In October 2020, Amittuq MLA Joelie Kaernerk rose in the House to speak with concern over his constituents and other Nunavummiut living with disabilities who are not being supported by their government.

At the time, Government of Nunavut funding for the Nunavummi Disabilities Makinnasuaqtiit Society (NDMS), which assists those with disabilities, remained static at $100,000, though Kaernerk asserted it should be increased, and colleagues in the House supported the idea.

Kaernerk added that capital projects in Nunavut’s communities should take into consideration people with special needs, noting they lack paved roads and concrete sidewalks that are found in southern centres.

Two years later, things haven’t changed much, likely largely due to the disruption caused by the pandemic – the threat of which would have disproportionately affected those with disabilities to begin with – and many of those living with special needs are still left to fend for themselves and advocate for their needs to so many deaf ears.

The base funding amount for NDMS remained the same in 2021-22. However, the organization received $453,676 in 2020-‘21 for training and work experience for people with disabilities and $132,250 for job coaching and mentorship.

In Iqaluit, which is more accessible than many of the smaller communities, it can still be a struggle for residents to find programs and grants to help accommodate them.

The Department of Health stated in a December 2020 interview that the Home and Community Care Program provides a variety of services, including homemaking, personal care, nursing care, respite care and rehabilitation.

NDMS is teaming up with the newly-established Canadian Centre for Caregiving Excellence (CCCE) to map out Nunavut’s home and family caregiving needs, something CCCE executive director Liv Mendelsohn says there is very little existing data on.

Nunavut News spoke with Yugh Ahuja – a young man living with a degenerative muscle disease which necessitates use of a wheelchair – and his family in Iqaluit in December 2020. One of their biggest concerns was getting consistent home care, which Ahuja’s father said had been a more than five-year battle, even for something as simple as arranging respite care for an evening.

CCCE and NDMS hope to illuminate the state of home caregiver needs in the territory to highlight existing gaps and hopefully set the groundwork for getting more programs and supports up and running for those who need caregivers, such those with disabilities and Elders.

“(NDMS’s) ultimate goal is to support individuals who have disabilities to live their own lives the way the want to live their lives, to support inclusion and accessibility in all aspects of life, whether that means remaining in their home community and providing capacity-building for families,” says Nicole Diakite, executive director at NDMS.

With that goal in mind, they’ll be visiting all 25 communities for consultations over the next few years, using an Indigenous research methodology created in Nunavut by Qaujigiartiit Health Research Centre, with input from community members and Elders. The project begins in June and the research portion will hopefully be completed by April 2024.

“There’s really no academic literature or body of knowledge about caregiving or disabilities in Nunavut. It’s a significant gap that we’ve encountered since opening in 1999,” said Diakite.

This may be just the beginning of addressing these significant gaps, but it’s promising work. Like Diakite and Mendelsohn, we’re excited to see how this research can improve the lives of many Nunavummiut and their families.

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