Saving girl's autism therapy a race against time

The parents of a five-year-old Ottawa girl who has severe autism are hoping the launch of a new Ontario appeal process helps them salvage funding for their daughter's therapy. But a tight deadline could put them out of luck.

Ferne Greenall, 5, has autism, needs intensive one-on-one behavioural therapy

Family of Ottawa girl could lose funding for her therapy and a time crunch could block an appeal. 2:50

An Ottawa family is facing a time crunch as they try to salvage expensive, life-changing therapy for their daughter.

Ferne Greenall, 5, has severe autism. She's also visually impaired, non-verbal and forced to wear braces on her legs to help her walk.

Ferne had not improved from birth until she turned four years old. But over the last nine months, Joanne Small-Greenall said her daughter has made great strides because of intensive, one-on-one behavioural therapy.

"It really does pull at your heart cords because it's working for Ferne and every parent wants what's best for their child," said Small-Greenall.

Joanne Small-Greenall and her husband have been contacting CHEO and the ministry, asking questions about the new appeal process, which the family knows little about. (CBC)

Ferne sees a therapist 25 hours a week, supervised by different psychologists.

Her treatment is funded through CHEO's autism intervention program, which receives money from the Ministry of Children and Youth Services to cover children at the severe end of the autism spectrum.

CHEO to cut off funding Dec. 28

But CHEO has decided to discharge Ferne from the program, cutting off her funding on Dec. 28. CHEO would only tell the family that the decision was based on clinical judgment.

One of Ferne's psychologists, who works for the service provider, said "it doesn't make sense" because she is making "very good progress" in the intensive program.

"She really isn't a group learner yet," said Dr. Jeff Sherman. "Without this kind of programming she's not going to end up where she could've ended up."

Ferne is often taught imitation including clapping, making speech-like sounds, playing drums and actions such as sitting and standing. (CBC)

The family wants to appeal the decision, but when CHEO first notified the family in October, they discovered an appeal process did not exist.

But the ministry is launching a new, province-wide, third-party review process, the first of its kind in Ontario, on Dec. 14.

Girl eligible for appeal, if letter sent on time

The ministry confirmed Ferne is eligible for an appeal. But the Greenalls have to confirm that with a letter of permission from CHEO in the two weeks between the launch of the review process and the girl's last day in the program.

"It's not even getting the funding to continue Ferne's programming," said Small-Greenall. "We won't even be able to appeal to have that opportunity."

The family has to contact CHEO on Dec. 14 — they cannot do so beforehand — to notify the hospital of their interest in an appeal. CHEO then has to mail a letter to the family by Dec. 28.

Once Ferne is out of the program, she can never return.

Dr. Jeff Sherman, a psychologist specializing in autism for more than 35 years, says Ferne learned little to nothing before entering the intensive therapy program. (CBC)

Two weeks might seem like enough time but the family is concerned about the two weekends in between and the Christmas holidays that often cause delays in bureaucratic work.

"The thought that this could be taken away from her makes me physically sick," Small-Greenall said.

Group therapy inevitable in short term

The family said it understands Ferne will have to transition to a different therapy during the appeal process, but only in the short term if they win the appeal.

Losing the funding could force Ferne into the public school system where she will be placed in group therapy. The family said it could not afford the costs, between $40,000 and $50,000 per year, especially because they also have eight-year-old twins. One of them also has autism.

The third-party review panel will be chosen and co-ordinated by a Niagara-based group. It could include private practitioners, public sector psychologists and psychological associates, or academics with clinical experience.

But psychologists who work with service providers, such as Sherman, are not eligible to be on the roster. That concerns him, he said, adding that many of the qualified psychologists already work with service providers.