually do it," Wall said. 

"It really isn't within the KDSB mandate to build supportive housing. But many of us have realized that, if not us, then who? And we have not liked the answer to that."

The housing system for people with developmental disabilities is extremely fragmented, Wall added. 

"You have the planning for supports and so forth with development services completely separate from the affordable housing, which is separate from assisted living or supportive housing," he said, adding that organizations work together out of necessity.

"It's certainly a sector that is really overlooked," he said, "And it just puts a tremendous amount of pressure on those households and those families, because that housing doesn't exist." 

CBC contacted the provincial Ministry of Children, Community and Social Services (MCCSS) and three other ministries to ask if there were any programs to fund new housing for people with developmental disabilities.

A spokesperson for the social services ministry pointed to a program that helps individuals find existing housing.  She also noted $4 million in last year's budget to renovate existing spaces for people with developmental disabilities.  But she did not point to any funding for new builds. 

A representative of the Canada Mortgage and Housing Corporation (CMHC) told CBC that the National Housing Co-Investment Fund (NHCF), which requires investment from another level of government, aims to create 2,400 new affordable units for people with developmental disabilities by 2027-28 and has currently funded around 600 nationwide. 

The group Inclusion Canada, formerly the Canadian Association for Community Living, estimates that over 100,000 Canadians with intellectual and developmental disabilities currently live in precarious and vulnerable housing situations, according to its website. They include people who are homeless; people living with aging parents who can no longer manage but who are too poor to live more independently; and people living in nursing homes and long-term care facilities because they are unable to access affordable and supportive housing in the community.

The CMHC also pointed to several other programs that could be used to fund housing for people with developmental disabilities, including the Affordable Housing Innovation Fund and the Federal Lands Initiative, under which surplus federal land and buildings can be transferred to organizations to create affordable housing. 

In addition, a staff member for Thunder Bay-Superior North MP Patty Hajdu noted that the new federal budget, released on Thursday, includes a new tax credit of up to $7,500 for individuals who build secondary suites for seniors or people with disabilities.