Iqaluit family fights for treatment for disabled son

KIRSTEN MURPHY

An Iqaluit couple with a severely disabled five-year-old boy says the absence of treatment services in Nunavut is jeopardizing their son’s future.

Paul and Rebecca Salmonson want the government of Nunavut to provide an occupational therapist who specializes in visual impairments for their son, James, who is legally blind, and others like him.

The boy’s name has been changed to protect his identity.

“We’re not just advocating for our son, but for all children. We’ve been writing letters, having conversations and meetings with no success for years. We are at the end of our rope,” Paul said.

“[The government] has knowingly put this child at risk.”

James was born three and a half months premature in 1997. He suffers from blindness, brain damage, digestive difficulties and respiratory problems. Despite his disabilities, the boy takes an active interest in his surroundings and doctors say he’s capable of walking and communicating with specialized therapy.

But James’s current treatment regime, paid for by the GN, may be hindering his progress, his parents say. Travelling to therapy sessions in Montreal every three weeks for two weeks at a time has put undue stress on the child and the family.

“The take-offs and landings are becoming so traumatizing we now go through Ottawa to avoid stopping in Kuujjuaq,” the Salmonsons wrote in a letter to Health Minister Ed Picco on March 8. “We overnight in Ottawa and then travel to Montreal by train.”

James undergoes therapy at the Montreal Association for the Blind, learning life skills in a one-on-one setting. However, his schedule has been reduced because of staffing shortages and his growing needs. Now, he is shuttled between the MAB and La maison de l’enfance, a private clinic.

The Salmonsons praise the quality of service their son receives. However, they say it’s just not enough.

“These services were sufficient when he was a toddler but he’s past the toddler stage. His needs far exceed the services he’s currently receiving,” the letter says.

“[James] is at risk of missing out on future milestones,” Paul added in an interview this week. “He’s going in the wrong direction because he’s not being challenged.”

He has become withdrawn, the couple says, a sign he needs more than the existing therapy he’s receiving.

“Our home is here”

Paul is “Mr. Mom” to James and the couple’s two older sons, aged 8 and 12. Rebecca works as a supervisor with the department of finance.

Relocating to the South, as a long list of health-care professionals have been recommending for years, is an option – but not a desirable one.

“Our home is here,” said Rebecca, who grew up in Pangnirtung. “Why should we leave?”

Unlike the Jaffray family of Kimmirut who went public about their son’s health needs last year, Rebecca and Joshua are beneficiaries under the Nunavut Land Claims Agreement. But if Inuit organizations can help, Rebecca says, she’s not aware of it.

Jackie Simms, the director of Nunavut Tunngavik Inc.’s social and cultural development department, formerly the Nunavut Social Development Council, said she is looking into the issue.

She said the lack of services for beneficiaries with disabilities is a territorial-wide concern.

“It’s hard enough to get basic physiotherapy and speech therapy in Iqaluit, never mind the smaller communities,” she said.

“It’s something that’s been brought to my attention more than once.”

Bill McKeown, executive director of the Canadian National Institute for the Blind’s Alberta, Northwest Territories and Nunavut division, says Nunavut is the only region of Canada without representation.

McKeown wrote a letter to the GN health department requesting the two parties partner up, but the answer was a disappointing no.

“The response was there’s no money but there’s definitely a need for our services up there,” McKewon said.

The CNIB offers skills training, books on tape, therapy and equipment to anyone with a registered visual impairment.

The Nunavut Council of People with Disabilities – a lobby group for disabled people – folded in 2000 due to lack of funds.

The Kakivak Association funds work placements for disabled people, however, the program is designed for adults and does not meet the needs of the Salmonson family, said project officer Hanna Kilabuk.

Last resort

In June 2002, the Salmonsons met with Dr. Keith Best, acting deputy health minister for the GN. The couple says Best agreed to look into hiring a specialized OT.

Three months later, they still haven’t heard from him. Going public with their story is their last resort.

“Our hopes have been up and crushed so many times. It’s to the point where we’re sick of the bureaucracy. No one seems to have the authority to do anything. We can’t wait anymore,” Paul said.

“This child can’t wait anymore.”

Best said the Salmonsons request is being considered within the context of other families’ needs.

“This is a priority for us. We’re looking at a program that will address as a whole these kinds of difficulties, concerns and needs family members are bringing to us,” Best said. “If the program dictates the need for an OT, then that’s the direction we’ll move in.”

But that’s not the only problem the family faces. The Salmonsons want their son to start school one day.

While educational services for disabled children exist in Nunavut, given James’s medical needs, the Salmonsons doubt a school support worker would be able to manage their son’s sometimes challenging behavior.

“He’s not just blind, he’s developmentally delayed. But in the right environment he as the potential to excel,” Paul said.

The couple has vowed to keep fighting for their youngest son.

“We don’t want pity. We don’t want sympathy,” Paul said.

“We want action.”