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I Don’t Want to Die Without Finding Housing for My Daughter

Aging parents and their adult children with intellectual and developmental disabilities fight for scarce subsidized rentals.

Andrew MacLeod 6 Dec 2022TheTyee.ca

Andrew MacLeod is The Tyee's Legislative Bureau Chief in Victoria and the author of All Together Healthy (Douglas & McIntyre, 2018). Find him on Twitter or reach him at .

At 45, Mark is waiting nervously to find out if he’ll be able to move out of his parents’ basement and into a subsidized housing building that’s opening soon in Ladysmith.

“I want to be independent, away from my parents,” said Mark, who asked that The Tyee not use his last name since some past discussions of the housing project on social media have turned nasty.

Seven years ago, when people in the community were first proposing the Heart on the Hill building, they intended that it would fill a gap — providing housing for adults in the area like Mark who have intellectual and/or developmental disabilities.

But with the organization that owns and manages the BC Housing subsidized building expected to open in the next few months, the Ladysmith Resources Centre Association, close to choosing and welcoming tenants, it is unclear who will get to move in.

“The resource centre has been telling us absolutely nothing,” Mark said.

That’s left him feeling nervous and scared about the decision and worried about where he’ll live in future.

The Heart on the Hill building is desperately needed and the units have to be affordable for people supported with provincial disability assistance payments, said Mark, who lived in a similar building in Kimberley, B.C., for 10 years, and loved the friendships he made there and the feeling of community that developed.

“There’s lots of disabled people out there and they don’t have housing,” he said.

As a condition of the funding from BC Housing, the LRCA is supposed to give priority for the 36 units to people with disabilities, but also to families and seniors.

As in many other B.C. communities struggling to address the provincial housing crisis, demand for the coming housing far outstrips what is available. The stiff competition for the apartments is generating tensions in the small town.

“It’s been a battle,” said Mark’s father Stan. “The atmosphere here in Ladysmith has been poisoned.”

A human rights complaint against BC Housing aimed at securing more of the units for adults with intellectual and/or developmental disabilities failed to come to a mediated settlement in September after it was decided the LRCA should also be included. The complaint also names the Ministry of Social Development and Poverty Reduction.

The human rights process will continue, but is unlikely to reach a conclusion before tenants move into the building.

The lead on the project for the LRCA has been outgoing board president Vicky Stickwood-Hislop. She did not respond to phone or email messages from The Tyee.

On Nov. 21 members participating in an LRCA annual general meeting elected a new president and Stickwood-Hislop remains on the board as past president. The LRCA’s announcement thanked her “for serving as president of the board during one of the association's most time-consuming and challenging years.”

The four-storey Heart on the Hill building includes a mix of studio, one- and two-bedroom homes intended for people with moderate and low incomes, according to the province’s 2021 announcement of the project. The province’s contribution is about $3.8 million for the building and an annual commitment of $227,000 for operating funds.

Under the requirements of the funding, half of the units are to be “rent-geared-to-income,” where tenants pay 30 per cent of their gross monthly income in rent, and seven are to be offered at a “deep subsidy rate” to people who receive provincial income assistance benefits.

The rest of the units, about one-third of the building, are to be provided “at or near market rent.”

Sandra Marquis, whose 37-year-old daughter Camille is hoping to move into the new building, is a post-doctoral fellow in the University of British Columbia’s school of nursing where she researches the health of people with disabilities and their families. She also teaches disability studies at the University of Victoria.

On Nov. 21 LRCA members elected her as the new president of the board.

Marquis was among the group of parents who some seven years ago realized that housing for their adult children was going to be an issue and got the project rolling.

They lined up the LRCA as a partner and put forward proposals to BC Housing in 2016 and 2018, she said in an interview conducted before she’d considered seeking the board presidency. The first was rejected, but after the group secured a piece of property for the building, the second won approval.

The proposals were very clear that the intent was to give priority to providing housing for people with intellectual and/or developmental disabilities, Marquis said, adding that BC Housing funding should still allow communities to set their own priorities.

The group believes that 12 of the 36 units should be dedicated to people with intellectual and/or developmental disabilities. To make that work, they want them to have priority for six of the deep-subsidy units and six more of the rent-geared-to-income units.

The rent-geared-to-income units would need to have rents under $500 per month to be affordable for people receiving disability assistance from the province, they’ve argued.

People with intellectual and/or developmental disabilities are not likely to be able to afford the units with rents at or near the market rate, Marquis said, noting that in Ladysmith that means about $1,100 per month, which is out of reach for people dependent on provincial disability benefits for their income.

An individual receiving disability assistance gets $375 a month for shelter, plus $983.50 to cover everything else.

People receiving assistance may also earn up to $15,000 a year without having their disability payments reduced, though few make anything near the maximum earnings exemption. In Mark’s case, for example, he earns about $500 a month working part time at a pharmacy.

The only units people with intellectual and/or developmental disabilities are likely to be able to afford are the ones offered at the deep subsidy, Marquis said.

“The competition for those units is fierce because low-income seniors, other people on social assistance… all want those units,” she said. “And I don’t blame them, but the plan always was that those units were prioritized for people with developmental disabilities.”

Even in situations where people on disability assistance have some earned income and could afford to pay more than $375 for rent, Marquis said, BC Housing has refused to allow them to apply for any of the units except those offered at the deep subsidy rate.

“This is not only a human rights issue it is a disincentive for people on PWD [person with disabilities] to earn income,” she said in an email.

A spokesperson for BC Housing said in an emailed response to questions that people receiving disability assistance “are not restricted to applying for a specific type of unit and may be considered for any vacancy.”

It is up to the housing provider to select the tenants, they said. Some housing programs are designed so that the buildings include people with a mix of incomes, the spokesperson noted.

“Individuals living with disabilities who meet all the income and eligibility requirements are one of the target populations of projects such as Heart on the Hill.”

They said that BC Housing also provides rental subsidies to help people receiving disability assistance afford rents in the private market.

“There is an ongoing housing crisis in British Columbia, and BC Housing acknowledges that access to housing, homelessness and poverty are all issues which disproportionately affect people living with a disability.”

Chelsa Meadus, a former Maple Ridge city councillor who still sits on the city’s affordable housing committee, said part of the issue is with how BC Housing defines “affordable.” While new buildings like one that was recently built in her community do add new units to what’s available for rent, they remain out of reach for people who most need the help, Meadus said.

“None of the people who really need affordable housing can afford to live in this building,” she said. “What about the senior citizen that’s making $1,500 a month? Where do they fall into all of this? I feel we’re missing the mark.”

The tensions over the Ladysmith project speak to the need for more housing designed for people with disabilities, said BC Green Party Leader and Cowichan Valley MLA Sonia Furstenau.

“This is a perfect example of the scarcity of housing for people with disabilities, people on low incomes and the fact there are far more people in need of that housing than there are units available,” she said.

Instead of setting aside a small number of units, she said, Premier David Eby needs to direct BC Housing to make sure there is purpose-built non-market housing available that’s designed in a way that recognizes people’s varying needs.

“We need to recognize there is insufficient housing for people with disabilities where we’re at right now and that the kind of housing that’s available often doesn’t meet the needs of people with disabilities,” she said in a news conference on Nov. 23, during which she also called on the government to raise disability assistance rates.

W. Jeff Leggat, a disability advocate who appeared at the event with Furstenau, said that about 74 per cent of the 107,000 people in the province who have disabilities don’t have access to subsidized housing because it’s unavailable to them.

“I’ve been on the waiting list for housing registry since February 2019,” Leggat said, adding that he re-registers every six months and is yet to be offered a place, despite being willing to move anywhere on southern Vancouver Island.

“I’ve been having to pay market rent this entire time based on limited disability support,” Leggat said.

On Nov. 21, Eby, who was sworn in as premier just three days earlier and who ran for the NDP leadership promising various housing fixes, announced two bills aimed at increasing the supply of housing in the private sector.

Marquis said she understands there are many groups of people who need help with housing, but noted that for seniors, there are three other subsidized housing projects in Ladysmith.

“There’s no other subsidized housing projects for people with developmental disabilities in Ladysmith. This is it.”

A study from the Crown corporation Community Living BC and the advocacy group Inclusion BC, "A Report on Inclusive Housing Needs in BC 2020," found that there was significant demand for housing for people with developmental disabilities and that some 5,000 would “need and will want” to move into new housing situations within the next five years.

Marquis knows well how difficult it is to find suitable housing. Ten years ago, her daughter Camille moved into a Home Sharing arrangement, a program through CLBC where a provider is paid a monthly fee to share their home with a person with a disability. There are around 4,200 people living in 4,000 shared homes across the province.

“For the first few years it worked fine,” Marquis said.

As time went on, however, the arrangement proved unstable. Over a 10-year period, Camille moved nine times. During those years she was in homes provided by five different people.

“That just doesn’t work,” Marquis said. “Home share’s just not a sustainable long-term solution for people with developmental disabilities.”

While it works for some, for awhile, she said, it doesn’t work for the majority and the average arrangement lasts about two years.

In Marquis’s observation, Home Sharing is an intense, time-consuming, poorly paid job. People go in with good intentions and good hearts, but are exhausted after a short period, she said.

And for people like her daughter, the living situation can feel precarious.

“It’s just too hard on them to not have a permanent place to call their home and to always be wondering when they’re going to have to move again,” Marquis said.

Understandably, Home Sharing providers get respite so they have a break, but in many cases that can mean adults like Camille going back to their parents’ homes, sometimes far from where their home and community are.

“It’s like asking somebody in their 20s to go home to their parents every second weekend and give up all their activities,” said Marquis. “That’s just really hard for people who are in home share.”

The Heart on the Hill project got started because she and other parents, many of whom are in their 60s and 70s, were trying to be proactive and make plans so their adult children have safe and secure housing after they’re gone, she said.

“My daughter’s moved nine times in 10 years and I don’t want to leave this Earth with that happening, so it’s very frightening,” Marquis said.

Mark’s father Stan, a retired teacher, said many of the parents are concerned that with nobody to look out for their adult children, they will be at high risk of becoming homeless.

“What we are looking for is having accommodation for our developmentally disabled sons and daughters that’s affordable, that’s safe, obviously, and that’s long-term,” he said.

In Ladysmith it’s been difficult to get reliable information from the LRCA, BC Housing or the provincial government, said Mark.  [Tyee]

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