Petition calls for shorter wait lists for children

Woman told it will take up to 20 months to see developmental physician

Daniel MacEachern dmaceachern@thetelegram.com
Published on March 7, 2014

A St. John’s woman is furious it could take nearly two years to get her son’s behavioural problems diagnosed — and even longer for treatment.

Darlene Brown said the behavioural therapist she consulted believes her son is showing signs of attention deficit hyperactivity disorder, sensory problems, anxiety and obsessive-compulsive disorder.

“My son continuously rocks,” she  said.

“He doesn’t obey, he doesn’t pay attention. He can’t focus. … He licks his fingers and he bites his hands almost to the point of blood.

“And all this stuff is progressing. Licking his hands and the aggressiveness is getting worse. This morning he tried to hit me with an umbrella.”

Brown said she’s concerned about her son starting kindergarten in the fall, and she hopes to have a

handle on treatment for her son before he has trouble in school.

“I think it falls under the spectrum of autism. I’m not quite sure. I’m new to this,” she said. The problem is, she said, she’s been told it can take up to two years just to get her son diagnosed, let alone start treatment.

“When I contacted the Janeway, the manager there, she told me it’s a two-year waiting list to get in to see an (occupational therapist) and maybe up to 20 months to see a doctor to get diagnosed,” she said.

“But I’m after learning now that’s just to get in there. To get treatment, it’s even longer. You’ve got to get diagnosed first, and then treatment’s longer. You can’t get any headway anywhere. It’s all red tape.”

Eastern Health declined a request for an interview, but an email from spokeswoman Zelda Burt said the wait time to see a developmental pediatrician is about 16 months.

Depending on a child’s symptoms, the doctor can refer a child for a full assessment to the province’s autism team, or refer the child to other treatment based on the diagnosis.

The wait list to see an occupational therapist as part of the autism team is about one year after being seen by the developmental pediatrician.

“It should be noted that there is no wait time for a child diagnosed with autism spectrum disorder to receive applied behavioural analysis home therapy through Eastern Health’s Direct Home Services,” wrote Burt.

“This is an intervention program for children specifically diagnosed with ASD (autism spectrum disorder), and may include supports such as one-on-one therapy to enhance social and communication skills, and to help improve behavioural issues. Children can be referred to this intervention program by a pediatrician.”

Seeking answers on wait times, Brown called her MHA, Dan Crummell, who said he’d look into it. Brown said when he got back to her, he confirmed that the wait times she’d been told were accurate.

“I said, how are you going to help me? He said, ‘You can do three things. See your family doctor, and get a referral’ — which I’ve done, I’m waiting on an appointment from my family doctor. He said keep doing what I’m doing, and keep up doing what is best for my family, that was his three suggestions.”

Brown said she told Crummell she wanted him to speed up her referral.

“I said, ‘My son is getting worse every day.’ He said, ‘I can’t do that.’ I said, ‘So what can you do for me?’” said Brown. “I said, ‘So actually, you can’t do anything for me as an MHA.’ He said, ‘I have a job to do.’ I said, ‘Yes, and part of that is advocating for me.’ And then when I started saying, ‘You’re doing nothing for me, basically,’ he started laughing at me. That just made me angrier.”

Brown says it shouldn’t take longer than six months to get a child in to see a developmental physician.

“We need more funding for these kids. There’s more kids being diagnosed every day,” she said. “They have special needs, they’re being taken out of school because of behavioural problems, and the reason why is half is not being diagnosed fast enough and quick enough to get them the help they need. My son’s going to kindergarten. If he’s got to wait two years he’ll almost be in Grade 2 before he gets help.”

She’s started an online petition earlier this week — at gopetition.com; search “wait times for Janeway” — and garnered more than 200 signatures in the first 24 hours.

“There’s a lot of people, obviously, that are going through the same thing I’m going through. Some are just afraid to speak out,” she said.

Crummell declined an interview, saying in an email he was busy in meetings on Thursday.

“While it would not be appropriate for me to speak to a particular case, I want to assure my constituents that any time someone from my district comes to me with an issue, I work hard as their elected representative to help them resolve the situation,” he wrote in the email.

“Nothing is more important to me than being responsive to the needs of the people of my district. I take these responsibilities very seriously.”