Some Nunavummiut living with disabilities say that more that can be done with regards to access to services.
Yugh Ahuja, 19, who has a rare genetic disease called Duchenne muscular dystrophy (DMD), has faced numerous accessibility challenges in Iqaluit, where he lives. DMD causes the muscles in the body to become increasingly weak over time before they eventually cease function, leading to mobility problems such as those Ahuja experiences every day.
Ahuja faces many challenges if he has to go somewhere alone: some handicap door buttons not working, navigating elevators, being able to access ATM machines and dealing with inadequate ramps that are sometimes put in just to fulfill the requirement.
“Some of the ones that are accessible, the ramps are not manageable,” said Ahuja.
That’s if a building even has a ramp – not all of them do.
Getting consistent home care is another issue Ahuja and his family confront.
“Home care is a major issue, we’ve been battling this for five years,” said Dushyenth Ganesan, Yugh’s father.
“It takes two people to carry him and take him to the washroom, go to bed and all that.”
It’s a challenge when one parent is working or is away to help Yugh out with many things that other people may take for granted.
“Often when I travel or my wife would go somewhere, one person can’t do it and we would ask for home care support, they just don’t have the people,” Ganesan said.
While there has been some home care support available, it has been limited and fleeting.
“For a month they provided it, but on a regular basis to be able to get home care, in terms of helping with transfers to showers and all that, that does not exist in Iqaluit,” Ganesan added.
According to the Department of Health once a request is received for home care services, an assessment will be done by a health professional in order to figure out what level of support is needed and what home care services are most appropriate for each case, based on assessed needs as well as available community resources. .
The department states this falls under the Home and Community Care Program, which provides a variety of services, including homemaking, personal care, nursing care, respite care and rehabilitation.
Mike Stopka, who also lives in Iqaluit, was born blind. He said he would like more general disability services to be a reality, but adds, “I know they aren’t cheap services to implement.
“The disabilities services here are trying with the minimal amount of staff and funding that they get, but for people with blindness and visual impairment there’s really nothing here,” said Stopka.
The Department of Health provides rehabilitation services such as physiotherapy, occupational therapy, speech-language pathology, audiology and community therapy assistants, noting that individuals interested in these services can contact their regional rehabilitation centres and do not need a referral from their doctor. Community therapy assistants offer specific services in Kinngait, Iglulik, Pangnirtung and Rankin Inlet.
Ganesan recognizes that the Government of Nunavut takes an active interest in helping individuals who need significant help, including then-Health Minister George Hickes.
Yugh was going to Algonquin College in Ottawa and needed a boost before school started in September 2019.
“He needed a very specialized power wheelchair and the government provided the funding and arranged for it,” said Ganesan.
Hickes became involved directly when it was discovered there weren’t any aid programs to help acquire that specialized piece of equipment.
“For him to stay in the dorms he needed attendant care services, again they didn’t have a way of paying for that, there was no program but the minister (Hickes) intervened and arranged for that as well.” Ganesan said.
“There are instances where the Government of Nunavut Department of Health receives requests to fund specialized equipment that may not be covered by NIHB (Non Insured Health Benefits),” said a spokesperson from the Department of Health.
It is important to note, the department added, that there are complex cases where individuals do not require ongoing care, “and are, therefore, not health patients; health patients are those who are actively receiving care.”
The department of health works with other departments within the GN according to an individual’s needs to see what programs or funds are available.
Ganesan and his son believe landlords in Iqaluit could also do more to help people with disabilities. It’s often an uphill battle to live an independent life as modifications to help Ahuja, such as lifts to help get in and out of the shower, are often not allowed to be installed, and suites are rarely accessible.
“I think the major problem in this is each disability has its own set of circumstances, implementing a program that can help everybody is challenging,” said Stopka. “Honestly it’s a difficult situation.”