Yellowknife mother fighting for supported living help

Shawnette MacNeil is fighting for her son to get the help he needs in Yellowknife but says there are gaps in supported living services in the territory.

“I’m frustrated and I’m angry,” she told Cabin Radio. “We made a commitment to these children and I’m going to see it through.”

MacNeil and her husband have adopted three of the nearly 90 children they fostered over 14 years.

Her 24-year-old son has fetal alcohol spectrum disorder, or FASD, and is unable to work or live on his own.

MacNeil said her son needs mental health treatment that is not currently available in the territory. While the NWT government has proposed sending him to live at a supported living facility in Edmonton, MacNeil and her son want him to stay at his family home in the North while getting the help he needs.

“They want to send him away to a place where he has no support, no family, no love, no anything, and they are OK with spending all that money, but they’re not OK with keeping him here,” she said.

“If something happens, I’m too far away to get there fast enough to help and it’s scary for me, too. I feel like I’m failing because I can’t get him what he needs where he lives.”

Despite facing road blocks, MacNeil said she’s not giving up. She is working to have her home considered a supported living home and is advocating for more mental health supports in the NWT.

More broadly, MacNeil wants the NWT government to better support people with disabilities to stay in the North and make it easier to access services.

“I don’t want somebody else to go through this,” she said.

‘It breaks my heart’

Range Lake MLA Kieron Testart, who has been working to help MacNeil, said having her home designated as a supported living facility could unlock funding. He said a “sticking point” seems to be that such facilities are run by organizations rather than private homes.

Testart pointed out the capacity of local service providers is limited. He argued providing resources to keep people with developmental disabilities at home with their families makes more sense, and is less expensive, than sending people south. He noted many people in care are Indigenous and should not be sent away from their culture, home and families.

“Communities are our strongest resource and it’s time we invested in those resources,” he said.

According to the Department of Health and Social Services, there are supported living facilities in Yellowknife, Hay River and Inuvik. The department said private residences are not designated as supported living facilities but services may be delivered to individuals living in their own homes.

The department said respite supports for caregivers are offered in several communities by the NWT Disabilities Council and Inclusion NWT, while the disabilities council also provides system navigation services. Adult service workers are available in all regions of the territory.

Outside the NWT, the territorial government has contracts with service providers in BC, Alberta and Saskatchewan.

Representatives of Inclusion NWT told a committee of MLAs in July that its funding from the territory has not changed since 2018 and is not keeping up with inflation, nor the needs of clients.

The organization said it particularly needs funding for its supported living program, which allows people with disabilities to live independently in the North. Representatives also highlighted long waitlists for respite care.

Testart said he believes the lack of supports in the territory is affecting many families.

“It breaks my heart when a constituent comes to me and says, ‘I cannot support the child that I’ve been caring for their entire life, and there’s nothing for me to do but hand them over to the state to be warehoused in the south,'” he said.

“That’s unacceptable and lacks the kind of compassion any government should have towards its most vulnerable citizens.”

2022 report found service gaps

A supported living review released by the NWT government in September 2022 found limited in-territory service options in community settings, including the use of alternate family home settings.

The review also highlighted gaps in capacity in the NWT to meet the needs of people, particularly those with complex and aggressive behaviours.

The review report states of the 182 NWT residents using supported living services at the time, the majority were accessing services outside the territory. The total annual cost of services was approximately $38 million, the report said, with about $30 million attributed to out-of-territory costs.

Public engagement revealed that most people wanted to receive services in their home.

The Department of Health and Social Services told Cabin Radio there are currently 189 residents using supported living services, 139 of whom are receiving services outside the territory.

Out-of-territory supported living placements are generally more expensive on a per-person basis, the department said, as individuals using those services tend to have more complex needs and require more support services.

The review included 33 recommendations to address gaps in supported living, including expanding in-territory services and enhancing behavioural support in the NWT.

The territory accepted 12 recommendations that it said could move forward using existing resources, adding it accepted the 21 remaining recommendations “in principle.”

The GNWT said eight recommendations have been completed to date and 10 are in progress.

The health department highlighted changes to streamline the admissions process, improvements to website information, strengthening the oversight and monitoring of services, and improving communication and coordination between health authorities.

The department said it is “working towards expanding supportive living and respite services in-territory,” and is developing supported living standards.