Parents of children with complex health conditions now have a number to call in New Brunswick to get help accessing services.
The NaviCare/SoinsNavi toll-free line will be answered in both official languages by a nurse who can help guide parents to medical experts and financial supports in the province.
Program co-ordinator Jennifer Belyea said she knows what it's like to go it alone.
Sixteen years ago, she gave birth to a son with severe intellectual and developmental disabilities.
He was later diagnosed with Angelman syndrome, a rare genetic disorder that has rendered him susceptible to seizures and gastrointestinal complications. He has to use a wheelchair.
"There were specialists that I didn't even know existed," said Belyea, who brought her son and two daughters to the news announcement Tuesday morning at the University of New Brunswick Saint John.
"They weren't even referred to us in the beginning, and I just kind of stumbled on them afterward and thought, 'Why didn't I know about this?'"
Belyea said she brings her own history to the project as well as professional experience as a social worker trying to advocate on behalf of stressed out parents.
"Typically ... they're exhausted," she said.
Promises more convenient access
NaviCare was developed by researchers Rima Azar at Mount Allison University and Shelley Doucet at UNB Saint John.
They said they did a needs assessment by interviewing more than 120 people, including youth, parents, educators and health-care providers.
Complex health conditions can be physical, emotional, behavioural, developmental or a combination of these. Parents who aren't sure if their children have complex health conditions can ask the help line.
"The primary aim of the centre is to help facilitate and integrate more convenient care to support the physical, mental, emotional, spiritual and social needs of children and their families," Doucet said.
Azar says the program should spare parents from having to tell their story over and over again, in their search for the right assistance.
"Regardless of the condition, whether it's physical, mental, or behavioural, or all [these things] at once, parents feel overwhelmed and at times, lost," she said.
Current staffing will see a registered nurse, to be known as a patient navigator, provide assistance during office hours on weekdays.
At other times, calls will be forwarded to Tele-Care and the nurse will return the messages at the next opportunity.
"It's the largest single grant that the foundation has ever made," said director Peter Daniels.
"We're anxious to see how it develops."
NaviCare can be reached at 1-888-641-1977. More information on the virtual service is available at the NaviCare webpage.