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SOMBA K'E/YELLOWKNIFE - James Boylan says his middle-class family with its modest household income will have to pack up and leave if changes to health benefits come into effect April 1.

Candice Keenan Boylan, 32, and James Boylan, 35, with their three-and-a-half year old son Jonas. With new changes to supplementary health benefits coming April 1, the Boylans say they will face astronomical medical costs reaching $20,000 each year. They say if changes to the benefits go through, they will have to move out of the NWT. - Andrew Livingstone/NNSL photo

Due to the changes to health benefits offered to non-aboriginal NWT residents, Boylan will be looking at an average cost of $20,000 a year to cover the medical costs for his severely disabled son.

"There is no question about it, we're going to have to move," he said. "We just can't afford to cover the costs of Jonas' medical needs."

Jonas is three and a half years old. He has cerebral palsy, scoliosis of the spine and a severe seizure problem, experiencing anywhere from four to 40 a day. Jonas is also a quadriplegic, legally blind and has to be fed through a tube in his stomach.

"His food costs are over $1,000 a month," Boylan said. "He's fed through a tube that goes directly into his stomach. It is a specific liquid, a nutritional supplement he needs. Because of how much I make we won't be covered under the new plan."

Boylan, 35, works two jobs and said his household net income is approximately $80,000 annually, far above the $45,000 income test limit for a family of four or more to be eligible for coverage under the new Supplementary Health Benefits Program.

Boylan's wife, Candice Keenan Boylan, said they found out about the changes to their health coverage when James went to get food and medication for Jonas one day. The couple also has a young daughter named Annabella, age 5.

"The pharmacist gave him a letter addressed to us," she said.

"We were told we had to fill out forms now to get what we needed. They just sprang these changes on everyone."

Candice said they have spent a lot of time travelling to Edmonton for surgeries since Jonas was diagnosed in 2005, five weeks after his birth.

She said she spent almost three months in Edmonton, starting just before Christmas in 2007, returning to Yellowknife in February after about eight weeks at the Stollery Children's Hospital.

"Jonas' stomach was kept open for two weeks after he got an infection from the button that goes into his stomach was put in wrong," she said. "The food fed through the button went all around his stomach."

"My daughter was in Yellowknife with James and her daycare told me she was on a hunger strike so she could go to Edmonton to get a tube in her stomach just so she could see her mommy.

"This whole change is going to affect our lives more than we ever imagined."

Janice Bushfield, executive director for the Cerebral Palsy Association of Alberta, said Albertan families like the Boylans are covered under the Alberta Family Support for Children with Disabilities Act, which offers full support for families who have children with disabilities. She also said Alberta Health Care covers everyone no matter what the situation.

"It's really no different for a child with a disability compared to a child without a disability," she said.

Jonas currently qualifies for the NWT's Extended Benefits for Specified Diseases. The program covers all costs associated with cerebral palsy and scoliosis but that won't be the case April 1.

"It's just completely unfair," said Boylan.

"They can't do this. I've lived here for 15 years and my wife was born here. We planned to raise our two kids here and had no intention of leaving.

"We can go south and be better covered. It's boggling to the mind that this is going to be brought into effect."

Azure Degrow also faces a tough decision with regards to the supplementary benefits program.

Degrow receives monthly treatments for Crohn's, an inflammatory disease of the digestive system. The cost of her treatments is approximately $6,000 to $8,000 monthly, currently covered under the Extended Benefits for Specified Diseases, the same program under which Jonas is covered.

Due to her income, Degrow will be forced to pay the minimum out-of-pocket payment of $3,000 a year through the Catastrophic Drug Benefits program which is offered in part with NWT extended health benefits program for her to continue to receive the intravenous treatment.

"The North is my home," she said. "I grew up here. I work here. I pay my taxes. It's my home.

"If they start making me cover some of this medication, I'm going to be forced to move."

Degrow said with the treatments she is able to live a normal life, but with this policy change she might not be able to afford the treatments. This would force her to go back to a way of life she doesn't want to live again.

"Before this medication, I couldn't work. I was in pain," she said. "I had surgeries I don't need any more. What I'm looking at after this, if the medication is gone, is the health department covering my costs for disability. They'll have to pay for my surgeries, frequent hospital stays and any other medications that don't work as well. It's really not cos-effective by taking that money away."

Degrow, who is in her early 30s, is employed full-time but said she doesn't make enough money to just have $3,000 lying around to cover her medical costs.

"I don't know a lot of people my age who can afford that," Degrow said.

Helping people is important, she said, but the way the government has approached changes to the policy is going to cause more problems than it is going to fix.

The supplementary program costs the government around $7 million a year.

"Nothing good comes out of this," she said. "If the money goes to people who can't afford it now, that's all great, but do they outweigh those who are being affected? I don't lead a lavish lifestyle. I pay rent, and cover my truck. It's not like I'm rich and bugged because I have to spend so much money.

"You're not just taking a little money from us, you're changing our lives. It's a huge difference."

Degrow is upset at how Health Minister Sandy Lee has downplayed the issue in her remarks in a story on a local media news website, in which Lee was quoted as saying, "We're talking about something that's near and dear to people's heart," and, "It's about asking some people to pay for things that they never had to, so it's been a shock to the system in many different ways."

"I found that insulting and degrading," Degrow said.

"She's saying this as though I'm pissed I have to pay a little money. It's not like you're upping the cost of parking. It's my life. It's the quality of life I am living. She's acting as though it's no big deal and she's belittling us.

"It makes me lose faith in this government because I don't think they're thinking things through. I feel that they don't care about the people. They're showing that they don't."