SOMBA K'E/YELLOWKNIFE - Annabella Boylan, 6, puts a protective arm around her brother Jonas, 4, and kisses him on the cheek as their parents talk about health care.

Though only two years younger than Annabelle, Jonas requires constant care. He has frequent seizures and needs to be fed through a tube in his stomach. Jonas is a quadriplegic with cerebral palsy and scoliosis of the spine. He's legally blind and though he can hear, his parents don't know if he knows his own name.

James Boylan with his two children, Annabella, 6, and Jonas, 4. - Elizabeth McMillan/NNSL photo

Jonas' parents Candice Keenan Boylan and James Boylan say their goal is always to make sure he's comfortable; they look forward to the moments when his face lights up into a smile.

Last year, the Boylans were upset when the Department of Health and Social Services announced changes to the extended health benefits program that would cut them off from coverage for Jonas' medical needs. James has been following the department's online information for a revised plan and he says the proposed income-based system won't take into account the highly specific needs of their family.

"I don't see what the difference is between what they had last year and what they have now," he said. James estimates Jonas's care - between medication, the tubes that helps him eat, and the equipment he needs to function - costs between $50,000 and $80,000 per year. His food alone costs approximately $1,500 per month.

James says he has third party medical insurance from work but it doesn't cover these expenses.

Under the current program, all of Jonas' expenses are covered under the extended health benefits program for specified conditions. The Department of Health and Social Services is proposing changing the program so all non-aboriginal Northerners will have access to extended health benefits, regardless of their medical condition. People making more than $30,000 or $50,000 would have to pay a portion of the costs depending on how many children they have.

The Boylan family is already facing some tough decisions as Jonas prepares to enter kindergarten. Not only do other provinces offer full coverage for people with his conditions, many places have specialty schools with programs designed for people with disabilities. Candice is from Yellowknife and James has been here for almost two decades so a decision to move isn't something they're taking lightly.

"Part of the reason we've stayed up here is the wonderful care Jonas has had. If they drastically change things so it'll hurt us financially, there's no point in staying here. Other programs in the country will be better," said Candice. "As a long-time Northerner, it's a slap in the face."

James works two, sometimes three jobs to make ends meet with an annual income of just over $80,000. He said while his family would still be covered under the proposed income thresholds, it wouldn't offer any security for the future.

"It doesn't matter. I might get a raise next year, or the year after that," he said.

He said an income-based system would create a scenario where families are better off making less. He said the family's income will go up in September if Candice is able to start to working part-time when Jonas begins attending kindergarten and he worries that additional money they make would all have to go to medical expenses.

"We do share (the financial burden)," said Candice. "It may not be on his medical bills, but I don't have an income, we can't take a normal family vacation, your whole life is different," she said.

"I'm hoping people who are in situations like ours won't have to face any more burdens than they already are."

When asked about what people who now rely on the extended benefits program for specified conditions would be expected to pay, Dana Heide, assistant deputy minister of Health and Social Services, said there would be a cap.

"They'll still be covered. There's always a backstop. The government will never let you pay more than a line - whether it's $10,000 or $5,000," he said. "You'll never be put into the poor house."

He said where the GNWT planned to draw that line had not been finalized. Heide added that people with specified conditions who aren't covered by third party insurance would benefit from the proposed plan because they would have to pay less for medical expenses unrelated to their specified condition, like eye care.

James Boylan said that doesn't ease his concern.

"Say they have a maximum of a $3,000 (payment), well you're automatically taking $3,000 off my salary," he said.