B.C. would do wise to follow Alberta’s ‘moral’ decision

Thursday, May 22, 2008

Several years ago, while attending a support-group meeting for families dealing with autism, I met a couple who had given their child up to the government.

The youngster was living hundreds of miles from the family home and these two incredible selfless parents made the trip as often as they could to visit their child.

They loved their child deeply and unconditionally — and knew the only way their child could be assured of receiving help from the provincial government to deal with his autism would be in foster care.

Imagine the courage that decision took. It’s beyond heart-breaking.

It’s incomprehensible.

Consider now the case of Suzana and Jeff Pekrul, who have made the equally tough decision to keep their severely disabled child, providing round-the-clock care for a youngster who can’t walk, talk or even breathe normally.

She’s the victim of severe microcephaly, which means her brain never developed the way it should have.

A government-paid helper is there during the day while Suzana is at her full-time job and Jeff is functioning on very little sleep, having worked a 10-hour night shift, going to sleep at about 2 a.m. and up again at 6 a.m. so his wife can leave.

All they wanted was what Community Living B.C. (CLBC) advertises on its website, to take advantage of the At Home Program providing respite care.

Of course, of the 14 sentences describing the program, there are two that are key: “Respite funding may not be available immediately. Families may be waitlisted for benefits.”

The Pekruls were approved for respite, giving them one night a week when they could try to relax, interact as husband and wife, perhaps visit with friends — do all those things the rest of us take for granted.

However, as all mothers know, leaving your ailing child at home with someone else is one of those decisions that floats in front of you throughout the “night of relaxation.”

Two months after being approved, however, the B.C. couple was put back on the waitlist, told there isn’t enough money in the budget for them.

The head of CLBC won’t discuss the Pekruls’ case specifically, but Rick Mowles did admit he knows his agency is not providing services to everyone who needs them, but he believes most parents are getting the respite they need.

Look next at the province to the east of us, and the way that government has responded to the needs of the Pare family.

Son Trevor Pare, one of only 13 in Canada born with a rare progressive neuromuscular disease, needs a unique drug he has been taking for four years as part of its manufacturer’s trials.

The trial — and the supply of the drug — was to end this month, leaving the Pare family facing an annual $775,000 cost to keep their son treated.

The provincial government has stepped up and will ensure Blue Cross will cover the drug’s cost.

Alberta’s health minister, Ron Liepert, explained the decision in words his counterparts in B.C. would be wise to listen to:

“It’s a very difficult decision because there are significant financial impacts to the health-care system.

“However, at the end of the day, this does not come down to a business-case decision.

“It comes down to a moral decision.”

His government is in the process of developing a policy to help all Albertans who require expensive drugs for rare disorders, Liepert said, something the Canadian Organization for Rare Disorders is calling for on a national basis.

Somehow, it doesn’t seem right that parents who choose the hard road of caring for their children, no matter what the diagnosis, have to go through so much hardship just to get what the government naturally provides for children in its wardship.

And, while stories like those of the Pekruls and the Pares are the kind reporters love to grab hold of and run with, it would be such a better world if parents didn’t have to bare their souls — and their families’ stories — to the media just to get some help.

dale@kamloopsthisweek.com