Flaws in N.B.'s new autism therapy system, say parents

The CBC is voicing the concerns of some parents in New Brunswick about the agency system in place for the provision of pre-school autism services. Hopefully, the concerns of the parents will be addressed. I disagree, however, with parent Cindy Havens who feels that families would be better off without the agencies.

Prior to the agencies there was a mess of service providers who were being paid to offer pre-school intervention for autistic children, there were no standards and no accountability. The agency system was introduced to address these issues and it has resulted in some great improvements, particularly in Fredericton. The province itself has provided audit information and has highlighted areas which need improvement.

The biggest problem pointed out by the parents is the fact that hours are eaten up on non-therapy time and counted toward the 20 hours for which funding is supplied, at least in the Moncton area where the parents quoted reside. The abolition of agencies though would likely result in more hours being eaten by non-therapy purposes as therapists would have to travel to homes to provide therapy instead of having the families come to agency offices to receive treatment. And it would be more difficult to maintain standards and conduct audits of services.

The parents have provided a valuable service by bringing their information forward. The solutions lie though in improving the agency system, not abolishing it. That could also include providing for more agencies as I know of at least one instance where an established therapist was "grandfathered" under the new agency system but was not permitted to continue to accept clients. Improve the agency system do not dismantle it. Not all of New Brunswick's autistic children prospered under the pre-agency system.

Flaws in N.B.'s new autism therapy system, say parents

Last Updated: Monday, December 10, 2007 | 9:24 AM AT

CBC News

Some parents of autistic children say their experience over the last 18 months with New Brunswick's latest therapy program has left them longing for a time when they were in charge of finding therapy for their kids and the government just paid the bill.

"It might have had its flaws, but it worked better for him [her son], and he made way more progress," said Cindy Havens, mother of two autistic children.

In Ontario parents have a choice between going to a government-run clinic or managing their own program, Havens said.

"And you know what? If you have the ability of choice, I think it makes a lot more people stand up and be more accountable, as opposed to have a monopoly."

A year and a half ago, the New Brunswick government signed contracts with seven privately run, community-based agencies to provide autism therapy to children five years old and younger.

Havens said she has observed a lot of problems with the new agency system, including a shortage of trained support workers and children not getting their 20 hours of therapy a week.

Another parent, Darryl Nowlan, said his child often doesn't get the full 20 hours of applied behaviour analysis each week.

Parents' meetings with the workers, paperwork, workers being off sick and training all take hours of therapy away each week, Nowlan said.

Some employees do paperwork on their own time so kids don't miss out on their hours, said Danielle Pelletier, program director at Autism Intervention Services in Fredericton. But a lack of clarity in the guidelines on the hours means each agency in the province operates differently, Pelletier said.

"Technically, everything that comes out that is offered to a child needs to be within the 20 hours a week," she said.

But even if the full 20 hours were being offered to a child, studies have shown it's not enough, Pelletier said.

American studies have indicated that with 30 hours a week of therapy, half the kids in therapy will become indistinguishable from non-autistic kids, she said.

"We've been operating for one year and we've come a long way, and I'm very thankful for what we have so far. But certainly we know that the research says that these kids need 30 hours a week of intervention. We get 20. So we know we will not achieve the outcomes that other programs get. Yet the children are still gaining and are still progressing," she said.

Nowlan said he would prefer to see his child get more hours and receive the therapy from a worker trained in applied behaviour analysis.

"Your kid gets into [applied behaviour analysis], they're going to get better," Nowlan said. "Things will get better for you and the child. This is more about trying to make it better than it is."

Only about 50 per cent of the workers at therapy centres have the behavioural training. The government's goal is to make that 100 per cent.

The program had to start somewhere, and the current hours and training levels are what the government could afford, said Family and Community Services Minister Mary Schryer.

Schryer, however, said she is surprised that therapy hours are being lost to meetings and paperwork.

"My understandings is that we have 20 hours of intervention," Schryer said. "We give each agency a set amount of dollars and the majority of that money is earmarked for intervention."

Audits of the new therapy system don't mention the loss of hours, but do refer to the difficulties of maintaining staff levels.

Workers are being lost from the therapy centres to the school system, according to the audits.

"It is difficult to keep staff, for different reasons. For sure, wages is one reason," Pelletier said. "It would be nice if we could pay our employees better, at least the equivalent of what they would get if they were in the school system."

It's difficult when the private sector and the public sector are competing for the same employees, Schryer said.