Parents say disability program ‘misses the mark’

Raising a disabled child is difficult, but nowhere near as hard as dealing with the government body that is supposed to help, says Russ Hobbis. "It's unbelievable how insensitive and unhelpful they are," he said.

Raising a disabled child is difficult, but nowhere near as hard as dealing with the government body that is supposed to help, says Russ Hobbis.

“It’s unbelievable how insensitive and unhelpful they are,” he said.

Using the territory’s Family Supports for Children with Disabilities program for his autistic seven-year-old daughter, Molly, has been like pulling teeth, said Hobbis.

“Having special-needs kids is really hard on families to begin with,” he said. “You have that stress, and then when you try to get help, you have nothing but stress from the department that’s supposed to help you.”

It’s been a struggle to get Molly into speech therapy programs, and even to get her therapist in to attend meetings.

“I had to pay out-of-pocket for her speech therapist to attend team meetings, but the contractor that they hired from Vancouver can attend the meetings,” he said.

It’s not that the contracted therapist is bad. She’s excellent, said Hobbis.

The problem is that the agency, which was set up to be family-directed, is being stymied by “bureaucratic red tape” and ignoring the wishes of parents when it comes to the care of their children, he said.

“The department is overstepping their mandate,” said Hobbis. “They’re set up to assist families, not to dictate what to do.

“These are social workers that have not even met my daughter, and they’re telling us what programs we can use for her.

“It’s brutal and it gets worse every year.”

The most recent row with the agency was overfunding for an inclusion worker – an aide to help Molly deal with social situations – for a day camp it recommended.

Funding was only available for an inclusion worker or the camp, but not both.

At the last minute, the Learning Disabilities Association of the Yukon, which runs the camp, came through with funding.

“All they are is financial officers,” said Hobbis. “They’re not doing any social work, all they’re doing is budgetary work.”

Hobbis isn’t the only one frustrated with the agency.

“Parents have brought forward concerns about sort of a sense of losing that parent-directed idea,” said Leah Davy Ryckman, the executive director of Autism Yukon. “It’s a small handful of families that have brought concerns to me, but they’re very valid concerns.”

But, by and large, parents are happy with the level of service they get, she added. “It’s done amazing things for our community,” said Rychman.

Family Supports for Children with Disabilities was set up in 2008.

Modeled after a similar program in Alberta, the agency is designed to help support parents with caring for their disabled children. The agency helps with case management, offers referral services, pays for therapy, child care, transportation and more.

It also may pay for up to 200 hours of inclusion support, to provide a trained aid to help children engage in community activities.

The agency currently provides those services to approximately 110 families.

“The real goal is to support parents and children with disabilities, to hopefully support those kids to lead as good a life as they can, and to their fullest potential,” said Brad Bell, the manager of Family Supports for Children with Disabilities.

It’s definitely not perfect, he said.

“I do know that there are parents that may be dissatisfied, and sometimes there can be misunderstandings, but we’re always open to that communication from parents in how we can do a better job,” said Bell.

Not everyone is frustrated with the agency.

“If I had to write them a report card I would give them an A+,” said Joline Balmforth, whose six-year-old son, Benjamin, has received funding from the agency for the last two years.

Benjamin doesn’t yet have a diagnosis, but the behaviour therapy and advocacy that he’s received from the agency has made a huge difference, said Balmforth.

“It’s been outstanding,” she said. “I couldn’t ask for any more.”

For parents who are new to the system, that’s a typical reaction, said Ryckman. But parents who have been with it from the beginning are often more critical.

“It’s total bullshit,” said Julie Robinson, one of the parents who was front and centre in lobbying the government to set up the agency in the first place.

“It’s fallen really short of the mark, and it’s really sad for all of us who fought for so many years,” she said. “What we had envisioned and what we had hoped for, is that the bureaucracy of it, the administration of the process, would be given to one of the longstanding non-profits … but they decided to make their own government agency.”

In Robinson’s view, the government is ill-equipped to offer these kinds of family-directed services.

“The government, they just cannot do it, they have no capacity to,” she said. “They have a forensic heart.

“It’s about the dollars, it’s not about compassion.”

The agency does have plans to reach out to both parents and non-profit organizations in a more formal way.

This fall, it will be establishing a parent advisory committee in an effort to get more substantial feedback from the families it helps.

In the meantime, Hobbis plans to keep advocating for his daughter.

“My daughter is perfect,” he said. “I wouldn’t change her, but to make it easier for her, she needs as much help as she can get,” he said. “I don’t care whose toes I step on.”

Contact Josh Kerr at

joshk@yukon-news.com

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