Province scrambles to help parents of special needs children set to lose support workers

The New Brunswick government is scrambling to find a way to help dozens of families whose developmentally challenged children face the loss of their support workers within days.

A spike in demand for the program has led to more families being placed on waiting lists and some children already in the program being kicked out in favour of other children with more severe challenges.

At the same time, one parent says his backup funding through the Department of Social Development is also evaporating.

Amond McKenna, the father of a three-year-old girl with Down syndrome and several other conditions, said he feels "nauseous" that his daughter will lose her support worker on Thursday.

"You're sending a message that's really demoralizing, that our children with disabilities don't matter enough, that their needs are too great, too costly, for them to access the same opportunities as their peers," he said.

Education Minister Dominic Cardy said Wednesday afternoon that his officials are rushing to find a way to help.

"We'll be looking at all avenues and we'll have news on that shortly," he said. "It's a pretty serious situation, and a lot of folks are talking about having to quit their jobs and so on if they can't get the help they need, so we don't want to see that happen."

The funding for the program hasn't been cut, and there is a waiting list for it every year, but Cardy said there has been "a significant spike" in applications this year.

That has led to about 100 families on the waiting list and about 50 who were in the program last year being bumped out by new applicants with more severe developmental challenges.

McKenna was turned down for the funding last year, but managed to obtain stopgap help through the Department of Social Development's family supports for children with disabilities program.

McKenna said he found out last week that he would not get that funding this year either and that Thursday would be the last day for his daughter's support worker.

"We had a week to figure out other arrangements," he said. "But for families with children with high support needs like this, other arrangements tend to be staying at home with a parent because the supports aren't available."

There's a lot of devastated families right now parents choosing which ones leave their career.- Amond McKenna, father

He said he will likely have to drop out of his psychology degree program at the University of New Brunswick to care for his daughter.

"There's a lot of devastated families right now parents choosing which ones leave their career," he said. "The resources aren't there to independently fund a support worker with these families."

Social Development spokesperson Danielle Elliot said families on support plans with the department have been able to use their funding for support workers "on a temporary basis."

"There have been no reductions in funding or changes" to how the department assesses such requests, she said.

McKenna said however that he was told that with demand for support workers spiking, the department was looking to get out of acting as a backup for another department's program.

"They're saying that their program was never intended for this, that this is for the Education Department to take care of,and that this whole time, that was more or less a misunderstanding that should not have happened."

Thriving with support worker

Families who were funded by the Education Department's program in the last year but who were not renewed for the coming year have had their cut-off date extended to April 26, Cardy said Wednesday.

But that extension doesn't apply to families like McKenna's who were using the social development program.

Besides having Down syndrome, McKenna's daughter has tubes in her ears, communicates mainly through signing, is hypotonic and has a vulnerable respiratory system.

Even with those challenges, he said, she has been thriving at her daycare program thanks to the support worker.

He said an early intervention worker who assessed her "was just delighted with how she was engaging with her peers and involved with all the activities, how her language was blossoming and how she was falling in line with the rhythms of the day. Her well-being was sparkling."

Cardy said Wednesday he was not sure why there has been an increase in applications for the program this year.

Equality of access at stake

Sarah Wagner, the executive director of the New Brunswick Association for Community Living, said one factor is the creation of designated early learning centres for preschool children.

Those centres are adopting inclusion policies, and "through that, there's probably more awareness [among parents] that the enhanced support worker program is available for centres to access if required."

She also said there's a growing disability rate in the province in general.

Wagner said the province needs to move quickly because equality of access is at stake.

"That equal opportunity, whether the support comes from Education or Social Development, is essential," she said.

"Certainly this has put a huge barrier up for the families we support, and putting a lot of strain on them to find suitable child care to support their children so they can continue to be employed."