Another try at helping long-neglected disabled

A new territorial task force on disabilities is the latest group to work on finding ways of helping the many Nunavut residents who struggle with mental or physical disabilities.

But 25 years after the first efforts aimed at organizing services for the disabled in the Eastern Arctic, after countless conferences, meetings and reports, many disabled Nunavummiut still struggle to survive and suffer in silence from poverty and neglect.

“Do we feel ashamed because we don’t get help?” said Amme Kipsigak, a Rankin Inlet man with several physical disabilities and a member of the new task force. “It’s hard to talk about it.”

As many as one out of three Nunavummiut live with a mental or physical disability.

Kipsigak, who has a hearing impairment, sometimes has trouble hearing discussions at these kinds of meetings. He said he doesn’t have the physical strength to push a snowmobile, either — but he’s luckier than many other disabled people, because he is mobile and employed.

Some people with physical disabilities lie in bed for hours because they lack the help they need to get up. Others are house-bound and can’t visit family or friends because their houses are not accessible to wheelchairs.

Communities — including the relatively well-equipped city of Iqaluit — can’t provide the special services and health care that those with disabilities require, such as physiotherapy, occupational therapy and home care.

Many disabled adults and children are still living outside of Nunavut because the care or treatment they need isn’t available in the territory.

Physical rehabilitation services in Iqaluit are “just being developed,” according to the GN’s rehab coordinator.

Although there was a full-time audiologist, or hearing specialist, at one time for the Baffin region, for the past six months there has been none, even though the most common disabilities in Baffin are deafness or hearing impairment.

The weight of care falls usually on family members, who like Lizzie Mary Arnakak of Pangnirtung, try to look after disabled family members. In her case, these include an 80-year old mother who is a double amputee and who requires daily medical treatment, as well as a husband who is confined to a wheelchair.

“You can’t get any help. It’s as hard as a rock for most of us who look after people with disabilities,” she told the task force.

To deal with the needs of its disabled population, the task force wants to pick up the pieces of Nunavut’s short-lived council for the disabled ,and come up with a plan that’s actually carried through.

In 1999, with much fanfare, the GN’s Department of Culture, Language, Elders and Youth gave $90,000 to a Nunavut Council of People with Disabilities.

This council crumbled after its executive director Meeka Kilabuk left to head the Qikiqtani Inuit Association. The council was unable to renew its funding, because no accounting was ever made on how the money had been spent.

Since then, responsibility for Nunavut’s disabled has been shuffled around the GN from CLEY to the education department, and just recently to Health and Social Services.

Nunavut Tunngavik’s board decided to take the lead in tackling Nunavut’s disabilities file. In its last budget, NTI set aside $100,000 for the needs of disabled beneficiaries. Half of this was divided equally among the communities for local projects. The rest has been used to hire two NTI employees to work on the file and organize the task force.

The task force meeting in Iqaluit this week was intended as the “first step” in addressing the needs of Nunavut’s disabled population, said Pat Angnakak, the director of NTI’s social and cultural development department.

“We don’t even know exactly how many disabled there are in Nunavut,” said NTI’s Virginia Lloyd, who has been in touch with each of the communities to gather information.

With no precise statistics on the disabled in the territory, little information on their needs and no real idea of who does what for them, Lloyd said it’s impossible to develop programs and services.

The last federal census of people “with limitations” was taken a couple of years ago, but it did not include Nunavut. As a result, it’s not clear who in Nunavut is disabled and why, how old they are, or where they live.

NTI wants to lobby for disabled Nunavummiut, working with regional organizations and government, to receive more assistance.

“We have to find a way to improve the help for disabled. No one wants to be disabled,” said Davidee Arnakak of Pangnirtung. Arnakak is a long-time spokesperson for disabled Inuit.

What quickly became apparent at this week’s task force meeting is how little the disabled now receive.

Only those who receive income support are eligible for a $135 monthly supplement. Those who are in the work force, like Kipsigak from Rankin Inlet, have to make do on their incomes for the extra care or supplies they need.

“There is a huge cost of having a disability,” said Lydia Bardak, a consultant from Yellowknife who chaired the task force meeting.

There’s a growing realization that income security and disability assistance shouldn’t be linked, Bardak said.

Meanwhile, $750,000 of federal money earmarked every year for a program that helps those with disabilities enter the workforce or pays to adapt their workplace sits somewhere within the coffers of the Nunavut government.

“Right now, there’s no plan in place [to access this money],” said Sandy Teiman of the Department of Education.

The GN doesn’t have an overall plan to deal with residents who have disabilities.

Joanne Bezzubetz, the executive director of health and social services for the Qikiqtani region, who spoke to the task force by telephone from Pangnirtung, said her department’s plan is to bring care “closer to home.”

But Bardak cautioned this might lead to the kind of situation that developed in the South after mentally ill and disabled residents were taken out of the institutions as a way of normalizing their lives.

The money attached to their care never made it back to the communities that were suddenly charged with looking after them. As a result, many ended up on the street.

By the end of its meeting, due to wind up after Nunatsiaq News press-time, the task force was to develop a plan that includes a relaunch of the council for disabled persons.